Sunshine and Superwoman

sad womanToday is just one of those days: Bear’s car is in the shop so I got up early to take him to work, I turned on the dishwasher and nothing happened, I posted what I thought was a non-political message and got a political rant in return, answered a text only to find that my childhood friend thought I was ignoring her.  I’ve got a pretty happy life, so this was a disconcerting start of the day to say the least.

And then I opened the lab results for yet another blood test.  The one I wrote about two weeks ago was from August; this one is from last week. Should have saved it for tomorrow.

While the out of range results weren’t that much out of range, they were out of range.  Since this is one of those days, all of a sudden this became of great concern to me.

The Vitamin D, 25-Hydroxy, Total was 28.6 instead of within the 30.1 -100 normal range.  It would probably help you understand my mystification if I let you know that I’ve been taking 2000 mg. of vitamin D daily for several years.

I went running right back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease to find out why this is important.  Thank goodness, I have my office copy!  How could anyone memorize everything they need to know about their health, I wonder.Book Cover

This is what I wrote about vitamin D (page 48):

  • The kidneys produce calcitrol which is the active form of vitamin D. The kidneys are the organs that transfer this vitamin from your food and skin [sunshine provides it to your skin] into something your body can use.
  • Both vitamin D and calcium are needed for strong bones. It is yet another job of your kidneys to keep your bones strong and healthy.
  • Should you have a deficit of Vitamin D, you’ll need to be treated for this, in addition for any abnormal level of calcium or phosphates. The three work together.
  • Vitamin D enables the calcium from the food you eat to be absorbed in the body. CKD may leech the calcium from your bones and body.
  • Phosphate levels can rise since this is stored in the blood and the bones as is calcium.  With CKD, it’s hard to keep the phosphate levels normal, so you may develop itchiness since the concentration of urea builds up and begins to crystallize through the skin. This is called pruritus.

I have been itchy lately, but since my phosphate levels have never been out of range, I concluded it was just dry skin due to our low to nil humidity here in Arizona.  Maybe it’s not.  We’d been keeping my calcium levels low – but in range – since a bout with kidney stones several years ago. I also definitely stay out of the sun, another source of vitamin D, since a

sun-graphic1pre-cancerous face lesion. I’d had a bone density test recently and that was just fine, but had I been doing all the wrong things for my kidney health in protecting myself from kidney stones and melanoma?

Something was nagging at me about vitamin D, so I turned to the glossary of my book (page 136) and that’s where I found it:

“Vitamin D: Regulates calcium and phosphorous blood levels as well as promoting bone formation, among other tasks – affects the immune system.”

Affects the immune system.  But how?  Science Daily at http://www.sciencedaily.com/releases/2010/03/100307215534.htm provided the answer I sought:

“Scientists have found that vitamin D is crucial to activating our immune defenses and that without sufficient intake of the vitamin – the killer cells of the immune system — T cells — will not be able to react to and fight off serious infections in the body. The research team found that T cells first search for vitamin D in order to activate and if they cannot find enough of it will not complete the activation process.”

How did I miss that?  And how many others knew that vitamin D didn’t just build strong bones as we’d been taught in primary school?

nsaidsI imagine my nephrologist will up my vitamin d dosage when I see him next week, but I still can’t handle the sun or take calcium supplements.  Maybe there’s some food that can provide vast quantities of this vitamin.

But no, according to the National Institutes of Health at http://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/:

“Vitamin D is a fat-soluble vitamin that is naturally present in very few foods, added to others, and available as a dietary supplement.”

Well, I wanted to know what those foods were even if they could only provide 20% of the needed vitamin d at most.  I clearly remembered salmon, tuna, and egg yolks, but what else?  Mushrooms, of course.  And???

I had to turn to the internet for more suggestions. Fit Day at http://www.fitday.com/fitness-articles/nutrition/vitamins-minerals/5-foods-rich-in-vitamin-d.html informs us that milk, cereal, and even orange juice are vitamin d fortified. For me, that’s a joke.  I’m lactose intolerant, don’t like cereal, and o.j. has too much calcium in it.

I like fish, but two to three times a week?  I’m not sure I want to spend my five ounces of protein that way so often during a week.  I don’t care for eggs much, but am willing to eat them once a week just to eat something healthy. Mushrooms are really tasty, but my ¼ cup doesn’t go very far.

You know, just from moving myself to write, it doesn’t seem like such a bad day after all.IMG_0058

Which leads me to a thought I want to share: action is the road out of unhappiness.  I’m sure someone has thought of that before, but I own it now.  To that end, I’m working on The Book of Blogs and two other long time writing projects as well as having committed myself to Landmark Worldwide’s Wisdom Course.

Of course I still take the time to exercise (ugh!), sleep, and rest, but these projects are fun… and they make me happy.  We are capable of so much more than we think we are.

Until next week,

Keep living your life!

Put your Back into It for a Few Minutes

You can always tell what’s troubling me by the topic of each week’s blog.  This week it turns out I have “irritated disks.”  I kid you not.  It actually makes sense since Bear has some ruptured disks that won’t be treated until Friday and I’ve taken over his chores for a while.bad back

Let’s go back to the very beginning to explain this one. Here’s the definition I’ll be using for disk,

“Fibrocartilaginous material between spinal vertebrae which

 provides a cushion-like support against shock”

Thank you, McGraw-Hill Concise Dictionary of Modern Medicine for that.

Here we go again: a definition that needs another definition to understand the first definition.  Naturally you’d want to know what fibrocartilage is. According to Gale Encyclopedia of Medicine, it’s

“Cartilage that consists of dense fibers.”

Hang on there.  We need one more definition. I went to MedicineNet at http://www.news-medical.net/health/Cartilage-What-is-Cartilage.aspx for this definition of cartilage.

“….It is a firm tissue but is softer and much more flexible than bone.”

So we have soft, firm, flexible, dense fiber material between our spinal vertebrae.

Our what?  Vertebrae is

pic_backbone_side“a bone of the spinal column, typically consisting of a thick body, a bony arch enclosing a hole for the spinal cord, and stubby projections that connect with adjacent bones.”

 You can learn more about this by searching The Encarta Dictionary.

For the definition of spinal column (and you thought we were done with definitions), I chose to use Collins Dictionary at http://www.collinsdictionary.com/dictionary/english/spinal-column. There I found this definition:

“A series of contiguous or interconnecting bony or cartilaginous segments that surround and protect the spinal cord.”

I used to tell my children when they were little and my back hurt that the stuff between my vertebrae that acts as a cushion wasn’t cushioning right. Simple, direct, and to the point. Apparently I’m on the verge of that again. And I WILL stop it before it gets any worse.

How, you ask?  My chiropractor suggested ice for twenty minutes, then take it off for an hour and repeat… and repeat… and repeat.  With Chronic Kidney Disease, I need the daily exercise to keep my organs – all of them – strong, especially since CKD can eventually affect your other organs.  It’s our not-quite-filtered blood that feeds these organs, so we need to keep them healthy in as many ways as we can.

The icing is helping, but I have re-discovered my inability to do nothing for twenty minutes at a time.

So far, I’ve made sure to wear the dental device that helps my mandible return to normal placement after a night of wearing the Mandibular Advancement Device that treats my sleep iPadapnea.  I’ve also used the twenty minute to peruse Twitter, email, and Facebook for kidney information via iPad.  I’ve even done my banking online in this same twenty minutes.

As you can see, every minute of my time is important to me.  That’s why I was so glad to find new information that every minute you exercise counts.  Obviously with my back sort-of- injury (I don’t consider it an injury unless I can’t walk!), I’ve had to limit my exercise.

That’s the bane of my existence anyway… not the limiting, but the exercise. I usually ride five or six miles on the stationary bike or do a two mile walking tape with weights and stretch bands. I have to admit, I do it only because I have to.  I’d rather read or write anytime.

Although, I love my Sunday night exercise: the blues dance lesson my daughter, Abby Wegerski, and her partner provide at The Blooze Bar.  If you haven’t been there yet and you’re local, why not?  It’s downright fun!

blues dancersBack to every minute of exercise counts (Hurray!) This is the first paragraph of the news article about this study published on September 13 of this year.  You can tell right away why I like it.

“A new study suggests something encouraging for busy people: Every minute of movement counts toward the 150 minutes of moderate-intensity physical activity we’re all supposed to be getting each week. University of Utah researchers found that each minute spent engaging in some kind of moderate to vigorous physical activity was associated with lower BMI and lower weight.”

I have to admit I don’t break down that 150 minutes each week into daily totals when I think about exercise and it’s overwhelming.  Break it down and it’s only a little less than 22 minutes a day. Hey, that’s MY 22 minutes a day.

So what do they mean by “moderate-intensity physical exercise”?  I specifically looked at other than what we’d already consider exercise which can be incorporated into your everyday activities.

I park a little further away from my destination than I need to whenever I drive somewhere.  If I’m not able to walk too well that day due to plantar fasciitis, I’ll chop vegetables or mix my from scratch pancake batter by hand.  If my hands hurt from arthritis or neuropathy that day, I’ll play with Bella – the cancer free wonder dog.IMAG0269 (1)

Wait a minute, these are all suggestions made in the study. And better yet, they count toward my 150 minutes of exercise a week.  I like the idea that you don’t have to chuck the whole idea of exercise if you don’t have time to go to the gym, or climb your friendly, local mountain, or ride a bike 10 miles.

I know it’s hard to believe, so I’d suggest you take a look at the article about the study yourself at http://www.nbcnews.com/health/diet-fitness/every-minute-physical-activity-really-does-count-new-study-shows-f8C11042850 I especially like that my five minutes of rigorous dancing or riding the bike or exercising to those walking tapes count.  Well, my five minutes usually turns into more since I figure I’ve started so I might as well finish my twenty minutes or thirty minutes of exercise that day.

Book wise, I’m hard at work on The Book of Blogs, but have no finish date yet since I really don’t want to do any work when my beloved brother and sister-in-law are here for the two weeks I convinced them to stay.  Just one more week, just one more week. I’m like a child awaiting Santa!

Book CoverWhat Is It And How Did I Get It? Early Stage Chronic Kidney Disease is alive and well.  There just may be a European book signing tour in the spring for this book.  We’re contemplating Germany, Amsterdam, and London.  Readers, please let me know if you’re from these countries.

Until next week,

Keep living your life!

The Way I See It

There I sat moping because my eyes are getting worse and I didn’t know why.  So I did what I do best (and what brings me right up again, believe it or not) and started researching.  And I found multiple answers!  That’s terrific because I’ve already drunk my two cups of coffee today, so I couldn’t turn to them for solace.

You’ve probably figured out the answers are mostly Chronic Kidney Disease related. This is not something I wrote about in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. When I researched for the book, macular degeneration never even peeked out at me. (How do you like that play on vision related words?  Macular – peeked?  No?  Oh well.)Book Cover

Anyway…. let’s do our usual back to the basics for a topic we haven’t visited in a while.  Macular degeneration is, “An eye disease that progressively destroys the macula, the central portion of the retina, impairing central vision. Macular degeneration rarely causes total blindness because only the center of vision is affected,”

according MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=10027

I suppose the part about not causing total blindness should make me feel better, but I need more information first. The retina?  Anyone? No?

It’s, “… a multi-layered sensory tissue that lines the back of the eye. It contains millions of photoreceptors that capture light rays and convert them into electrical impulses. These impulses travel along the optic nerve to the brain where they are turned into images.There are two types of photoreceptors in the retina: rods and cones. The retina contains maculaapproximately 6 million cones. The cones are contained in the macula, the portion of the retina responsible for central vision. They are most densely packed within the fovea, the very center portion of the macula. Cones function best in bright light and allow us to appreciate color. There are approximately 125 million rods. They are spread throughout the peripheral retina and function best in dim lighting. The rods are responsible for peripheral and night vision.”

I had to dig deep for a thorough, yet easily understood definition. Thank you St. Luke’s Cataract and Laser Institute at http://www.stlukeseye.com/Anatomy/retina.html for helping out here.

Well, now you understand why I keep posting all those pictures containing glorious color.  That’s my way of saving up color for when I can’t see it anymore.  Although, it’s really the rods that are causing me most trouble right now.

Dim the lighting and I can’t tell what I’m looking at.  I don’t know where Bear is in a dim room unless he speaks and my poor black and white Bella!  She’s been walked into so often I don’t know why she doesn’t just run when she sees me coming.

However, it’s not as easy as just that.  There are two kinds of macular degeneration: wet and dry. I went back to our old pal Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/wet-macular-degeneration/basics/definition/CON-20043518 for the definitions:

“Wet macular degeneration is a chronic eye disease that causes vision loss in the center of your field of vision. Wet macular degeneration is generally caused by abnormal blood vessels that leak fluid or blood into the region of the macula (MAK-u-luh). The macula is in the center of the retina (the layer of tissue on the inside back wall of your eyeball). Wetmd image macular degeneration is one of two types of age-related macular degeneration. The other type — dry macular degeneration — is more common and less severe. Wet macular degeneration almost always begins as dry macular degeneration. It’s not clear what causes wet macular degeneration.”

Wait a minute.  Did you catch that “age-related macular degeneration”?  That’s what I have and that’s where the Chronic Kidney Disease comes into our equation.

I went to The National Institutes of Health website at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2390960/ to find the conclusions from a Journal of American Society of Nephrology study about the relationship between macular degeneration and Chronic Kidney Disease:

“…persons with moderate chronic kidney disease were 3 times more likely to develop early age-related macular degeneration than persons with no/mild chronic kidney disease.”

Thank you very much, CKD, for another undesired gift.  To be honest, although this has not shown up anywhere else in my family history, I don’t know if I would have developed macular degeneration even if I didn’t have CKD.  Apparently, smoking is another risk factor and that is something I played around with for decades – never becoming a chain smoker, but smoking nervously and socially.  Hey, we didn’t really know what the consequences could be at that time.

WebMD at http://www.webmd.com/eye-health/macular-degeneration/age-related-macular-degeneration-overview tells us the other risk factors:

“… high blood pressure, high cholesterol, obesity, and being light skinned, female, and having a light eye color are also risk factors for macular degeneration.”

racesUn-oh, I fit every one of these criterion (if light brown eyes are considered light eye color).  Sometimes I wish I had foresight instead of hindsight.  While I couldn’t have done anything about my race, sex, or eye color, there’s quite a bit I could have worked on as far as hypertension, hyperlipidemia, and weight.

Because I am a Pollyanna and need to find hope everywhere, my hope here is that my experience can at least serve as an object lesson for our younger Chronic Kidney Disease sufferers.  Sort of a do-as-I-say, not do-as-I-do example, if you will.

Change of subject:  The digital version of the book continues to sell far better than print copies so I want to remind you of an Amazon.com offer.  If you – or anyone you know – order a print copy, you (or that person) can order the digital copy for $2.99 instead of the usual $9.99.  The program is called Kindle Matchbook. (http://www.amazon.com/What-Is-How-Did-Get/dp/1457502143/ref=pd_rhf_se_p_img_1)

I especially recommend this program to medical students since I have found textbook rental companies trying to rent my book for one semester for more than it costs to buy the book.  Ridiculous!   This program is also valuable because you can share your digital copy with others.

Our Yom Kippur was filled with family and happiness.  If you celebrate, I hope yours was too.  If Eid al-Fitr is what you celebrate as a Muslim, my hope is that breaking the 30 day dawn to dusk fast of Ramadan was a joyous occasion for you. For the Catholics, I hope your celebration of the Feast of St. Francis of Assisi was everything you’d hoped it would be.  All three were celebrated this past Saturday.  I’ll take that as an indication that there are more similarities rather than differences between people of different religions.  For everyone who didn’t celebrate a religious holiday this weekend, as always, I wish you health and happiness.

Until next week,

Keep living your life.

Oh, The Pressure!

We enjoyed a cool, slightly wet, getaway weekend and it was wonderful.  I’m a fan of historical sites and Bear is more than willing to join me in seeing them, so we went to Tumacacori, the Presidio in Tubac, and The Pimeria Alta Museum in Nogales.  I was taken with all of them, but saddened to hear of each of their financial plights. I know this is not the best economy, but this is history.

IMG_0811I was surprised to discover that The Tubac Presidio State Historic Park is manned (and womanned) by a staff of volunteers – except for their director, Shaw Kinsley, who is also the author of the well written Images of America: Tubac. The volunteers do an excellent job, as good as that done by the park rangers at Tumacacori.

That got me to thinking about the pressure they all must be under… which got me to thinking about pressure of all kinds and its effect on blood pressure.  Being on a mini-vacation gave me loads of time to think, but this time I decided to write about just that: blood pressure.

Not only have I written about blood pressure in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, but you’ll notice several blogs about it if you use the topic search on the right side of the blog page.Book Cover

So why write about the same topic again, you ask?  This time, I took a look at how to take your blood pressure and some of the machines on the market.

Have I ever told you that when I am at my sleep apnea doctor’s office, my blood pressure always starts at about 150/89?  That’s high and I tell them it’s not my usual reading. We’re way past the white coat syndrome (blood pressure rising simply because you’re in a doctor’s office) here, so they take it again on the other arm and it’s something about 110/72.  I like that, but it’s not my usual reading, either.  Back to the first arm: 130/79.  Bingo!

I asked my primary care physician why this happens and she asked me to describe the monitor they used.  As I did, she started nodding her head.  Apparently, this type of automatic blood pressure monitor is notorious for being incorrect… yet doctors still use it for its ease.

Then she asked me how they held my arm while taking my blood pressure and slowly shook her head as I answered.  It seems there is a right way and a wrong way to hold the arm and – to further complicate matters – they differ depending upon the type of monitor being used.

Allow me to return to my roots for a second: Oy gevalt!  This is fairly complicated so let’s uncomplicate it.

I went to WebMD at http://www.webmd.com/hypertension-high-blood-pressure/guide/hypertension-home-monitoring for the following:

Before Checking Your Blood Pressure

  • Find a quiet place to check your blood pressure. You will need to listen for your heartbeat.toliet
  • Make sure that you are comfortable and relaxed with a recently emptied bladder (a full bladder may affect your reading).
  • Roll up the sleeve on your arm or remove any tight-sleeved clothing.
  • Rest in a chair next to a table for 5 to 10 minutes. Your arm should rest comfortably at heart level. Sit up straight with your back against the chair, legs uncrossed. Rest your forearm on the table with the palm of your hand facing up.

Were you surprised as I was at the direction to empty your bladder?  Think for a minute.  Have any of your doctors requested you do that before they took your blood pressure reading?  Yet, it makes sense.  Not only will the full bladder itself affect the reading, so will the worry that you need to get to the restroom as soon as possible.

Okay, now we’re ready.  What’s next?

cup-of-coffee-2This time, I went to the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/high-blood-pressure/in-depth/high-blood-pressure/art-20047889?pg=2

  • Check your monitor’s accuracy.
  •  Measure your blood pressure twice daily. (Once in the morning before you take any medications, and once in the evening.)
  • Don’t measure your blood pressure right after you wake up.
  •  Avoid food, caffeine, tobacco and alcohol for 30 minutes before taking a measurement
  • Don’t talk while taking your blood pressure.

Whoa!  This simple act of placing your arm, wrist, or finger in a monitor is not simple at all when you break it down into smaller elements. I admit it; I’m a talker and have been told a time or two to stop talking while my blood pressure is being measured.carpal tunnel

I also like to get my chores out of the way as soon as I wake up, but I see I can’t. This makes for a long morning routine for me. First I take off the wrist braces I wear at night for the carpal tunnel.  Then I clean the mandibular advancement appliance I’ve had in my mouth all night for the sleep apnea and brush it and my teeth.  Usually I would drink that delicious first cup of coffee now, but if I do, I have to wait for 30 minutes before taking my blood pressure.  Hmmm, I have to wait 15 minutes to use the bite rim to readjust my mandibular anyway. But where do I fit in the medications?  Oh, I’ll work it out.

wristWell, what about the different kinds of blood pressure monitors? I use a wrist monitor which my PCP is simply not thrilled with.  Her feeling is that I’m taking my pressure through two bones, the radius and the ulna, as opposed to only one bone, the humerus, with an arm device. There’s also the finger monitor, but that could be a problem if you have thin or cold fingers.

There are manual and battery operated versions of these monitors.  If you use an arm monitor, be aware that larger cuffs are available if needed. The one thing most blood pressure sites agree upon is that it’s not a good idea to rely on drug store monitors for your readings.

Most doctors will agree that the old fashioned sphygmomanometer is the best.  You’ll find this defined on page 135 of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

The cuff, the measuring device and the wires that connect the two in a machine used

to measure your blood pressure, commonly called a blood pressure meter.s

I find myself wanting to make some crack about writing this blog raising my blood pressure, but in all honesty, writing the blog is still one of my joys.

Until next week,

Keep living your life!

Sleepus Interruptus

I just started – and trashed – three different versions of what I thought today’s blog would be about because I didn’t understand the research.  That’s the trouble with not being a doctor, and why I always remind you to speak with your nephrologist before you take anyone’s advice about your Chronic Kidney Disease, even mine.

I finally decided to write about my first choice.  This is yet another indication that our hunches are right.  My hunch after a night of waking up just about every hour was to write about CKD and interrupted sleep.  I should have listened to myself and saved all that time.baby-shots-5

DaVita.com at http://www.davita.com/kidney-disease/overview/living-with-ckd/sleep-issues-and-chronic-kidney-disease/e/4896 tells us there are several reasons CKD patients have sleep problems:

  • restless leg syndrome
  • sleep apnea
  • inadequate dialysis clearance
  • emotions
  • changes in sleep patterns
  • caffeine

We share most of these reasons with those who do not have CKD except for those dealing with dialysis.  This includes the inadequate dialysis clearance.  It also includes restless leg syndrome which is usually associated with hemodialysis session. Since I only write about early stage, I won’t be discussing these causes.

Let’s talk about sleep apnea.  I wrote a blog about on August 12, 2012 that refers to this.  The most important information from that blog is:

“I found a study at http://www.medscape.com/viewarticle/538872which clearly links

sleep apnea and hypertension. Dr. John J. Sim makes the connection very clear:

‘We think there may be a causative factor here; that sleep apnea may be causing directGlomerulus-Nephron 300 dpi jpg

 glomerular injury,’ Dr. John J. Sim (Kaiser Permanente, Los Angeles, CA) told renalwire .

‘We already know that sleep apnea causes hypertension and that hypertension causes

kidney disease.’ If some degree of causality can be shown, it’s possible that treating sleep

 apnea may slow the progression of kidney disease, the authors speculate.”

This particular study was conducted in 2005.

Obstructive sleep apnea (OSA) was also the subject of January 13, 2014’s blog.  That’s where the following information is from:

“Have I ever told you I have sleep apnea?  And that this affects CKD patients? I do and it

does. According to http://www.ncbi.nlm.nih.gov/pubmed/20676805, one of the National

Institutes of Health’s sites, sleep apnea can raise blood pressure, which in itself is one of

the problems of CKD.  It can also result in glomerular hyperfiltration.”

This is from a 2010 study.

madOkay, so I have sleep apnea, had a sleep study and started wearing a Mandibular Advancement Device (MAD) at night to correct the problem, yet I still experience interrupted sleep.

Hmmmm, what is this ‘changes in sleep patterns’? Oh, of course.  Because I have CKD, I become more tired and even drowsy during the day.  Maybe I’ll sit on the couch in the family room to read for a bit; maybe I’ll even lay down there; and maybe – just maybe – I’ll fall asleep during the day.  Nothing wrong with naps, but if they’re long naps they could interfere with your sleep pattern.

So can going to bed earlier.  I tried that on really tired days and ended up waking up repeatedly.  I do go right back to sleep, but it just didn’t seem restful. Keep in mind that as you age, your sleep cycles are lighter and shorter.  So I may think I’m getting all the sleep I need, but the waking up interrupts the cycling of the different stages of sleep and then I start the cycles all over again.

WebMD at http://www.webmd.com/sleep-disorders/guide/sleep-101 tells us,

Victorian clock“During the deep stages of NREM sleep, the body repairs and regenerates tissues, builds

bone and muscle, and appears to strengthen the immune system. As you get older, you

sleep more lightly and get less deep sleep. Aging is also associated with shorter time spans

of sleep, although studies show the amount of sleep needed doesn’t appear to diminish

   with age.”

Uh-oh, the deep stages of NREM (non-rapid eye movement) sleep are stages 3 and 4 which I may be missing by constantly waking up.  These are also the stages during which the body restores itself.

Emotions?  I can see that.  I dwell on the family’s medical problems, or someone I know and love who is out of work, or even my sweet Bella’s brush with cancer and I can get myself truly worked up.  So I don’t.  I mean I don’t think about these things at bedtime.  If I can’t seem to get them out of my head, I write a list of things to think about tomorrow.  As simplistic as it sounds, it works for me.  This is one piece of advice you don’t need to check with your nephrologist.

Wait a minute!  Who included my beloved caffeine on this list?????? This is where I get emotional.  Those two cups of caffeine a day are the only item on my renal diet that help me not feel deprived.  Okay, maybe we do need to be a bit rational about this (Don’t you just hate to be a grown up sometimes?).

This is what The National Sleep Foundation at http://sleepfoundation.org/sleep-topics/caffeine-and-sleep has to offer us about caffeine and sleep:

“Caffeine enters the bloodstream through the stomach and small intestine and can

have a stimulating effect as soon as 15 minutes after it is consumed. Once in the body,CoffeeCupPopCatalinStock

caffeine will persist for several hours: it takes about 6 hours for one half of the caffeine

to be eliminated.”

Six hours for only half to be eliminated?  You mean, twelve hours for all of it to be eliminated?  I have got to stop drinking caffeine after noon. Okay, I can learn to live with that.  Heck, it’s better than no coffee at all.

Hopefully these suggestions will take care of my interrupted sleep problems.  Now what about yours?  Remember to speak with your nephrologist if you want to explore any of my suggestions.  As far as the emotions causing sleep problems, if my trick doesn’t work for you and you feel you need professional help with your emotions, please get it.

Here’s my last suggestion: buy a copy of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease before Moderate Stage Chronic Kidney Disease: The Book of Blogs is published. Then you’ll have the set of two.Book signing

Until next week,

Keep living your life!

From Deficiency to Support

happy birthdayI was invited to their joint birthday celebration at The Hotel Valley Ho in downtown Scottsdale by one of my daughters and her good friend. That’s a place I’ve wanted to see since it has some historical value. It was nice, but what was nicer was sitting next to a young friend who happens to be a ball player. baseball player

We both ordered vegetarian dishes. (Their asparagus with lemon zest was very tasty.) He knows I have Chronic Kidney Disease and started talking about my renal diet… and the limitation of five ounces of protein per day. “Don’t you worry about protein deficiency?” he asked with alarm.

And that got me to thinking. According to The Centers for Disease Control and Prevention at http://www.cdc.gov/nutrition/everyone/basics/protein.html, as a woman above the age of 19 and all the way up to beyond the age of 70, I need 46 grams of protein a day.

Well, how many grams are in an ounce? I went directly to AskNumbers.com at http://www.asknumbers.com/OuncesToGramsConversion.aspx for the answer.  While I’m not innumerate (lacking mathematical ability), I don’t have the patience for long, involved mathematical formulations. That’s where I found both a convenient ounce to gram conversion calculator and a conversion chart.

According to the site,

“5 Ounces = 141.7476155 Grams.”

That’s way more than the 46 grams of protein required by a woman my age. So what was my friend concerned about?

Men in the same age range need 56 grams of protein as I saw on the CDC site mentioned above. That’s still only 1.9753418664 Ounces. This wasn’t making any sense to me.

Book Cover

I went right back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for the definition of protein:

      “Amino acids arranged in chains joined by peptide bonds to form a compound, important because some proteins are hormones, enzymes, and antibodies.”

proteinI decided it wasn’t as important to know what they were as it was to know what they do.

I found the definition for hormones in my book:

                               “Gland produced chemicals that trigger tissues to do whatever their particular job is.”

Got it!  Sort of like a catalyst to get those tissues working.

I went to Dictionary.com at http://dictionary.reference.com/browse/enzyme for the medical definition of enzyme:

“Any of numerous proteins or conjugated proteins produced by living organisms and functioning as specialized catalysts for biochemical reactions.”

There’s that word ‘catalyst’ again.

Well, what about antibodies?  Using the same source, I found this:

                                                “A protein substance produced in the blood or tissues in response to a specific antigen, such as a bacterium or a toxin,

                                                    that destroys or weakens bacteria and neutralizes organic poisons, thus forming the basis of immunity. “

Lots of definitions here, but the important part is that they all explain how important protein intake is. I think my friend’s error was not in worrying about protein deficiency, but in getting the math confused.  I thank him for his concern nonetheless.

I think that’s as far as we can go with my friend’s concern, but I think I’ll address vegetarian protein sources before I leave the topic since we’re all pretty much aware of meat protein sources (although a few of those are on this chart, too). Check with your doctor to see if these are on your renal diet.

protein sources

 

Moving right along…some readers have asked for online support groups that are not on Facebook since they – these particular readers – aren’t. I’ve also included telephone and face to face support groups since I know some of you receive the blog when someone with a computer prints it out to give to you. Please remember these are not recommendations.  Some I know and are comfortable with, others are new to me.

My first suggestion – always my first suggestion – is DaVita.com at http://forums.davita.com/activity.php.  This is the same wonderful group that has brought CKD education into the community via SlowItDown and also offers CKD classes at their facilities throughout the world.

Lori Hartwell’s Renal Support Network offers periodic patient meetings (Go to http://www.rsnhope.org/meetingssupport-group/ to check availability and to register.) and online support at all times at http://www.kidneyspace.com/

American Association of Kidney Patients (AAKP) offers a listing of support groups by state at https://www.aakp.org/community/support-groups.html. Not all states are listed, including Arizona. These are in person meetings.

The National Kidney Foundation (NKF) has peer matching telephone support. You will need to be interviewed first.  You can find more information at http://www.kidney.org/patients/peers. You can also call 855-653-7337 (855-NKF-PEER) or email nkfpeers@kidney.org to participate.peerslogo

WebMD has the Kidney Disorders Community at http://exchanges.webmd.com/kidney-disorders-exchange.

Drugs.com at http://www.drugs.com/answers/support-group/chronic-kidney-disease/ offers a forum type support group in which you ask a question and answers are offered.  This is not real time, but may prove valuable.

For my Australian readers, you can join a Kidney Club by emailing matty.hempstalk@kidney.org.au or calling 0404 177 748.  There’s more information at http://www.kidney.org.au/ForPatients/KidneyClubs/tabid/615/Default.aspx

There are even Meetup Groups for CKD patients.  Take a look at http://chronic-kidney-disease-ckd.meetup.com/.  Presently, there are two in the United States and one in Australia, but they are open to starting more.  Rephrase: Meetup is open to you starting one in your area.

The more I researched, the more I realized that each state, and even each city, in the U.S. has their own groups.  I gather it’s the same in other countries.  If none of these is what you’re looking for, I’d suggest an online search for CKD support groups in your area.support

There are also blogs about CKD… and you thought mine was the only one.  Again, I’m not recommending any of these, simply informing you they exist:

From Mexico – http://mychronickidneydisease.blogspot.com/

Well this is surprising.  Despite researching several times, I couldn’t find any other blogs from a patient’s perspective that are still in existence.  I have not included the blogs on the support groups I listed above. Perhaps you know of some others?

It’s been a heck of a week.  Thank you for your good wishes for my dog.  Sweet Ms. Bella has her stitches removed and then sees the oncologist on Wednesday. She is a delicious being!IMAG0093

Now we also need to deal with other being’s physical conditions.  It seems I’m the healthiest one I know, even with the CKD. Hmmm, wonder if it has to do with our age group.

Until next week,

Keep living your life!

 

 

 

 

 

It’s All Connected

About those random posts you may be receiving from me… I am transforming the blog into a book as promised.  However, I don’t really know what I’m doing and am learning on the job, so to speak.  I Kidney Book Coverwouldn’t be at all surprised if you heard me yelling, “OH, NO!” (and worse) at least once a day from now until the process is complete.  I guess you’re bearing witness to my learning process. Boy, am I ever grateful you’re a patient lot!

Now, what I really wanted to write about. I got a call from my primary care physician telling me that while I had improved my BUN, Creatinine, BUN/Creatinine Ratio, LDL, and eGFR levels on my last blood test, the Microalbumin, Urine, Random value was abnormal at 17.3. I checked online to make certain I had heard her correctly.

Dr. H. Zhao practices at Deer Valley Family Medicine here in Phoenix.  The practice started using a site to report your results as soon as they’re available, sometimes the next day.  I wonder why I got that call at all when this process is in place.

When I finally finished congratulating myself for all these improvements, I started to question why the Microalbumin value was out of range.  I knew it hadn’t been out of range last year, but I did have Chronic Kidney Disease.  That in itself would have meant it would be out of whack, wouldn’t it?

Here we go again.  I pulled out my trusty copy of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease and turned to Chapter 5, “What Flows Through You,”  The Random Urine Tests,  number 9299 on page 52 (Honestly? I used the word search function for the digital book, even though I had the print copy in front of me.  It’s just plain easier!) and found:

“tests for micro, or very small amounts, of  albumin in the urine. Ur stands for urine. Albumin is a form of protein that is water soluble. Urine is a liquid, a form of water, so theBook Cover

  albumin should have been dissolved. Protein in the urine may be an indication of kidney disease.”

Of course I wanted more.  We all know micro from micro-mini skirts (Are you old enough to remember those?) and microscope.

Wait, if protein in the urine “may be an indication of kidney disease” – which I have – why was this a problem?  Or was it a problem?

Both high blood pressure (which I do have) and diabetes (which I don’t) could be the cause since both may lead to the proteinuria (protein in the urine, albumin is a protein as mentioned above) which may indicate CKD. Microalbuminia could be the first step to proteinuria.

But, as usual with medical conditions, it’s not that black and white.  I scurried over to our old friend WebMD at http://www.webmd.com/a-to-z-guides/proteinuria-protein-in-urine to look for other risk factors and found these:

  • Obesity
  • Age over  65
  • Family history of kidney disease
  • Preeclampsia (high blood pressure and proteinuria in pregnancy)
  • Race and ethnicity: African-Americans, Native Americans, Hispanics, and Pacific Islanders are more likely than whites to have high blood pressure and develop kidney disease and proteinuria.

While I’m well past child bearing, I’m also over 65 and, ummm, (how’s this for hedging?) clinically obese.  Does that mean proteinuria is to be my new norm?

NIHMaybe there’s something more I can do about this.  According to Skip NavigationU.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES‘ National Kidney and Urologic Diseases‘ Information Clearinghouse (NKUDIC), A service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), National Institutes of Health (NIH) at http://kidney.niddk.nih.gov/kudiseases/pubs/proteinuria/

“In addition to blood glucose and blood pressure control, the National Kidney Foundation recommends restricting dietary salt and protein. A doctor may refer a patient

to a dietitian to help develop and follow a healthy eating plan.”

 This is nuts!  I have CKD.  I already restrict myself to five ounces of protein a day. I’ve abolished table salt from the house and watch the salt content in the foods I eat. I’m handling my blood pressure with Losartan/HCTZ. (See the next paragraph.) I haven’t progressed from microalbuminuria to proteinuria, yet I’m still doing more damage to my body.

MedicineNet at http://www.medicinenet.com/losartan_and_hydrochlorothiazide/article.htm explains the Losartan/HCTZ very well:blood pressure 300dpi jpg

“Losartan (more specifically, the chemical formed when the liver converts the inactive losartan into an active chemical) blocks the angiotensin receptor. By blocking

the action of angiotensin, losartan relaxes the muscles, dilates blood vessels and thereby reduces blood pressure….Hydrochlorothiazide (HCTZ) is a diuretic (water

pill) used for treating high blood pressure (hypertension) and accumulation of fluid. It works by blocking salt and fluid reabsorption in the kidneys, causing an

increased amount of urine containing salt (diuresis).”

Uh-oh, that leaves blood glucose, which has never been high for me.  However, my A1C has been high since this whole CKD ride has started.A1C

Let’s back track a little. The Mayo Clinic at http://www.mayoclinic.org/tests-procedures/a1c-test/basics/definition/PRC-20012585  tells us:

“The A1C test result reflects your average blood sugar level for the past two to three months. Specifically, the A1C test measures what percentage of your hemoglobin — a protein in

red blood cells that carries oxygen — is coated with sugar (glycated). The higher your A1C level, the poorer your blood sugar control and the higher your risk of diabetes complications.”

I don’t have diabetes…yet.  It’s becoming clear that I will – in addition to worsening my CKD – if I don’t pay even more attention to my diet and become more stringent about sore kneeexercising.  It’s sooooo easy to say not today when the arthritis rears its ugly head…or knee.

It’s been said there’s no way to do it, but to do it (by me, folks.  Ask my children.) So now I need to take my own advice and get back to the stricter enforcement of the rules I know I need to live by.  After all, they let me live.

If you ever needed proof that the body is an intricate thing with all its part being integrated, you got it today.

Until next week,

keep living your life!

Laboring on Labor Day

labor dayToday is Labor Day.  We celebrate it every year.  But what is it? This holiday, first celebrated in New York City in 1885 (my favorite year) or even 1882, was founded to celebrate workers and their contributions to society. In other words, we’re celebrating – just as the name suggests – labor.

We, as Chronic Kidney Disease patients, also labor… every day of the year, every year of our lives.  We cannot contribute to society unless we labor to save ourselves.  Just keep that in the back of your mind as you bar-b-que, watch a parade, or go to a picnic today. Maybe it’ll help you stick to your renal diet, if nothing else.

Our community, our families, and our doctors labor for us, too.  So do researchers.  You may remember Dr. N. Hild’s comment back in July about the New England Journal of Medicine.  One of the review articles in the journal concerned Acute Kidney Injury (AKI) and Chronic Kidney Disease (CKD).

On the very first page of What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, I wrote, “…chronic is not acute.  It means long term, whereas acute usually means quick onset and short duration.”  All those years of teaching English in high school and college paid off for me right there in that sentence.Book Cover

I’d always thought that AKI and CKD were separate issues and I’ll bet you did, too.  But Dr. L.S. Chawla and his co-writers based the following conclusion on the labor of epidemiologists and others: “— chronic kidney disease is a risk factor for acute kidney injury, acute kidney injury is a risk factor for the development of chronic kidney disease, and both acute kidney injury and chronic kidney disease are risk factors for cardiovascular disease.”  You can read the article for yourself at: http://blogs.nejm.org/now/index.php/acute-kidney-injury-and-chronic-kidney-disease/2014/07/04/

New England Journal of MedicineI keep wondering why this article was published on Independence Day, but maybe I’m trying to make too much of that. You know, independence from ignorance about new findings concerning our disease, that sort of thing.

Not surprisingly, the risk factors for AKI are the same as those for CKD… except for one peculiar circumstance.  Having CKD itself can raise the risk of AKI 10 times. Whoa!  If you’re Black, of an advanced age (Hey!), or have diabetes, you already know you’re at risk for CKD, or are the one out of nine in our country that has it.  Once you’ve developed CKD, you’ve just raised the risk for AKI 10 times.  I’m getting a little nervous here.

Someone I grew up with just had AKI which temporarily shut his kidneys down.  This was a month ago.  While his kidneys are fully functioning now, because he had this episode, he’s at risk for CKD and Cardiovascular Disease (CVD, as long as we’re making a little no sodium alphabet soup here).

It makes sense, as researchers and doctors are beginning to see, that these are all connected.  I’m not a doctor or a researcher, but I can understand that if you’ve had some kind of insult to your kidney, it would be more apt to develop CKD.

And the CVD risk?  Let’s think of it this way.  You’ve had AKI.  That period of weakness in the kidneys opens them up to CKD (Forgive, the super simplistic and totally devoid of other factors explanation here).  We already know there’s a connection between CKD and CVD.  Throw that AKI into the mix, and you have more of a chance to develop CVD whether or not you’ve had a problem in this area before.AKI

Let’s not go off the deep end here.  If you’ve had AKI, you just need to be monitored to see if CKD develops and avoid nephrotoxic (kidney poisoning) medications such as NSAIDS – just wrote about those in last week’s blog – , contrast dyes, and radioactive substances.

This is just so circular!  It was nephrotoxic medication that caused AKI in the first place for the person I know.

As with CKD, your hypertension and diabetes (if you have them) need to be monitored, too. Then there’s the renal diet, especially low sodium foods. The kicker here is that no one knows if this is helpful in avoiding CKD after an AKI… it’s a ‘just in case’ kind of thing to help ward off any CKD and possible CVD from the CKD.

Has your primary care doctor (PCP) recommended a daily low dose aspirin with your nephrologist’s approval?  This is to protect your heart against CVD since you already have CKD which raises the risk of CVD. Now here’s where it gets confusing, the FDA has recently revoked its endorsement of such a regiment.  You can find an article about this at: http://articles.mercola.com/sites/articles/archive/2014/08/04/daily-aspirin-side-effects.aspx.depression-cause-heart-attack-1

Keep in mind that I am not endorsing Dr. Mercola or his products. I’m not familiar enough with either to endorse or warn against them.  This was simply the most reader friendly article about the subject I could find.  Another reminder that sometimes you need to just sit down and have a heart to heart, or more realistically leave a message with your concerns, with your PCP and talk it out.

On a personal note, congratulations to my baby who turned 30 this week, my husband who turned 68 this week, and one of my almost sons-in-law who turned 40 something this week.  This is the most trying week of the year for me as far as the renal diet and one of the happiest since I am able to celebrate with all these people I love.

This week, I’ve learned that cake from a mix doesn’t always turn out as you’d thought it would, there’s never enough frosting for the whole cake in one can, and I’m not missing anything by not eating these.happy birthday

This week, I’ve learned that we can bar-b-q food prepared so that I can eat it, I don’t have to eat red meat, and corn on the cob is delicious without any sugar in the water you boil to cook it.

This week, I’ve also reaffirmed for myself that it’s not the food, but the company, that makes a party… and a family… and me happy.

Until next week,

Keep living your life!

Never NSAIDS

Never what?  One of the first rules we learn as Chronic Kidney Disease patients is never to take a NSAID, a non-steroidal anti-inflammatory drug.  Raise your hand if you remember why.  Hello fellow with the beard in the back of the room; what do you say?

Correct!  They further damage the kidneys.  Can you tell us how?  No?  Don’t feel bad.  Most people can’t, even those suffering from CKD.

What was that?  Oh, you want over the counter (non-prescription) names of some NSAIDS?  Sure.  Here’s a list courtesy of Nsaids-list at http://www.nsaids-list.com/:

  • Aspirin (Aspirin is a brand name; the chemical is called acetylsalicylic acid)nsaids
  • Celecoxib (Celebrex)
  • Dexdetoprofen (Keral)
  • Diclofenac (Voltaren, Cataflam, Voltaren-XR)
  • Diflunisal (Dolobid)
  • Etodolac (Lodine, Lodine XL)
  • Etoricoxib (Algix)
  • Fenoprofen (Fenopron, Nalfron)
  • Firocoxib (Equioxx, Previcox)
  • Flurbiprofen (Urbifen, Ansaid, Flurwood, Froben)
  • Ibuprofen (Advil, Brufen, Motrin, Nurofen, Medipren, Nuprin)
  • Indomethacin (Indocin, Indocin SR, Indocin IV)
  • Ketoprofen (Actron, Orudis, Oruvail, Ketoflam)
  • Ketorolac (Toradol, Sprix, Toradol IV/IM, Toradol IM)
  • Licofelone (under development)
  • Lornoxicam (Xefo)
  • Loxoprofen (Loxonin, Loxomac, Oxeno)
  • Lumiracoxib (Prexige)
  • Meclofenamic acid (Meclomen)
  • Mefenamic acid (Ponstel)statins
  • Meloxicam (Movalis, Melox, Recoxa, Mobic)
  • Nabumetone (Relafen)
  • Naproxen (Aleve, Anaprox, Midol Extended Relief, Naprosyn, Naprelan)
  • Nimesulide (Sulide, Nimalox, Mesulid)
  • Oxaporozin (Daypro, Dayrun, Duraprox)
  • Parecoxib (Dynastat)
  • Piroxicam (Feldene)
  • Rofecoxib (Vioxx, Ceoxx, Ceeoxx)
  • Salsalate (Mono-Gesic, Salflex, Disalcid, Salsitab)
  • Sulindac (Clinoril)
  • Tenoxicam (Mobiflex)
  • Tolfenamic acid (Clotam Rapid, Tufnil)
  • Valdecoxib (Bextra)

Yes, young lady in the third row. This is a bit more detailed a list than you’d expected? Okay, let’s go back to What Is It And How Did I Get It? Early Stage Chronic Kidney Disease for a simple explanation of NSAID.  Please turn to page 134.  Those of you with digital copies of the book, search the phrase.  Everyone have it?

Book CoverNSAID: Non-steroidal anti-inflammatory drugs such as ibuprofen, aspirin, Aleve or naproxen usually used for arthritis or pain management, can worsen kidney disease,    sometimes irreversibly.

So now we’re back to the original question.  How do NSAIDS further damage our kidneys?

But first I want to tell you just how important it is not to take them by sharing an anecdote with you. The first year after my CKD diagnose, my nephrologist spent a great deal of his time trying to convince me that I had caused by own CKD by taking NSAIDS very, very often.  He might have been right with another patient, but I was never one to rely on medications.

I would rather have used natural means to relieve myself of pain.  I did have arthritis and usually walked off the pain.  As for headaches, I would do the darkened room, rub the temples, mute the electronics and – my magic – ask one of my daughters to kiss my forehead routine. (Class!  No snickering.  It worked for me.)

Yet, overuse of NSAIDS was so common a cause of CKD that this was the only cause my nephrologist could see.  A while after this, studies showed that aging kidneys will lose their filtering power at the rate of ½% per year.  He switched to this cause, which I could more readily accept.

Yes, yes, I know we were going to discuss how NSAIDS further damage the kidneys today.

banner-nihlogoBy the way, as early as 1984, the National Institutes of Health at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1483278/?page=2 published a journal article from the Canadian Medical Association Journal entitled Adverse effects of NSAIDs on renal function.

Why no, I’m not procrastinating at all.  Here’s the answer to today’s question.

I found this explanation at a site that’s new to me (http://www.empowher.com/wellness/content/what-nsaids-do-your-kidneys):

All NSAIDs work by blocking the action of cyclooxygenase (COX). This enzyme performs a key step in the synthesis of prostaglandins [ me here with a definition of this word from the freedictionary.com at  http://medical-dictionary.thefreedictionary.com/Prostaglandins - a group of potent hormonelike substances that produce a wide range of body responses such as changing capillary permeability, smooth muscle tone, clumping of platelets, and endocrine and exocrine functions. They are involved in the pain process of inflammation.], which produce many effects in the body. Two of the effects are pain and inflammation for injured tissue. Other effects include protection of the stomach and homeostasis (regulation) of kidney function. The COX enzyme comes in two forms, COX-1 and COX-2. For a while, it was thought that COX-2 produces the pain and inflammation prostaglandins, while COX-1 produces the protective and regulatory prostaglandins.

The underlining is mine. That’s right, NSAIDS interfere with the regulation of the kidney function.  How?  Another good question from the middle of the room.

According to the National Kidney Foundation at http://www.kidney.org/atoz/content/painMeds_Analgesics.cfm,

“…because they reduce the blood flow to the kidney.”

So now we need to know why blood flow to the kidneys is important for CKD patients.

Blood Oxygen Cycle Picture 400dpi jpgIf you look at a picture of your kidney, you’ll see that blood with wastes in it is brought to the kidneys by the renal artery and clean blood is exited from the kidneys by the renal vein.  Your kidneys are already compromised which means they are not doing such a great job of filtering your blood.

Reduce the blood flow and you’re exacerbating the problem you already have… and all you need to do is avoid NSAIDS to avoid this problem. You’re right, class, that’s not exactly true, but it will help you preserve more of your kidney function.

Any questions for me?  For each other?

Well then, thank you for being such a willing and involved group of students.

While we all know this isn’t really a classroom and I’m not a doctor, this should answer a great many of the questions I’ve received via email or comments.

I’m also looking for first source research on both chia seeds and Goji Berries for a reader.  It seems there’s quite a bit of conflicting information about the safety of these two for CKD patients.  Please send along what you have, but first source only (not opinion, but fact).

It’s been my pleasure, folks.

Until next week,

Keep living your life!

Facebook and CKD

Victorian clockIt’s been a slow weekend with me really wondering if I were sick or just fatigued.  Fatigued won, so here I am back on track – just a little slower.  I love it when things work out the way I want them to, even if it’s an almost the way I want them to.

I’m lucky.  I have plenty of support here from Bear, the daughters and the almost sons-in-law, and the neighbors.  But many people don’t have others to talk to, much less do for them.  That’s why I’ll be writing about online support groups today.

The blog has a major presence on Facebook.  That started with Aaron Milton’s invitation to join P2P, (Peer To Peer) – Support for The Chronically Ill and Friends & Family several years ago.

This is a closed group of 6,198 members with invitation by email. As with most closed groups, the idea is for the members to be able to freely discuss whatever troubles them.  I’ve also noticed lots of support for other than illness issues here… and loads of sharing happinesses.Book Cover

Although I do not have a transplant, shortly after What Is It And How Did I Get It? Early Stage Chronic Kidney Disease was published, Rex and Linda Maus asked me to post this weekly blog on The Transplant Community Outreach’s page under the heading KIDNEY MATTERS.

I remember trying to dissuade them from this idea since I only knew about early stage, but they were adamant… and I’m still posting the blog there. This is a public support page with 5,633 members.  I’ve received a number of comments indicating that all stages of CKD patients are welcome.TCO

Then there’s The Renal Patient Support Group (RPSG) Facebook & BlogSpot, another closed group, with 5,305 members. I find this group extremely interactive concerning rides, requests for new information, and information about local treatment centers that you won’t find elsewhere. Their Shahid Muhammed has added a link to this blog on their page.

people talkingChronic Kidney Disease, End Stage Renal Failure is a smaller (71 members) closed group.  It is quite homey and inviting. When I go there, I feel like I’m visiting my neighbor.  That doesn’t mean it’s not worthwhile, though.  Sometimes you need that homey feel to understand what you’re reading. Betheny Whipple does a fine job of welcoming the members.

Kidney Disease, Diet Ideas, and Help 1 with 7,611 members is another closed group.  You can usually like a closed group to join or inbox the administrator.  This is how they describe the group:

“This is a closed, private group run by genuine Kidney patients for people with Kidney Disease including Dialysis to Transplant also for Carers to be able to offer and receive their support and knowledge in complete privacy from your friends on Facebook, to cover all aspects including discussing openly and sharing ideas on how each of our members is coping , how it affects us in day to day living, medications, side effects also their Diets , Drinks and lifestyle in accordance to our individual requirements and to also share ideas and recipes for CKD.
ALWAYS SEEK MEDICAL ADVICE BEFORE TRYING ANYTHING NEW. “

All the Facebook support groups remind you they are not doctors.  It is important for you to remember that so you check with your nephrologist before trying anything new.  Better safe than sorry.cadesus

Notice, too, that most support groups welcome family, friends, caregivers, and others somehow involved with the kidney disease patient.  The groups usually do not discriminate, but welcome all who are interested.

One of the newer groups is Kris Osborne’s Women’s Renal Failure Support Group, a closed group with 579 members. There is a free give and take about (surprise!) specifically women’s issues.  While I’m post-menopausal myself, I find I especially enjoy the younger women’s baby-shots-5posts about whether and if they can become pregnant, the hints and advice they give each other, and their generous support along this difficult journey for CKD sufferers. (Must be the wanna-grandmother in me rooting them along.)

Larry W. Green’s People of Color Renal, Kidney, Dialysis, and Transplant Support  is not restricted to people of color, although there are many posts that deal specifically with this group of particularly at risk for CKD people. It is a closed group with 207 members.  I think he nails the problem with reaching minorities in his description:1399816_10151944012192488_153026929_o

“People of Color Renal, Kidney, Dialysis and Transplant Support Group is for sharing information on people who are close to renal failure, dialysis or on dialysis or who have had a kidney transplant in the hopes of educating and offering support. Renal failure is the most prevalent among the minority communities but they are the least informed with options of dealing with this epidemic. This group is just not for minorities only but for all concerned with End Stage Renal Disease.”

By the way, the key word in all these support groups is ‘sharing.’

There are many other groups I post in because I feel they are so worthwhile in their efforts to educate CKD sufferers by sharing information AND by allowing them to vent, question, rant, and – of course – providing an opportunity for their members to support each other.sad face

Some of the others are: GM Kidney Information Network, Kidney/Renal Failure Support Group Durban, Kidney disease isn’t for sissies, Kidney Disease is Not a Joke Group, Kidney Disease in Saudi Arabia, Kidneys-R-Us (Not an organ selling site.  This is illegal in the U.S.), World Kidney Network, UK Kidney Support, National Kidney Foundation, Canadian Kidney Connection, and The Bhutan Kidney Foundation.

I know I’ve left out some really good support sites, but I’ll plead lack of space.  Some of the foreign sites are excellent and it’s fun to see how they deal with CKD differently than we do in the U.S.  Well, maybe my sense of fun is different from yours, but I enjoy it.

I haven’t included any addresses because all you need to do is go to Facebook, and cut and paste the group name in the search bar.  Ready, set, go!

Wait! I do want to end on a personal note of congratulations.  Friday night was the August birthday dinner for my sweet husband – Bear, my youngest daughter – Abby, and our wonderful almost son-in-law, Sean.  There were three different kinds of goodies, including ice cream cupcakes, a confetti cake (that I baked) and a Black Forest Cake.  Guess who didn’t have any of these.firworks

Until next week,

Keep living your life!

Apologies!

sorry face

 

Sometimes the formatting is lost while I’m writing the blog. This week it was lost just as I hit the publish button.

I realize how hard it is to read anything without paragraphs.  I immediately rectified the problem and the blog is now online with paragraphs.

Oh, can you ever forgive me!

Until next week,

Keep living your life!

Book Cover

Published in: on August 11, 2014 at 6:18 pm  Comments (2)  

What If You Don’t Go?

NYCWe just got back from New York, which included stays in three different places. Only one- my buddy’s pied `a terre in Bay Ridge had a private bath… one bathroom for the two of us.  In my niece’s house on Long Island, we shared two bathrooms with two other adults and four children.  In Manhattan, we shared two baths with twenty other tourists. This didn’t exactly make for instant bathroom use when you needed it.

To add insult to injury, I’ve grown very accustomed to Arizona’s immaculate public bathrooms with automatic faucets, flushes, soap dispensers, and towels. Let’s just say New York has quite a bit of room for improvement in this area. The end result was that I didn’t use the facilities as often as I needed to.

And I started wondering… what’s happens to the urine you don’t void?

toliet First things first: according to National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC), A service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)National Institutes of Health (NIH)  at http://kidney.niddk.nih.gov/kudiseases/pubs/yoururinary/#points,

“The amount of urine a person produces depends on many factors, such as the amounts of liquid and food a person consumes and the amount of fluid lost through sweat and breathing.”

It was New York; it was not only hot, it was humid.  I was drinking my allotted 64 ounces of liquid daily. I was breathing – as usual – and I was sweating (perspiring?) quite a bit. Of course, I was eating, too.

In What Is It And How Did I Get It? Early Stage Kidney Disease, I explained that Book signing

“Ingested food and liquid are digested in the stomach and bowels, and then absorbed in the blood.  A renal artery carries the blood waste and water to the kidneys while a renal vein carries the filtered and sieved waste from the kidneys…..Additional important jobs of the kidneys are removing liquid waste from your body and balancing the minerals in the body. The two liquid waste products are urea which has been broken down from protein by the digestive system and creatinine which is a byproduct of muscle activity.

The problem with unregulated minerals, such as sodium and potassium is that these minerals are needed to remain healthy but too much in the bloodstream becomes toxic. The kidneys remove these toxins and change them into urine that enters the bladder via the ureter.  Look at the picture of a front view of your internal organs …. [You can see]  the kidneys, then the ureter above the bladder.  Below the bladder is the urethra, the passage to the outside of your body. This is, of course, a highly simplified explanation.  The toxins would build up and poison you if the kidneys were damaged.”

This is right at the beginning of the book on pages 2 and 3.

Now that we know how it works, we can go back to my original question: What if you don’t urinate when your bladder is full?urinary

Well, maybe we should explore the bladder a bit more. WebMD at http://www.webmd.com/urinary-incontinence-oab/picture-of-the-bladder tells us the following about the bladder:

“The bladder stores urine, allowing urination to be infrequent and voluntary. The bladder is lined by layers of muscle tissue that stretch to accommodate urine. The normal capacity of the bladder is 400 to 600 mL. During urination, the bladder muscles contract, and two sphincters (valves) open to allow urine to flow out. Urine exits the bladder into the urethra, which carries urine out of the body.”

So, there I was with a full bladder and my body telling me to empty it, but I didn’t.  What happened to the urine?

bladderIt’s time to mention that the ureters don’t have any way to stop the urine flowing back into the kidneys if you don’t void.  There are two sphincters at the bottom of your bladder leading into the urethra, but you can only voluntarily control one of them.

Interesting fact: the urethra is longer in men because it passes through the penis.  Sorry fact: because our urethras are shorter, we women are more prone to urinary tract infections.

Uh-oh, urine was moving back into my poor, already compromised kidneys. This urine flow back could further damage the capillaries and tubules making them even less effective at filtering my blood. The kidney’s pelvis and calyces – their central collection region – might become dilated, causing hydronephrosis.  Or I might end up with a kidney infection from the bacteria forced back in.  This is called pyelonephritis.

Hang on there.  I’m going to use the medical dictionary at http://www.merriam-webster.com/medical  for some definitions here.

CALYX (plural ca·lyx·es or ca·ly·ces  also ca·li·ces): a cuplike division of the renal pelvis surrounding one or more renal papillae

CAPILLARY a: resembling a hair especially in slender elongated form   b: having a very small borekidney interior

HYDRONEPHROSIS: cystic distension of the kidney caused by the accumulation of urine in the renal pelvis as a result of obstruction to outflow and accompanied by atrophy of the kidney structure and cyst formation

RENAL PAPILLA: the apex of a renal pyramid which projects into the lumen of a calyx of the kidney and through which collecting tubules discharge urine

RENAL PELVIS: a funnel-shaped structure in each kidney that is formed at one end by the expanded upper portion of the ureter lying in the renal sinus and at the other end by the union of the calyxes of the kidney  

TUBULE: a small tube; especially: a slender elongated anatomical channel

But, wait before you get all excited about the damage I’ve done to myself – or worse, yourself. You should know it would take a tremendous amount of flow back before any of this happens.  Be aware of your urge to urinate, follow through if you can, and don’t worry if you can’t every once in a while (But remember that I’m not a doctor.) And I wonder why I’ve felt the urge to urinate the whole time I’ve been writing today’s blog.

Many thanks to the oddly informative website http://www.straightdope.com/ for pointing me in the right direction for answers to my question. kidney-book-coverI have a question for all of you:  I am thinking of turning the previous blogs into a book; is that something you’d be interested in?

Until next week,

Keep living your life!

Awwww, Do I Have To?

 

blues

That, ladies and gentlemen, is my internal dialogue every day when it’s time to exercise… except when my exercise for the day is Sustainable Blues at the Blooze Bar on Sundays at 5. (32 St.  & Cactus, just in case you were thinking of flying out to Phoenix, Arizona, to join us.)

Here’s a link to a YouTube showing me dancing there, after the lesson, with the charming Robert Mullen: http://www.youtube.com/watch?v=3XFAd6eh1MA. Just copy and paste it into your search function.

Anyway, back to the answer to my question. My answer to myself is inevitably a resounding, YES!!! Okay, I know I have Chronic Kidney Disease – still holding at stage 3, thank you very much – and need to exercise to slow down the progression of the disease.  But why?  I mean, how does that help?

I’m going to quote heavily from What Is It And How Did I Get It? Early Stage Chronic Kidney Disease here. I’ve already done the research to answer the question but, quite frankly, have forgotten what I found. It’s in the book.Book signing

Got your digital edition pulled up on your reading device so you can do a phrase search?  Great.  For those using the print version of the book (OMG, I feel like I’m teaching college again.), let’s turn to page 100 in Chapter 10: Getting the Necessary Exercise.

I knew exercise was important to control my weight.  It would also improve my blood pressure and lower my cholesterol and triglyceride levels. The greater your triglycerides, the greater the risk of increasing your creatinine.  There were other benefits, too, although you didn’t have to have CKD to enjoy them: better sleep, and improved muscle function and strength. But, as with everything else you do that might impinge upon your health, check with your doctor before you start.

I researched, researched and researched again.  Each explanation of what exercise does for the body was more complicated than the last one I read.  Keeping it simple, basically, there’s a compound released by voluntary muscle contraction.  It tells the body to repair itself and grow stronger. The idea is to start exercising slowly and then intensify your activity.

  Yikes!  There are some terms there those of you without the book may not know.  Here’s a little glossary for you:

blood pressure 300dpi jpgBlood pressure: the pressure exerted by the blood against the walls of blood vessels. Blood pressure depends on the strength of the heartbeat, thickness and
volume of the blood, the elasticity of the artery walls, and general health. (Encarta Dictionary)

Cholesterol: while the basis for both sex hormones and bile, can cause blockages if it accumulates in the lining of a blood vessel. (What Is It And How Did I Get It? Early Stage Chronic Kidney Disease)

Creatinine: chemical waste product that’s produced by our muscle metabolism and to a smaller extent by eating meat. (MayoClinic.org)

Triglycerides: a type of fat found in your blood. Too much of this type of fat may raise the risk of coronary artery disease, especially in women. (Medline Plus)

I’ve used different sources for the definitions so as to bring you the most easily understood ones.  After all, we’re not doctors here.GFR

Okay, I get it.  Exercise is absolutely necessary since CKD prevents your body from adequately filtering wastes – like creatinine – from itself.

Now my task was to find more exercise that I don’t mind doing… like blues dancing. Even though I seem to be dancing at half time, I come out of the bar thoroughly soaked despite the air conditioning.  That’s my personal indicator for effective exercise.

After almost a year (Bear’s surgery and recuperation, remember?) we went to the gun range yesterday.  I had decided several years back that I no longer want to compete, even though the Single Action Shooters’ Society competitions were fun to a point, but I did still want to target shoot.Rae%208x10%205792%20Sepia%20TinType[1]

On a whim, I started playing with the internet to see if target shooting burned enough calories to be considered exercise.

Whoopee!  It does!  It burns almost as many calories as half an hour on the stationary bike and uses a whole bunch of different muscles.  Don’t believe me?  Take a look at the calorie counter at: http://www.fitday.com/webfit/burned/calories_burned_Pistol_shooting_or_trap_shooting_standing.html.  Oh goody, another exercise I enjoy.

I have to admit that I enjoy the stationary bike, too, IF one of ‘my’ shows is on TV or I have a good book.  I’m wondering how long I can do this type of exercise, though, since my knees have started declaring their presence in a demanding, non-loving way. Enter knee supports.

And, yes, I still do the Leslie Sansone Walking Tapes I described in the book, but you’ve got to remember that your body becomes accustomed to a certain kind of exercise and then it isn’t as effective anymore… and I was wearing knee supports for this, too.

water walkingI do the water walking I wrote about a few blogs back (no knee supports) as often as I can.  Of course, no sooner did I decide I liked it then monsoon season started here.  It’s certainly not as bad as it’s been in years past, but I’m still not going into a pool when there’s rain.  And then, there are the haboobs (dust storms).  No thanks, I’ll find some kind of indoor exercise if there’s a warning for one of those.

By the way, we are not alone in exercising more.  We may do it because we have to, but the whole country is interested in exercising lately. According to the Centers for Disease Control and Prevention eNews headline of 5/15/14, “Neighborhood Support of Physical Activity on the Rise.”

I’ll be publishing this blog from New York where we will have traveled to see family and friends.  I’ve already got it figured out.  We’ll be gone eight days, so I’m taking the knee supports and plan to walk my brains out.

And stairs!  New York buildings have loads of stair.  My brother actually lives on the 11th floor of his building.  I could walk up to his apartment!

Well, unless another, more fun opportunity for exercise presents itself. I wonder if dragging two big pieces of luggage on rollers count?

Until next week (when I’ll be back in lovely monsoony, habooby Arizona),

Keep living your life!

Number Three on The List

“Other studies have suggested that once diagnosed with kidney disease, weight loss may slow kidney disease progression, but this is the first research study to support losing belly fat and limiting phosphorus consumption as a possible way to prevent kidney disease from developing.”Vassalotti Photo June2010  Dr. Joseph Vassalotti, chief medical officer at the National Kidney Foundation  11/3/13

Why has this little gem not caused more positive uproar?  We already accept that high blood pressure and diabetes are the two leading causes of Chronic Kidney Disease and that preventing each may lessen your chances of developing the disease.  Are we now looking at a third deterrent to developing CKD?

When I first wrote What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, I was so eager to spread the word that I called Dr. Vassalotti and asked him to read the book.  He was encouraging, and oh-so-willing to discuss anything CKD.  I immediately trusted and believed what he had to say… and believe him now, especially with the research studies behind him.

So what is phosphorous, anyway?  I defined it in my book as

“One of the electrolytes, works with calcium for bone formation, but too much can cause calcification where you don’t want it: joints, eyes, skin and heart.”Book Cover

Hmmm, I don’t see any relation to preventing CKD there.  I researched my usual sites and found that they also discussed the effects of phosphorus on the bones in CKD, but nothing about how limiting it might prevent the disease from developing. 

You can find an abstract of the original study (but it’s rough going unless you have a medical background) at: http://www.ajkd.org/article/S0272-6386(13)00825-1/abstract. By the way, this is a well-respected journal, should you be interested in taking a gander. 

It was too technical for me, so I keep referring to the Medical News Today article.  In research work, this is called a secondary source.

AJKD Okay, let’s take another look at The American Journal of Kidney Disease’s information about this study as it was covered by Medical News Today at: http://www.medicalnewstoday.com/articles/268144.php.

But first, here’s what I found about phosphorous at MedlinePlus, a service of the U.S. National Library of Medicine at The National Institutes of Health   (http://www.nlm.nih.gov/medlineplus/ency/article/002424.htm),

“It plays an important role in how the body uses carbohydrates and fats. It is also needed for the body to make protein for the growth, maintenance, and repair of cells and tissues.”

This is new information to me and makes sense according to the article in Medical News Today.  So we’re not just dealing with phosphorus’s importance in bone health, but in the body’s use of carbs and fats.

If phosphorous is not doing its job as an electrolyte, there’s a good chance you are gaining weight. Think about all those carbs and fats not properly being eliminated from your body.  More caloric intake equals fat development.  (I do realize we’re not taking exercise into account here.)

This sentence from The Huffington Post’s Healthy Living section last March caught my attention in a big way: “Belly fat is also much more inflammatory than fat located elsewhere in the body and can create its own inflammatory chemicals (as a tumor would). “ You can read the entire article at: belly fathttp://www.huffingtonpost.com/2013/03/21/body-fat-facts_n_2902867.html

Inflammatory?  Isn’t CKD an inflammatory disease? I went to The National Center for Biotechnology Information, which took me to the National Library of Medicine and finally to a National Institute of Health study at http://http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3332073/ for the answer.

“The persistent inflammatory state is common in diabetes and chronic kidney disease (CKD).”

This is a lot to take in at once.  What it amounts to is that another way to possibility prevent the onset of CKD is to lower your phosphorous intake so that you don’t accumulate belly fat.  All we need to know now is how this possible inflammatory state can cause CKD.

Thank you to Medical News Today for making it clear in this article:

“The researchers from Johns Hopkins claim that reducing your waist circumference and cutting down on dietary phosphorus have been linked to lower levels of protein in the urine (albuminuria). The presence of this protein in urine is one of the first indicators of kidney disease.”

chocolateI exercise.  I follow the kidney diet.  What was I eating before I developed CKD that might have contributed to its onset?

Although I considered myself a health nut, I loved chocolate…milk chocolate. Yep, high in phosphorous.

As I researched different sites, I realized being a health nut was exactly the opposite of what I should have been.  All of the following are on the majority of high phosphorous food lists: quinoa, oats, bran, milk, cheese, whole wheat, whole grain, dried beans or peas, brown rice or wild rice.

If you’re identifying with me, do not – I repeat: do not – beat yourself up.  Remember the connection between high phosphorous levels, belly fat, and CKD is new information.

Here’s a hint: avoid processed foods since they have phosphorous added to extend their shelf life.  I learned that somewhere along the way in my CKD journey, probably from my renal nutritionist. You can also add a recent product, flavored water, to the list of high phosphorous foods to avoid.

Unfortunately, phosphorous is not usually listed on labels.  Although, I did see PHOS listed once or twice.  Hopefully, it will become common usage to list phosphorous in the near future.

When I was a young woman, I wondered why I should keep up with the latest scientific research.  After all, new discoveries were making what I already learned obsolete on a daily basis.  Now I know why.

I have two daughters, two step-daughters, three almost sons-in-law, and a husband who loves me.  I want to be around to be part of their futures.  If it takes constant monitoring of the new CKD information, I’ll do it.

We leave for New York on Wednesday and I’m finally getting excited.  One or two medical emergencies in New York both kept me from being excited and wanting to hurry up to be there at the same time.  They are being resolved as I write.

AND I get to see Nima, my one child still living in New York. Oh, and friends of very, very long standing and my niece and her family.  Hah! I’m so excited now I can barely sit still to type. Nothing like dancing at the computer.NYC

Until next week when I’ll publish from The Big Apple,

Keep living your life!

It’s the Long Promised Sulfa Blog!

Since I mentioned sulfa drugs in a blog a few weeks ago, I’ve been asked some questions, including one wanting to know if these drugs could have caused a particular reader’s CKD.  Although I used the British spelling, I also wrote about my experience with sulfa drugs in What Is It And How Did I Get It? Early Stage Chronic Kidney Disease (page 90):

I knew I wasn’t feeling well at all, so I called my primary care physician for an appointment.  Her medical assistant  [M.A.] told me my doctor was out of town for a Book Coverweek and to go to the urgent care center near my home since, as a CKD patient, I should not wait.  When I told the receptionist at the urgent care center that I had CKD, she sent me to the emergency room at the local hospital in case I needed blood tests or scans for which the urgent care center was unequipped.  The hospital did run a scan and blood tests.  This way, they were able to see if I had an infection, blockage or some imbalance that might not only make me feel sick but worsen the CKD.

I already knew I had a higher than usual white blood cell count from my previous fasting blood test for the nephrologist about a month before the emergency room visit.  He’d felt it was not significantly high enough to indicate an infection but was, rather, a function of a woman’s anatomy.  Women have shorter internal access to the bladder, as opposed to those of men.  Looked like my nephrologist might have misjudged.

However, he quickly picked up that the medication prescribed by the emergency room physicians, despite my having reiterated several times that I have CKD, was a sulfur based drug.  He quickly made a substitution, saving possible further damage to my kidneys.  The hospital insisted I only had Stage 2, so this was a safe drug for me.  I was nervous about this as soon as they became defensive about prescribing this medication.  You need to stick to your guns about being taken seriously when it comes to CKD.

All right, let’s go back to basics, first.  The Medical Dictionary at http://medical-dictionary.thefreedictionary.com/sulfa+drug defines sulfur drug as

“Any sulfur-based antibiotic, in particular sulfonamides.”

sulfaGreat. Now we just need to know what sulfonamides are.  The same dictionary tells us these are

“medicines that prevent the growth of bacteria in the body”

and that they are frequently used with urinary tract infections. Yet, there’s also a warning that people with kidney disease should be sure to warn their doctors about their kidney disease should one of these drugs be prescribed.

Well, why do you need to avoid such medications with CKD? As you already know, compromised kidneys don’t do the job they were meant to do as well as they did before we had CKD when it comes to eliminating drugs from our bodies.  The kidneys are the organs that clear this particular drug from the body, not the liver (which is another organ that can clear drugs from your body). That means the drug may build up… and cause problems.

Here’s one of those problems from MedicineNet.com at http://www.medicinenet.com/sulfonamides-oral/article.htm#what_are_the_side_effects_of_sulfonamides,

“Other rare side effects include liver damage, low white blood cell count (leucopenia), low platelet count (thrombocytopenia), and anemia. Formation of urinary crystals which may damage the kidney and may cause blood in the urine. Adequate hydration is needed to prevent the formation of urinary crystals.”

We are already prone to anemia since we’re not producing as many red blood cells as we could (another job our kidneys have). Sure, adequate hydration may prevent these crystals, but just how much is adequate.  After all, as CKD patients, we do have fluid restrictions.

As for actually causing kidney damage, yes, sulfa drugs can do that. As The National Kidney Foundation phrases it at http://www.kidney.org/atoz/content/kidneysnottowork.cfm:NKF-logo_Hori_OB

“Other things that can damage the kidneys include kidney stones, urinary tract infections, and medications or drugs.”

 An allergic reaction to sulfa drugs can also cause kidney damage.  Allergies.About.Com at http://allergies.about.com/od/medicationallergies/a/sulfa.htm reports:

“People with sulfa allergy may also develop a type of hepatitis, and kidney failure, as a result of sulfa medications.”

However, they are careful to point out that this is an uncommon reaction, occurring in less than 3% of users.

The antibiotics Bactrim and Septra are two of the most common sulfa drugs prescribed today.  Most often, they’ll be prescribed for a urinary tract or bladder infection.  What makes it harder to pinpoint which drugs are sulfa drugs is that they don’t always have ‘sul’ in their name.

That’s also what makes it so important for you to impress upon your physician that you

the medical alert plate1. do have CKD and

2. will not be taking any sulfa drugs

Wearing a medical alert bracelet might help you remember to be downright insistent that you will NOT be taking any sulfa drugs.

The emergency room doctor did try to speak with my nephrologist before prescribing the drug for me, but couldn’t get through… a situation we’re all familiar with.  He was not a specialist and made a judgment call that sulfa drugs would be all right for me.

Yet, when I finally got a response to my own calls to the nephrologist, he was horrified.  This guy was not an emotional man so this really put me into a panic, especially since CKD was so new to me and I didn’t really know the rules yet.

Some blogs just flow and some are hard to write.  This was one of the hard ones.  I spent more time trying to tease information from the internet and my source books than writing.  I gather this is neither a popular topic nor one that is usually visited.  That makes me even more hopeful that I’ve answered your questions about CKD and sulfa drugs.NYC

I left NY in 2002, but we’re going back for a visit soon.  Nima, my NY daughter, will be taking me to High Line and The Urban Museum.  Are there any other new places you think we should visit?  While I lived there, the city was our playground… but it’s been a dozen years.

Until next week,

Keep living your life!

How I Connect Coyotes and CKD

Sunday evening is the Sustainable Blues dance lesson at the Blooze Bar.  When Abby teaches, I go and then I do some marketing on the way home.blues

When Bear was helping me unload the groceries from my car last night, he pointed out a coyote casually walking down the street.  We’re only a quarter of a mile from an arroyo and often see wild life there, but other than bunnies and Gambrel Quail, not in front of the house.

This means Bella needs to stay in the house from before dusk until after dawn since those are prime hunting times for the coyote.  Her dog door was closed last night.  While she is a medium sized dog, I wouldn’t be surprised if a pack of coyotes could devour her… and that’s why IMAG0269 (1)they’re on our block.

These creatures are hungry and they want red meat.  They’re adaptable and will eat anything when they’re hungry enough – even garbage – but 90% of their diet consists of red meat when they can find it.  Notice I’m not citing any websites here.  This is common knowledge when you live in the desert, something I’ve done for the last dozen years.

The coyote sighting got me to thinking.  They eat red meat.  Humans do, too.  Yet, as Chronic Kidney Disease patients we’re urged away from this practice.  I accept it, but I’ve forgotten why and thought you might have, too.coyote

As usual, let’s start at the beginning.  Precisely what is ‘red meat’? According to the Bing Dictionary, red meat is “meat that is red when raw: meat that is relatively dark red in color when raw, e.g. beef or lamb.”

I don’t eat lamb and never have due to some childhood questioning as to why a child should eat another child. (Okay, so I was a deep thinker even then.) Red meat was the staple of the family’s diet when I grew up and no meal was considered complete without it. That’s not the case now.

red meatWebMD has a truly illuminating three page article debating the merits and demerits of red meat at http://www.webmd.com/food-recipes/features/the-truth-about-red-meat. Most of it deals with the protein and fat content.  That is something that should concern us as CKD patients.    (It also explains why pork is considered a red meat rather than a white meat as a former colleague at Phoenix College tried to convince me.)

Okay, so fat – and hence, cholesterol – is something that could adversely affect your heart, not great for anyone including us.  But, as CKD sufferers, it’s more the protein content of red meat that concerns us right now.

In What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, protein is defined as “Amino acids arranged in chains joined by peptide bonds to form a compound, important because some proteins are hormones, enzymes, and antibodies.”  That’s on pages 134-5 for those of you with a print copy of the book.  Those of you with a digital copy, use the word search function.

That definition says a lot.  Let’s take it bit by bit.  Amino acids, simply put, are “any one of many acids that occur naturally in living things and that include some which form proteins.”  Thank you, Merriam Webster Dictionary.  Did you notice that they may form proteins?  Keep that in mind.Book Cover

So what are peptide bonds, then? This is a bit more complicated, so I went to Education Portal at http://education-portal.com/academy/lesson/peptide-bond-definition-formation-structure.html#lesson for the most easily understood definition: “Peptide bonds are the key linkages found in proteins. These bonds connect amino acids and provide one of the key foundations for protein structure.”  Again, proteins.  This is a bit circular, but the important point here is that both are involved in the production of protein.

The renal diet I follow restricts my daily protein intake to five ounces a day, but why? Back to What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, page77 this time:

So, why is protein limited? One reason is that it is the source of a great deal of phosphorus. Another is that a number of nephrons were already destroyed before you were even diagnosed. Logically, those that remain compensate for those that are no longer viable. The remaining nephrons are doing more work than they were meant to. Just like a car that is pushed too hard, there will be constant deterioration if you don’t stop pushing. The idea is to stop pushing your remaining nephrons to work even harder in an attempt to slow down the advancement of your CKD.  Restricting protein is a way to reduce the nephrons’ work.

Your kidneys have about a million nephrons, which are those tiny structures that produce urine as part of the body’s waste removal process. Each of them has a glomerulus or network of capillaries.  This is where the blood from the renal artery is filtered.  The glomerulus is connected to a

Glomerulus-Nephron 300 dpi jpgrenal tubule, something so small that it is microscopic. The renal tubule is attached to a collection area.  The blood is filtered. Then the waste goes through the tubules to have water and chemicals balanced according to the body’s present needs. Finally, the waste is voided via your urine to the tune of 50 gallons of fluid filtered by the kidneys DAILY.  The renal vein uses blood vessels to take most of the blood back into the body.

For those of you who may have forgotten, phosphorus isn’t troublesome in early or moderate stage CKD, but can be in Stages 4 and 5.  Phosphorus works in conjunction with calcium to keep our bones and teeth healthy, but it has other jobs, too.  Compromised kidneys cannot filter out enough of this, though.  That can lead to calcification in parts of the body.

Confession time: after six years of following the Northern Arizona Council of Renal Nutrition Diet, I am not attracted to red meat.  Bear’s family traditionally has standing rib roast for Christmas and ham for Easter.  I will gladly cook them for the family – or buy them already cooked – but I’m fine with the steamed vegetables and a taste, a little one at that, of each of the meats. We don’t buy red meat when we market (except when Bear has an urge) and rarely eat it in restaurants. It wasn’t that hard to get out of the habit of always having red meat.

Until next week,

Keep living your life!

I Can Hear The Blood Rushing in My Ears

July 4thHope you had a wonderful Independence Day weekend. Ours was filled with water walking thanks to the Vlasitys, Olsens, and Artecs who all offered their pools for Bear’s physical therapy, board games after we discovered our neighbors – Linda and Mike Olsen – played our favorite domino game, a movie (Train Your Dragon, Two… oh yes!), plus dinner out at Macaroni Grill, a restaurant where I actually have choices that fit in the renal diet. We even got to the only remaining bookstore on our side of The Valley of The Sun. Quiet, fun activities.

During that time, my blog was in the back of my mind. It’s always in the back of my mind. Which is why I can’t stop writing it, by the way. This weekend, I kept thinking about the subtle connection between hearing and Chronic Kidney Disease.

The topic came about in the usual way: I complained of hearing poorly and my ever vigilant primary care doctor, Dr. Zhao of Deer Valley Family Practice right around the Arizona style corner (three and a half miles), suggested I might want to have my hearing tested by an audiologist. This was right after I passed the Medicare Annual Wellness Visit hearing test with flying colors despite my complaints.

Off I went to Dr. Kristin Wells of North Valley Audiology… for the third time in five years. Her assessment was that my hearing was just fine. Go figure, but she did applaud me for telling her I had CKD (and sleep apnea, but that’s another story…uh, blog).test

Why did I do that you ask? Well, as I wrote on my March 15th, 2011, blog during National Kidney Month:

“Research shows that hearing loss is common in people with moderate chronic kidney disease. As published in the American Journal of Kidney Diseases and highlighted on the National Kidney Foundation web site, a team of Australian researchers found that older adults with moderate chronic kidney disease (CKD) have a higher prevalence of hearing loss than those of the same age without CKD.”

You can enter hearing in the topic search to the right of this blog read the rest of that blog.

earHow moderate CKD and hearing are connected is another matter, one that apparently isn’t as well documented. Here’s what I found at http://www.hear-it.org/More-than-half-with-Chronic-Kidney-Disease-have-hearing-loss – which has an online hearing test – and not most, but all of the other sites I searched. This comes from the same study I used in my 2011 blog. That study was completed in 2010… four years ago.

“University of Sydney, said:
The link between hearing loss and CKD can be explained by structural and functional similarities between tissues in the inner ear and in the kidney. Additionally, toxins that accumulate in kidney failure can damage nerves, including those in the inner ear. Another reason for this connection is that kidney disease and hearing loss share common risk factors, including diabetes, high blood pressure and advanced age.”cochlear tissue

I couldn’t visual this inner ear tissue, so I started looking for images. You can see them all over this page.

Suddenly it became clear. If toxins are – well – toxic to our bodies, that includes our ears. My old friend The Online Etymology Dictionary at http://www.etymonline.com/index.php?term=toxic tells us the word toxic is derived directly from Late Latin toxicus “poisoned.”

Now I got it. Moderate CKD could be poisoning our bodies with a buildup of toxins. Our ears and the nerves in them are part of our body. Damaged nerves may cause hearing loss. I’d just never thought of it that way before. Sometimes all it takes is that one last piece of the puzzle to fall in place.

Hmmm. High blood pressure is the second most common leading cause of CKD and it can also lead to hearing loss. Let’s take a look at that.

ear tissueAccording to WebMD at http://www.webmd.com/a-to-z-guides/hearing-loss-causes-symptoms-treatment “Certain illnesses, such as heart disease, high blood pressure, and diabetes, put ears at risk by interfering with the ears’ blood supply.” Of course!

I went right to What Is It And How Did I Get It? Early Stage Chronic Kidney Disease to figure out how. On page 97 (you know the drill: digital readers use the search function), blood pressure 300dpi jpgthere is a diagram from The National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health that demonstrates how high blood pressure is caused… and if you read on, you’ll read about the problems high blood pressure causes.

This is the sentence that clarified the issue for me (page 99): “Humans have 10 pints of blood that are pumped by the heart through the arteries to all the other parts of the bodies.” That would include the ears. Moderate CKD might mean that blood is tainted by the toxins our compromised kidneys could not rid us of.

I had been hoping for more recent research, but sometimes you just have to deal with what you get.

Talking about getting, Dr. Nick Held of ASU sent a long involved comment. Basically it is full of opportunities to study about Chronic Kidney Disease. While most of it is a bit too medical for me, you may be looking for just this opportunity, so here’s the address: http://www.nejm.org/toc/nejm/medical-journal. You’re looking for Vol. 371, No. 1. Many thanks, Nick, and thank you for the accolades, too.

Things are quiet here this summer. No word yet from either the radio show or the article in Medicare’s publication about when they’re going to happen. No word on SlowItDown either. I’ll bet people are going directly to DaVita.com for their Chronic Kidney Disease education. You are, aren’t you? Hey, get that CKD education any way you can.

The book lives! I do believe there may be another book about CKD fairly soon: The Book of Blogs. This blog was born when an Indian nephrologist contacted me to explain that he Book Coverthought What Is It And How Did I Get It? Early Stage Chronic Kidney Disease was just what his new patients needed, but they were too poor to even pay bus fare to keep their appointments.

I was very new to social media, but figured if I wrote a blog, he translated it and then printed it, his patients who could keep their appointments could read it and bring it back to their villages with them for other CKD patients to read.

Now I’m looking at it the other way: I have more than a few readers who are not comfortable with anything electronic. They need a book in print. I’m seeing what I can do about that, folks.

Until next week,
Keep living your life!

Life Is Just A Bowl Of Cherries

Here I was all ready to write about sulfur drugs and CKD or hearing and CKD when I received an email from  Cindy Bruggner who’d just bought some good looking bing cherries but wasn’t sure whether to eat them or not.  We all know that cherries simply don’t last that long, so – Cindy – this one’s for you.

cherries

The big issue about eating cherries when you have Chronic Kidney Disease is their potassium content. I went straight to What Is It And How Did I Get It? Early Stage Chronic Kidney Disease to see what I’d written about this. In the Glossary (on page 134) I found this definition:

“One of the electrolytes, important because it counteracts sodium’s effect on blood pressure.”

While that’s true, we’re going to need more to help Cindy out. So I turned to Chapter 8: The Renal Diet (page 75).

“Potassium is something you need to limit when you have CKD despite the fact that potassium not only dumps waste from your cells but also helps the kidneys, heart and muscles to function normally.  Too much potassium can cause irregular heartbeat and even heart attack.  This can be the most immediate danger of not limiting your potassium….

Book Cover…Check your blood tests. 3.5-5 is considered a safe level of potassium.  You may have a problem if your blood level of potassium is 5.1-6 and you definitely need to attend to it if it’s above 6.  Speak to your nephrologist ….”

I checked with the National Kidney Foundation http://www.kidney.org/atoz/content/potassium.cfm about those levels just to be sure they hadn’t changed since the book was published.  They haven’t.

That got me to wondering why cherries are considered good for the general population, but not CKD patients. So, of course, I did a little research.  Green and Healthy at http://www.greenandhealthy.info/kidneydisease.html#ckd suggests those without kidney disease eat cherries for the following reason:

“According to research from Michigan State University tart cherries contain anthocyanins [Thought you might like to know this means natural pain relieving and anti-inflammatory properties], bioflavonoids, which inhibit the enzymes Cyclooxygenase-1 and -2, and prevent inflammation in the body. These compounds have similar activity as aspirin, naproxen and ibuprofen.”

Sounds good to me since we can’t take some of those pain relievers, but cherries have the same effect.  Something was nagging at me though.  Back to What Is It And How Did I Get It? Early Stage Chronic Kidney Disease. As I read page 3, I realized why:

“The problem with unregulated minerals, such as sodium and potassium is that these minerals are needed to remain healthy but too much in the bloodstream becomes toxic. The kidneys remove these toxins and change them into urine that enters the bladder via the ureter.”kidney location

Well, healthy kidneys do, but just how effective are your compromised kidneys at doing this job? I went to DaVita at http://www.davita.com/kidney-disease/diet-and-nutrition/lifestyle/top-15-healthy-foods-for-people-with-kidney-disease/e/5347, but in addition to the usual warnings about potassium levels, I found this:

“1/2 cup serving fresh sweet cherries = 0 mg sodium, 160 mg potassium, 15 mg phosphorus

Cherries have been shown to reduce inflammation when eaten daily. They are also packed with antioxidants and phytochemicals that protect the heart.”

Does that mean they’re good for CKD patients?

From my reading, I’ve also garnered the information that cherries can help with iron deficiencies, lower blood pressure, improve sleep, help with gout, and lower the risk of heart disease.

Or can they? Remember that too much potassium can actually cause an irregular heartbeat or possibly stop your heart.

Oh Cindy, I’m sure I’ve only added to your confusion.  Watch your potassium levels.  Look them up on your last blood test.  Why not give your nephrologist a call, too, just to be sure.  Do you have a renal nutritionist? He or she would know far better than I since this question of whether to eat the cherries or not is so individualized.

Then we have stages.  I am stage 3, which I used to think was early stage (hence the book’s title) but now realize is moderate damage.  I don’t know what stage Cindy is, but I do know the dietary rules change when you reach end stage and I’m going to guess they’re even different for those on different kinds of dialysis and those who are transplants.stages chart

So Cindy’s question is sort of asking me which sexual position is best for her.  I’m purposely being provocative here so that you’ll see just how individualized the renal diet is. What’s best for you depends on your needs.  Call the nutritionist!

Knowing End Stage Renal Disease is not my area of expertise, I took a peek at National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC), A service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)National Institutes of Health (NIH), at http://kidney.niddk.nih.gov/KUDiseases/pubs/eatright/index.aspx#potassium anyway to see what dialysis patients can eat.  Apparently, potassium could be a problem here, too. This is what I found:

“Potassium is a mineral found in many foods, especially milk, fruits, and vegetables. It affects how steadily your heart beats. Healthy kidneys keep the right amount of potassium in the blood to keep the heart beating at a steady pace. Potassium levels can rise between dialysis sessions and affect your heartbeat. Eating too much potassium can be very dangerous to your heart. It may even cause death.”

Okay, cherries can be a problem.  Then I started wondering if it mattered what type of cherries they were. I found at least 18 different kinds, but none of the websites discussed potassium.

I learned more about cherries and potassium than I thought I wanted to.  I’m sure you did, too, but I offer you the same advice I offered Cindy: check with your renal nutritionist or nephrologist – always.  I am not a doctor, but rather someone who researches CKD on a layman’s level.  Cindy, thanks for asking.

Holy cow!  July 4th weekend is sneaking up on us!  I’m looking forward to as much water walking as we can get in since two, not one, but two neighbors have offered us the use of their backyard pools – one actually a lap pool – and we have discovered our neighborhood pool which charges only $20 per person a season.  We may not have the ocean out here, but we’ve got lots of pools.  Here’s hoping you enjoy your holiday weekend.

Kidney Book CoverWhoops!  Almost forgot to include that SlowItDown will now be sharing the book’s Facebook page, twitter account, website (http.gail-rae.com), email address (myckdexperience@gmail.com) and telephone number (602-509-4965).  I was getting run down trying to run the two separately in addition to my personal one!

Until next week,

Keep living your life!

Not ON the Water, IN It

It’s hot, 112 degrees already and summer has just started. Much as I’d love to, I can’t stay in the house writing all day, every day. I also need to exercise on a daily basis… as do you if you have Chronic Kidney Disease.

What’s that? Why do you have to exercise if you have CKD, you ask? Let’s go back to What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, page 100, for the answer to that one. (Digital book owners, don’t forget to use the search document function instead of the page number.)Book Cover

“I knew exercise was important to control my weight. It would also improve my blood pressure and lower my cholesterol and triglyceride levels. The greater your triglycerides, the greater the risk of increasing your creatinine. There were other benefits, too, although you didn’t have to have CKD to enjoy them: better sleep, and improved muscle function and strength. But, as with everything else you do that might impinge upon your health, check with your doctor before you start exercising.

I researched, researched and researched again. Each explanation of what exercise does for the body was more complicated than the last one I read. Keeping it simple, basically, there’s a compound released by voluntary muscle contraction. It tells the body to repair itself and grow stronger. The idea is to start exercising slowly and then intensity your activity.”

I’ve mentioned water walking as an exercise and gotten quite a few questions about it. I have to admit I’d never heard of it before I moved to Arizona and met Bear. His house is in a senior citizen community that has a community center with a water walking pool.

It was exciting to be doing something I’d never done before and questioned him unmercifully, although he kept telling me you get in a pool that has lanes and walk. I could not visualize it, so I went online to see what it looked like. Then I couldn’t imagine what it would feel like, especially for someone who always wants to be near water rather than in it.

The pool was enormous to my water walking pool virgin eyes. There were shady parts and sunny parts. Uh-oh, I was going to have to get a hat with a bigger brim to protect my neck and shoulders from the sun, too. Oh, and water soluble sunscreen.sun hat

I couldn’t make sense of the arrows on the pool floor and the curvy shoulder high dividing walls between lanes until I was actually in the pool. I started out in waist high water following the arrows and keeping in the lanes they pointed to on different sides of the dividers until I found myself in chin high water when we completed our first circuit.

water walkingNow it all made sense. It was just like traffic lanes and directional markings on the road when you drive! Of course, waist and chin high are relative. I’m 5’5’, so Bear’s 5’10” meant the water was not as high on him.

There’s another benefit to water walking if you have arthritis. You’ve read my complaints about arthritis here and even in the Wall Street Journal column by Laura Landro about CKD Awareness activists (I still prefer being called an advocate). If you missed it, you can read that article in the January 20th, 2014 blog.

I went to the site of The Arthritis Foundation at http://www.arthritistoday.org/what-you-can-do/staying-active/activity-types/water-walking.php and read the following:

“Like all water exercises, water walking is easy on the joints. ‘The water’s buoyancy supports the body’s weight, which reduces stress on the joints and minimizes pain,’ says Jones [an aquatic coordinator]. ‘And it’s still a great workout. Water provides 12 times the resistance of air, so as you walk, you’re really strengthening and building muscle.’ You do not bear weight while swimming and walking, however, so you’ll still need to add some bone-building workouts to your routine.”

My almost constantly complaining knees were quiet in the water walking pool. My slightly painful hip didn’t seem to hurt. And, best of all, my elbows weren’t aching. I’m sold. What makes it even better is that water walking strengthens your muscles.

The bottom of the pool is purposely rough to prevent slips. After one circuit without water shoes, I knew I’d have to get some. While they were not severely damaged, I did notice annoying little scraps and cuts on the soles of my feet, especially my toes.water walking shoes

That probably means I was walking on my toes, something the Mayo Clinic at http://www.mayoclinic.org/healthy-living/fitness/multimedia/aquatic-exercise/sls-20076730 suggests you NOT do.

“In water that’s about waist-high, walk across the pool swinging your arms like you do when walking on land. Avoid walking on your tiptoes, and keep your back straight. Tighten your abdominal muscles to avoid leaning too far forward or to the side.”

I’ll also have to work on tightening my abdominals since I walked into the wall or the dividers a few times. I knew I wasn’t drunk (I don’t drink), so now I know why this happened.

A non-medical site, Ask.com, had some information about how you can water walk in any water. After all, not everyone has access to a water walking pool.

• Walk forward and backward with short steps, long steps, average steps, or step kicks.

• Move in a pattern of a circle or square. Be sure to go in both directions to balance the demands on your body.

There are more suggestions about technique at their site: http://spas.about.com/od/exercise/a/waterwalking.htm

SlowItDown business card

The big news here these days is that SlowItDown and What Is It And How Did I Get It? Early Stage Chronic Kidney Disease are combining their Facebook and Twitter accounts. When you want to catch up with SlowItDown, just go to What Is It And How Did I Get It? Early Stage Chronic Kidney Disease’s Facebook and Twitter accounts. There will still be a daily tidbit about our disease on both. It occurred to me that I was doing double duty (Say that three times fast!) since both deal with the same issue.

Until next week,
Keep living your life!

Their Father’s Food  

GmM8B2ylPUP0lIuKR9OqrzOqFEOtJtRaf2Rpt6ncsBkHere’s hoping you all enjoyed your Father’s Day yesterday.  Although we were missing Nima who lives in New York and Kelly and Sean who both had to work, it was a very good day for us.  Lara’s love played the guitar for a sing-a-long and Darin showed us the newspaper article which quoted him.  Abby had to leave early for the Blues dance lesson she teaches, but we’d had a good, long afternoon together by that time.  Long enough that Lara finally got to really just talk with her dad.

It was all good, except the food.  Bear doesn’t have Chronic Kidney Disease and usually follows the renal diet with me anyway.  Yesterday was the exception.  Since we finally figured out that I’m not Bear’s mother and he’s not my father, this was the last Mother’s Day (He always makes me a bar b q with food I can eat.) or Father’s Day we would host. I gave him a pad and pen and said, “Write down your menu.”

Bear was raised in the Midwest and eats a lot of food that’s still strange to this ex New York Jew.  Let’s start with the honey baked ham.  Okay, he spent his childhood summers on his grandparents’ farm; I get that. I grew up not eating ham because it’s not kosher and we were practicing Jews.  But why isn’t it on the renal diet?ham

Thank you Wedliny Domowe at http://www.meatsandsausages.com/hams-other-meats/hams for this information. Ham is a processed meat.  It can be cured in a number of ways, but most include the use of salt, and nitrites, which themselves are either sodium or potassium. The dry method of curing uses salt, while the wet method uses brine. And what is brine but a solution of sodium in water? And then there’s smoking. {Ack! Smoke contains formaldehyde and alcohol.}

We know as CKDers that we need to limit our sodium intake. As I wrote in What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, pages 73-4,

“Basically, sodium balances fluid levels outside your cells.  You need it because it is responsible for watering your cells.  This watering is the prompt for potassium to Book Coverdump waste [cell process by-products] from your cells….If you have damaged kidneys and cannot excrete most of the sodium you ingest, you’re up against higher blood pressure which may worsen your CKD which may further cut down on your elimination of sodium and so on and so forth in an ever spiraling cycle. In addition, for CKD patients, too much sodium causes fluid retention, thereby causing swelling, further resulting in weight gain, leading to shortness of breath.”

And let’s not forget that high blood pressure is the second leading cause of Chronic Kidney Disease.

Well, what about the potassium in the nitrite used in preserving the ham.  Why do CKDers have to limit the amount of potassium they ingest? By the way, too much sodium can increase your need for potassium.

But isn’t potassium good for you?  After all, it does help the heart, muscles, and our beloved kidneys function normally as well as dumping wastes from our cells. Here’s the kicker, an excess of potassium can cause irregular heartbeat and even heart attack.

We are not your everyday people whose kidneys can filter any excess potassium from our bodies.  We have compromised kidney function which could mean a buildup in potassium.  No wonder CKD may lead to cardiovascular problems!potassium

I’m almost afraid to look at the rest of Bear’s Father’s Day menu.  He also requested cold cuts of roast beef.  Uh-oh, that’s another cured meat.  Cold cuts also tend to be fattier cuts and have nitrates, which are different than the nitrites discussed above.

According to Dictionary.com at http://dictionary.reference.com/browse/nitrate, a nitrate is “a salt or ester [That’s an organic compound.] of nitric acid.”  Wait a minute!  Nitric acid is a corrosive liquid, as most of us learned way back in high school.

And, as Dr. Veeraish Chauhan (one of the nephrologists in Florida that received a donation of the book this past March when I was there) wrote in his April 6, 2013 {our wedding day!} blog, “… red meat could be a big source of uric acid, which has been shown to be associated with worsening of CKD.”

Red meat contains cholesterol.  Fattier cuts contain more cholesterol. This substance can clog the arteries, leading to heart problems.  We already have a higher risk of heart problems simply because we have CKD.  Why raise the risk???

And then we have the sweet potato casserole.  Sweet potatoes?  I don’t remember the last time I had one of those. Talk about potassium overload!  We already discussed the CKDers’ problems with that.sweet potato casserole

Well, what about the green bean casserole?  I didn’t have to eat the crispy, fried onions on top of it. But it’s in creamed mushroom soup.  Oh, right.  Creamed soup is high in phosphorous. The National Kidney Foundation at http://www.kidney.org/atoz/content/phosphorus.cfm tells us, although phosphorus is necessary to work with calcium for healthy bones:

“High phosphorus levels can cause damage to your body. Extra phosphorus causes body changes that pull calcium out of your bones, making them weak. High phosphorus and calcium levels also lead to dangerous calcium deposits in blood vessels, lungs, eyes, and heart. Phosphorus and calcium control is very important for your overall health.”

The orange mimosas seemed to delight everyone but Abby.  I didn’t even try one.  I.just.don’t.drink.  Too much alcoholism in my family history.  Anyway, while the orange juice in this drink didn’t seem to be a problem, the champagne was actually good for us, according to the National Institutes of Health.

Their MedlinePlus at http://www.nlm.nih.gov/medlineplus/news/fullstory_145838.html posted new findings about the benefits of wine.  Champagne is a wine.  Surprise!  If you have CKD, wine in moderation may help protect you from that health disease you’ve at risk of.carrot cake

I am not even going to analyze the carrot cake from Cheesecake Factory.  That is so bad for you on so many levels!  I am so glad I researched these foods AFTER the celebratory meal so I wasn’t tempted to spout this information to those enjoying the food.

I was thinking of combining the SlowItDown and book FB pages, twitter accounts, and website.  Any thoughts of your own about this?

Until next week,

Keep living your life!

Kidney Book Cover

Baby, It’s Hot Outside

I just caught up to the fact that it’s June.  No, it wasn’t the calendar that told me, but the temperature.  We live in Arizona and its hot, dry heat or not.  That means cooling off any way you can. IMG_0584

This weekend, we finally took the three hour round trip drive to visit my friend and her family.  Her five year old daughter proudly showed off the family’s new addition since I’d been there last – a wonderful, cooling swimming pool.  I was tempted, but the 105% temperature kept me inside with the air conditioning.

That’s when I was offered some filtered water.  Did I want ice? I was asked.  I immediately shook my head.  “CKD, no ice, please.”

My friend cocked her head.  Her father had had a kidney transplant so she was well aware of the renal diet.  True, her father was treated in Korea, so there might have been some differences in treatment, but ice?

She asked me why and I immediately knew what I was going to blog about today.

For years, I’ve misunderstood something my nephrologist said.  I heard, “Don’t use ice.”  What he really said was something like, “If you use ice, you need to count the cubes in your fluid intake.”

I’ve spent time since Saturday researching the ice question and found nothing about avoiding ice.  I did find one warning about cold beverages from DaVita at http://www.davita.com/kidney-disease/overview/living-with-ckd/seven-summertime-precautions-for-people-with-kidney-disease/e/4894 : “Be careful of very cold beverages, which can cause stomach cramps.”

The lesson I learned from this misunderstanding of what I thought I heard is to recheck what you think you know every once in a while.  After all, I thought I had the diet down pat.

Hah!  I forgot that I was terrified when I was first diagnosed and thinking I was going to die imminently. I adhered strictly to what I heard and, apparently, adhered just as strictly to what I thought I’d heard.

sun-graphic1Wait a minute… maybe I need not have avoided the heat, either.  I researched that, too.  Just as with ice, I found a general warning about the elderly, but nothing specific to CKD.

““With the elderly, the heat accumulates in their bodies over hours to days. If you have a long heat spell, the elderly person accumulates heat through each of those days because they can’t really eliminate or dissipate the heat,” explains Dr. Crocker. “Sometimes it’s because of a medication, sometimes it’s a lack of mobility, or in some cases the older you get, the less active your sweat glands are, so it becomes harder and harder for you to eliminate heat.”

This is from The Austin Diagnostic Clinic at http://www.adclinic.com/2012/08/hot-summer-days-challenging-dangerous/#.U5X-ZKROUY0.

By the way, National Public Radio (NPR) has a fascinating blog about the term ‘elderly’ at http://www.npr.org/2013/03/12/174124992/an-age-old-problem-who-is-elderly.  While 65 was the accepted age for elderly here in the USA for quite some time, this is now under debate.  I, however, still envision an elderly person as frail and delicate… something I’m not.

But, again, there was nothing specific to CKDers in the quote above.  In thinking about it, I began to wonder if the risk of dehydration from the summer heat is the problem for us.

According to The National Kidney Fund at http://www.kidney.org/atoz/content/kidneysnottowork.cfm

“Kidneys can become damaged if they are not getting good blood flow. This can happen if you become dehydrated or seriously ill.”

Aha!  This was starting to make sense.  WebMD at http://www.webmd.com/fitness-exercise/tc/dehydration-topic-overview explains this for us.

“Usually your body can reabsorb fluid from your blood and other body tissues. But by the time you become severely dehydrated, you no longer have enough fluid in your body to get blood to your organs, and you may go into shock, which is a life-threatening condition.”ice water

Okay, so we know we need to drink fluids, especially in hot water. Our kidneys are already having a hard time cleaning our blood effectively and we are reabsorbing ineffectively cleaned blood prior to this point of dehydration.

But how do we know if we’re becoming dehydrated? What are the symptoms? I turned to my standby, the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/dehydration/basics/symptoms/CON-20030056 for the symptoms of mild dehydration:

  • Dry, sticky mouth
  • Sleepiness or tiredness — children are likely to be less active than usual
  • Thirst
  • Decreased urine output
  • No wet diapers for three hours for infants
  • Few or no tears when crying
  • Dry skin
  • Headache
  • Constipation
  • Dizziness or lightheadedness

And then I laughed.  I experience one or more of those symptoms at one time or another.  The clinic does make the extremely helpful point that the color of your urine is a good indicator of dehydration. If it’s clear or light in color, you’re fine.  If it’s dark, start drinking!  Interestingly enough, having CKD is already a risk factor for dehydration so let’s not make it worse for ourselves.

So how do we prevent dehydration?  What can we do if we can see if starting?

Obviously, drinking more fluids will help. I’m limited to 64 ounces in a day, but I get creative in summer. Sometimes, I will have that half cup of ice cream.  Watermelon magically (hah!) appears on the table.  Now that I realize I don’t have to avoid ice, they too will become part of both the anti-dehydration campaign and the anti-dehydration campaign in our house.watermelon

I’m not sure if this is common knowledge, but dehydration can also cause kidney stones.  If you don’t have the fluid in your body to prevent crystallization, crystallization is more apt to happen.  Kidney stones are,

“Stones caused in the urinary tract and kidney when crystals adhere to each other.  Most of those in the kidneys are made of calcium.”

(Love this author’s style).  That’s from What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, p. 133.

Talking about the book, it’s clear that digital outsells print and that in foreign markets, England outsells other countries.  I wonder if it’s the languages.  I’d thought about translations, but how would I be able to edit the texts if I don’t know the languages myself?  I’ve tried online translation, but the results are never quite what I originally wrote in English.

May you stay cool and hydrated.

Until next week,

Keep living your life!Book Cover

Your Thyroid and Chronic Kidney Disease Have Something Going On.

Today’s blog was written at the request of a reader.  The deal is I write a blog about hyperthyroid and its connection to Chronic Kidney Disease and she goes directly to her nephrologist to ask him the same questions she asked me.

While I’m a good researcher, I am not a doctor and that’s who should be asked your CKD questions.  Come to think of it, any time you receive any well-meant advice about this disease, check with your nephrologist first… even if you admire the brain of the person giving the advice.THYROID_72

Let’s do our usual go-back-to-basics-first.  The thyroid, according to WebMD at http://www.webmd.com/women/guide/understanding-thyroid-problems-basics , “… secretes several hormones, collectively called thyroid hormones. The main hormone is thyroxine, also called T4. Thyroid hormones act throughout the body, influencing metabolism, growth and development, and body temperature. During infancy and childhood, adequate thyroid hormone is crucial for brain development.”

There doesn’t seem to be anything alarming there, so let’s go to the T4.  I turned to What Is It And How Did I Get It? Early Stage Chronic Kidney Disease for information about this and found it on page 23 (Usual reminder: digital book owners, use a word search rather than a page).

“What this test is really for is to see if the T3 test comes back abnormal.  If it does, the lab needs to run another thyroid test.  That test, the T4, is a further thyroid test which looks for specific causes of the abnormality.”

Ah, so we need to be tested via a blood draw to see if there is an abnormality in our thyroid function.  Without getting technical, the abnormalities could be hypothyroid or hyperthyroid.  As a former English teacher, I know hypo is a prefix (group of letters added to the beginning of a word that changes its meaning) that means under, while hyper means over.

blood_test_vials_QAMy reader’s question was about hyperthyroid, but for the safe of completeness, I’ll include the symptoms of hypothyroid. These are the main symptoms – although there are many more – as found on http://thyroid.org.nz/Thyroid_Problems.php

  1. Cold hands and feet
  2. Chronic fatigue
  3. Lethargy and fatigue
  4. Emotional instability
  5. Depression

Hyperthyroid is not as common as hypothyroid and presents different symptoms:

  1. Sweating
  2. Anxiety and Excitability
  3. Thirst
  4. Racing heart
  5. Hunger
  6. Muscle weakness
  7. Shortness of breath
  8. High blood pressure
  9. Insomnia
  10. Weight loss

Numbers 7 & 8 caught my eye immediately since they seem to have something to do with CKD.

The diagnose I was specifically asked about is hyperthyroid, renal.  We already know renal means kidney, so this deals with how the overactive thyroid affects the kidneys.  Remember that hormones travel through the blood and that the thyroid produces a hormone.  Too much of that hormone produces the above symptoms.thyroid

As I understand it (and, again, I am not a doctor) – as mentioned –  the thyroid produces a hormone which is released into the blood, while the kidneys filter the blood.  If you have CKD, your kidneys are not functioning as well as they should.  If you have hyperthyroid, you are producing extra thyroid hormone that your compromised kidneys cannot purge from your blood as well as they should.

This quote from Wellness Resources at http://www.wellnessresources.com/health/articles/thyroid_and_kidney_problems_overlap/#ref1  encapsulates the interplay between the kidneys and the thyroid:

“A considerable body of science now links thyroid problems and kidney problems  in a “chicken and egg” manner.”

So yes, Cynthia, the CKD could have caused the hyperthyroid, renal, and vice versa.  However, hypothyroid does seem to be more common than hyperthyroid.

If there are topics you’d like me to research for you, Dear Readers (after Stephen King’s writing), please ask.  You can leave a comment here or inbox me on Facebook via the blog’s page.  I offer you the same deal.  I’ll research for you providing you ask your nephrologist the same question you’re asking me.

It’s clear to me that digital books are not the future of anything, but are what’s more desired right now.  Digital copies of What Is It And How Did I Get It? Early Chronic Kidney Disease consistently outsell the print copy.  That’s fine with me.  While you can pass around a print copy, you can also share the digital copy.  Just keep sharing the Chronic Kidney Disease information.

Another way to share is to send SlowItDown the list of communities in your area that could use CKD education.  It’s free. It’s taught by trained educators. And it’s brought to you.  Could your church use the education as a public service?  What about your local library?  Police station?  Senior citizen center?  Let’s get those phones ringing, folks.  602 509-4965. Don’t feel like talking to me?  Then email: ckded@cox.net.

I am absolutely thrilled that health treatment companies are starting to ask me what it’s like to be a CKD patient, even though I am an early stage patient.  Their interest means the medical profession is looking for new, possibly more effective, ways to slow down the progress of our incurable disease.The Table

On a personal note, we got out for a date day this past Friday.  I once considered a movie and dinner sort of humdrum as a date.  Now that we are still dealing with medical issues, it is wonderful!  Life is definitely a matter of how you look at yours… and mine gets better every day.

We also got out to a party for a bit this weekend.  I’m always amazed that the one person at a social function whose mother has CKD, or whose brother is a nephrologist, or whose roommate works in a doctor’s office, or who is worried about high blood pressure sits right next to me and starts talking.

On another front entirely, sometimes, as (slightly) older people with medical issues, we need help.  So we organized a text group message list.  It includes all our daughters out here in Arizona and two of their significant others.  A third significant other and the woman I consider my niece just asked to be added to the list.

I’d thought it was a burden, but these younger, (thankfully) healthy people WANT to help us out when we need it.  Maybe this would be a good idea for you.SlowItDown business card

Until next week,

Keep living your life!

From The Military To Potatoes

Memorial Day

Today is Memorial Day, a day to be especially grateful to those who lost their lives making sure the rest of us were safe.  I wondered if some of our fallen warriors had chronic kidney disease although the scientific history of our disease is so recent. I’ve spent the last several days researching CKD and the military in an attempt to answer my own question, yet haven’t quite succeeded.

All I know is that some of our present protectors have CKD.  This is how I discovered that:

The National Institutes of Health offered a particular Funding Opportunity Application [FOA] on December 1st, 2011, with the first submission being accepted on January 14, 2012.

“The goal of this FOA is to encourage Research Project Grant (R01) applications on prevention and treatment of obesity, diabetes, and chronic kidney disease in military personnel (active duty and retired) and their families. “

Notice “active duty” in that sentence. Both The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) participate in this study.  Unfortunately, my attempts to follow up on the study consistently brought me back to the FOA. You can read the FOA at http://grants.nih.gov/grants/guide/pa-files/pa-11-260.htmlNIH

The Department of Defense’s Instruction for Medical Standards for Appointment, Enlistment, or Induction in the Military Services “…Establishes medical standards, which, if not met, are grounds for rejection for military service. Other standards may be prescribed for a mobilization for a national emergency….”

As of September 13, 2011, according to Change 1 of this Instruction, the following was included:

“Current or history of acute (580) nephritis or chronic (582) chronic kidney disease of any type. “

Until this date, chronic kidney disease was not mentioned.  You can read this for yourself on page 27 of the document at http://www.dtic.mil/whs/directives/corres/pdf/613003p.pdf.  I cannot explain the seeming contradiction between the FOA and the Directive.

NimaAlthough, when my daughter Nima Rosensfit– researcher par excellence – asked me if I had a particular request for Mother’s Day, I asked her for research on the early history of CKD.  She found there wasn’t very much until fairly recently.  The fact that the first set of clinical practice guidelines (K/DOQI comprised Chronic Kidney Disease: Evaluation, Classification and Stratification) wasn’t published until February, 2002, may account for the lack of information from the military.These may be found at http://www.kidney.org/professionals/kdoqi/pdf/prot.pdf

While my information is inconclusive (at best), I sincerely hope that our warriors – whether on active duty or retired – have the same kind of care for their CKD as those of us who are civilians do.  Thank you again… and again…and again to our protectors, including my Bear. 2013-05-10 14.53.10-6

Yesterday, we were invited to several events.  One of these was a birthday brunch for my step-daughter, Lara Garwood.  Her sweetheart made certain there was food I could eat.  When my eyes lit up at the sight of baby potatoes (I’m Russian by heritage.), he commented, “I leached the potatoes, sort of.”

Book CoverLet’s go back to basics here for a moment. On page 134 (Do a word search instead of relying on the page number if you own a digital copy of the book.) of What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, I define potassium as,

“One of the electrolytes, important because it counteracts sodium’s effect on blood pressure.”

Dictionary.com tells us that electrolytes are:

“…any of certain inorganic compounds, mainly sodium, potassium, magnesium, calcium, chloride, and bicarbonate, that dissociate in biological fluids into ions capable of conducting electrical currents and constituting a major force in controlling fluid balance within the body.”

Potassium is necessary for the nerves and muscles. The heart is a muscle. But our compromised kidneys cannot eliminate enough potassium from the blood before it travels back to the heart. This may lead to heart attack… or kidney failure. It’s a chicken and the egg kind of thing.

These are the acceptable values of potassium in your blood. As you can see, there is a difference in the values for adults and children of various ages. Thank you everydayhealth.com at http://www.everydayhealth.com/health-center/potassium-k-in-blood-results.aspx for the chart.

Potassium (K)
Adults: 3.5-5.2 milliequivalents per liter (mEq/L) or 3.5-5.2millimoles per liter (mmol/L)
Children: 3.4-4.7 mEq/L or 3.4-4.7 mmol/L
Infants: 4.1-5.3 mEq/L or 4.1-5.3 mmol/L
Newborns: 3.7-5.9 mEq/L or 3.7-5.9 mmol/L

 

depression-cause-heart-attack-1I went to Kidneys.com at http://www.yourkidneys.com/kidney-education/Diet-and-nutrition/Potassium-and-early-stage-kidney-disease/3191 to see what, if any, the symptoms of high potassium levels are.

  • Nausea
  • Weakness
  • Numbness or tingling
  • Slow pulse
  • Irregular heartbeat
  • Heart failure

Now, keep in mind that at early stages of CKD you may not have high levels of potassium.  The idea is to keep your levels low so that you do not do damage to yourself since your kidneys are not doing such a great of eliminating it.

But here’s the kicker: raising potassium levels could lower your blood pressure. Remember high blood pressure is the second leading cause of CKD.  Just like riding a bicycle, it’s all a matter of balance.

Since being diagnosed, I’ve leached the potassium out of potatoes by cutting them into pieces, soaking them in water for four hours, changing the water, and letting them soak again or soaking them in the refrigerator overnight.  That’s a lot of time involvement, time I knew my almost son-in-law did not have in his schedule.potatoes

So I researched for a less time consuming method that I could mention to him.  I wanted to eat what he prepared, but only if it didn’t cause my CKD to progress. I was surprised to discover that the only effective way to leach potatoes and other vegetables is to double boil them.  Thank you to Kidneycoach.com at http://www.kidneycoach.com/356/potassium-leaching-study-shows-not-all-leaching-methods-work/  for this new, researched, effective method.

However, I find that new research disparaging. Sure, the potassium is out, but boiled potatoes?  And other vegetables since all contain some level of potassium?  How is that appetizing?  Then again, I like being alive, I like not being on dialysis, so I will just cope.

Talking about coping, electronic sales of the book are doing so nicely.  Feel free to share them with friends and tell others where you got them.  The name of the game is get the information about slowing down the gradual decline of your kidney function out to the public.  After all, that’s how SlowItDown was named.SlowItDown business card

Until next week,

Keep living your life!

A Foggy Day… in Your Brain

Coffee Beans_0I don’t know about you, but I thoroughly enjoy my 16 ounces of coffee a day.  I savor it and draw those two cups out as long as I can.  I relish the taste and adore the aroma.  And, I thought they would cut through what I’ve discovered is called ‘brain fog.’

To be honest, I’d never heard the term before.  Maybe I live too sheltered a life… or maybe I just didn’t realize it had anything to do with me.  After all, I don’t do drugs or drink.  I do get eight hours of sleep a night, follow the renal diet, and exercise just about every day.  So what does brain fog have to do with me or any other renal patient?

You probably know this blog is posted on as many Chronic Kidney Disease Facebook pages as I could find.  These are not for medical advice, but for sharing ideas and information – always with the warning that none of us are doctors.  That’s the same warning I mention in the blog.Book Cover

I receive daily notices of who posted what where.  I noticed a question about brain fog and was surprised at the responses.  The question asked who else suffered this cloudiness of thought and what stage they were in.

Once I understood what brain fog was, I imagined the responses would all mention end stage.  They didn’t.  I saw all stages from 2 through 5 mentioned.  I was grabbed by the fact that no one in stage 1 had responded and that’s when brain fog became the topic of today’s blog.

According to integrative medicine expert Dr. Isaac Eliaz, when experiencing brain fog:

“…people feel as if there is a thick fog dampening their mind. While the medical and mental health establishments don’t generally recognize brain fog as a condition, it’s a surprisingly common affliction that affects people of all ages. Symptoms include pervasive absentmindedness, muddled thought processes, poor memory recall, difficulty processing information, disorientation, fatigue, and others.”

You can read more at http://www.rodalenews.com/brain-fog.brain

Sound familiar?  Maybe that explains why you couldn’t find the tea bags in their usual spot even though they were there.  Or why you didn’t speak with the person you meant to about a certain subject (Yep, me and SlowItDown with a potential community), but just chatted instead.

While this is interesting, what does it have to do with renal disease?  I know there are readers who only want to read about subjects that affect us as sufferers of this disease.  I know because I get a good laugh when they ask what a particular blog has to do with renal disease.  It’s obvious they haven’t read the blog since the blog is ONLY about renal disease, but just commented instead.  But, more importantly, that’s why I write the blog.

So I did what I love to do: researched the topic. Here’s what I found:

www.naturopathconnect.com offered me my first insight into how our kidneys and brain fog are connected.

“Make sure your liver and kidneys are not overloaded or congested. When your liver and kidneys are not functioning well, they are less able to clear your system of the multitude of toxins that float around in your bloodstream. When your body is overloaded with toxins, your brain suffers as well….Dehydration may be a key factor in less-than-optimal kidney function, so water is essential to keep the kidneys in tip-top shape.”

Got it – toxins.  Uh, what toxins?  And how do they affect the brain, I wondered.  Back to researching.blood

Dr. Martin Morrell of healthtap.com offered an explanation. However, this is not an endorsement of him or the site.  I am not a fan of asking online doctors unfamiliar with your particular medical history for advice.

“… if your blood urea increases, which is supposed to be cleared by your kidneys, this ‘poison’ will affect the ability of the brain to work properly.”

Oh, blood urea. Well that explains it. But how can I explain blood urea?  I’ll allow the experts to do that.

http://www.patient.co.uk/health/routine-kidney-function-blood-test has the simplest explanation.

“Urea is a waste product formed from the breakdown of proteins. Urea is usually passed out in the urine. A high blood level of urea (‘uraemia’) indicates that the kidneys may not be working properly, or that you are dehydrated (have a low body water content).”

In the U.S., we call this test B.U.N. or Blood Urea Nitrogen Blood Test.  So as I understand it, if your protein intake is high, more urea is produced.  But since your kidneys are already compromised by CKD,  the toxins remaining in your body are not eliminated as well and are still in the blood that flows through your brain.  That’s logical.

blood_test_vials_QAThe more urea remaining in your system, the more sluggish your brain.  It does sound like a perfectly formed ‘if-then’ equation from probability theory. The only difference here is that this is not a theory, but, rather, what we may encounter as CKD patients.

What to do?  What to do?  Obviously, keeping our protein intake low will help.  My renal diet limits me to five ounces of protein a day. I rarely ingest more protein than that. Well, bully for me!  So how else can I alleviate my sometimes brain fog?

I was all over the web on this one and found that besides what I was already doing for my CKD, I could also avoid heavy metal (and I always thought that was a kind of music) exposure, use a blue light, get myself some natural sun light, check my medication side effects and lots more.  This is the stuff of several blogs.

It’s real.  Brain fog could be affecting you, especially if you have CKD.  And from what I’ve read, once you’ve gotten your CKD slowed down as much as possible, the other ‘fixes’ are easy.

Okay, so coffee’s not going to help here but I’ll drink it anyway.SlowItDown business card

I just got the report from my publishers.  Thanks to all of you who brought the book as Christmas, Chanukah, or Kwanzaa presents.  That was a good month for sales which allows me to donate even more books.

SlowItDown is slowly progressing. Interesting choice of words there. We have new educators in New York and Washington, D.C. and – frankly – need your help in finding the communities that need us.

Sweet 16Between birthday parties (Happy Sweet 16, Olivia Vlasity!) and graduations (Congratulates on that and acceptance to U. of A. College of Medicine, Jordan Mudery), and the chance to spend time doing nothing graduationwith Bear, this was almost the perfect weekend for me.  Here’s to many of those for you!

Until next week,

Keep living your life!

The Nos(e) Have It.

My father had a deviated septum.  My daughter has a deviated septum.  Why don’t I have a deviated septum?  Oh right, I’m the lucky one.  I only have Chronic Kidney Disease… not that the two are mutually exclusive… or that it’s lucky to have CKD.deviatedseptum

When it was my father’s turn, I was too young to know anything except that my dad was gone over night. I didn’t like that. Now I ask my daughter loads of questions. I don’t like that either.

So here I am very ahead of myself and not giving you a clue as to what a deviated septum is.  Septum comes from the Latin saeptum, which means “a fence, enclosure, partition.” (Thank you my old academia friend Etymology Online at http://www.etymologyonline.com/index.php?term=septum.) We still use that word for the dividing membrane in the nose.

Feel the rigid cartilage under the skin on the outside of your nose.  Inside are two chambers separated by the – what else? – septum.  Deviated means exactly what you think it does: turned aside.  Sometimes you can see the results of a deviated or turned aside septum by looking at a person’s nostrils.  If one is large and the other very small, it’s likely they have a deviated septum.nostrils

Sometimes people are born with them, but 80% of the time, they’re caused by accidents of one kind or another, or even growing older.  Sometimes people don’t even know they have a deviated septum.  Sometimes it doesn’t even matter.

sinusesBut when you start to experience frequent sinusitis and nosebleeds, it does start to matter. According to The Mayo Clinic at: http://www.mayoclinic.org/diseases-conditions/deviated- septum/basics/definition /con-20031537

“When a deviated septum is severe, it can block one side of your nose and reduce airflow, causing difficulty breathing. The additional exposure of a deviated septum to the drying effect of airflow through the nose may sometimes contribute to crusting or bleeding in certain individuals.”

Some of the symptoms are: preferring to sleep on one side since that allows the larger nostril to get the most air, noisy breathing, the above mentioned nosebleeds and frequent bouts of sinusitis.  Wait, sinusitis?  According to Canada.com at http://bodyandhealth.canada.com/channel_section_details.asp?text_id=5694&channel_id=1020&relation_id=70842

“The narrowed nasal passageway caused by a deviated septum can cause mucus to become blocked by preventing the drainage of mucus from a sinus into the nasal cavity. Excess mucus inside the sinuses presents an attractive environment for bacteria, leading to a sinus infection. This in turn causes inflammation of the sinuses (sinusitis), and because it can happen regularly, chronic sinusitis can occur.”

sinus infectionOh, my poor daughter! Frequent nosebleeds, chronic sinusitis, their accompanying post-nasal drip, and headaches.  Oh yes, headaches. As I understand it, fluid (can’t drain properly due to that deviated septum, remember?) builds up in the sinuses and exerts pressure.  Result: headache.

This sounds pretty bad, but there are ways of dealing with a deviated septum.Keep in mind that some people have a mildly deviated septum so they don’t do anything for it. Others are troubled by the deviated septum and use medications such as decongestants, nasal sprays, or antihistamines. But when the symptoms are affecting your life and health, surgery is usually suggested. The following is from MedicineNet at http://www.medicinenet.com/deviated_septum/page2.htm

“If a person has a deviated septum and it causes breathing problems or sleep apnea and snoring, surgery may be recommended to repair the septum. Surgery to fix a deviated septum is called a septoplasty, submucous resection of the septum, or septal reconstruction.”

Did you notice that this surgery is sometimes necessary so that the sleep apnea  – which may be caused by your deviated septum – can be cured?  That’s how it affects us as CKD patients. We already have enough problems without sleep apnea!  Diabetes, cardiovascular illness, mortality may all be connected to a deviated septum as we know from a recent blog that quoted EurekAlert at http://www.eurekalert.org/pub_releases/2014-04/elf-sal040214.php.septo

“Sleep apnoea has been linked with elevated blood sugar levels, suggesting people with the condition could be at an increased risk of cardiovascular illness and mortality.

The findings of a new study, published online today (3 April 2014) in the European Respiratory Journal, add to a growing body of evidence that suggests that sleep apnoea is linked with diabetes.”

sad faceYour medical condition is simply not as, well, simple as you think with CKD. Deviated septum may lead to sleep apnea, which may lead to diabetes, or any of the other outcomes listed above.

Okay, we’re ready to take a look at the surgery now. I found this at http://deviated-septum.net/deviated-septum-symptoms-diagnosis-and-treatment/ via a simple Yahoo search.

“Septoplasty is the surgical treatment which is preferred by doctors worldwide to correct a deviated septum. The surgery is done entirely through the nostrils, thus no external bruising occurs. During the surgery the portion of the septum which are [sic] extremely deviated will be re-adjusted or realigned or removed completely.”

Sometimes people do have a nose job (rhinoplasty) at the same time.  This completely changes the shape of the nose.  But let’s not judge here; maybe the adjustments made to the deviated septum would make the appearance of the finished product unacceptable to the patient.

I wish my daughter and everyone else who needs this procedure well.  She’s got a pretty nose.  I like the idea that she should be able to adequately breathe through it after her surgery… and may be cured of her headaches, sinusitis, nosebleeds, and sleep apnea.SlowItDown business card

News: the Medicare monthly magazine has profiled me for an upcoming issue.  I have no idea when it’ll be out, but I’ll tell you as soon as I know.

I’m wondering why, if my advocacy for Chronic Kidney Disease Awareness is so important that I’m being profiled by newspapers, interviewed on radio shows, and have so many readers for the blog, SlowItDown isn’t getting more calls to bring free ckd education by trained educators into the community.  Suggestions for speeding up SlowItDown (love that juxtaposition), anyone?Book Cover

Thank you all for keeping the book moving out of the stores and into your loved ones’ lives.  After reading about the deviated septum, I donated a copy to the pulmonologist I saw for my own sleep apnea today.

Until next week,

Keep living your life!

Higher and Higher

Today we start off with an announcement:  What Is It And How Did I Get It? Early Stage Chronic Kidney Disease’s profits have offset the cost of 2011’s donations of itself! That is not bragging about earnings, but rather an indication of just how many books were donated that year.Book Cover

And just why is that important to anyone but Gail, you ask.  Remembering my passion is to get the information about CKD out to the public, you’ll be able to see the connection after reading this:

“That guideline {e.g. providing a common language for communication among providers, patients and their families, investigators, and policy-makers and a framework for developing a public health approach to affect care and improve outcomes of CKD} led to a paradigm change in the approach to CKD, shifting from an uncommon disease often culminating in kidney failure and treatment by nephrologists to a common condition leading to death from cardiovascular disease. As a result, CKD is now accepted as a worldwide public health problem and the global guideline was developed to address this issue.”

This quote is from Andrew S. Levey, MD, co-chair of the NKF KDOQI workgroup that developed the 2002 CKD Guideline and Dr. Gerald J. and Dorothy R. Professor of Medicine at Tufts Medical Center in Boston.

NKF-logo_Hori_OBYou can probably figure out that NKF is the National Kidney Foundation, but you might need a little help with KDOQI.  That’s the acronym for their Kidney Disease Outcomes Quality Initiative.

2002 was a long time ago, but this statement was issued on December 27th, 2012, which was the night before the release of Kidney Disease: Improving Global Outcomes (KDIGO).

By the way, many thanks to the National Kidney Foundation for each time they’ve asked me to write for them, suggested my name for articles about kidney disease awareness advocates, or offered me suggestions.

I’ve freely quoted from their page: http://www.kidney.org/news/newsroom/nr/Updated-CKD-Guideline-Enable-Physicians-Predict-More-Accurately.cfm, and yet, there’s even more information there.  Take a look for yourself.

So, CKD is now a common disease. And many people suffering from it die of cardiovascular disease. And hypertension can lead to that… and CKD.  Seems pretty circular.

Back to basics.  Hypertension or high blood pressure is defined on page 132 of What Is It And How Did I Get It? Early Stage Chronic Kidney Disease:

“A possible cause of CKD, 140/90 mm Hg is currently considered hypertension, a risk factor for heart disease and stroke, too.”

blood pressure 300dpi jpg

Now, about that 140/90…. According to the National Institutes of Health‘s National Heart, Lung, and Blood Institute at http://www.nhlbi.nih.gov/health/health-topics/topics/hbp/printall-index.html, as of January, 2014,

“If you have diabetes or chronic kidney disease, a blood pressure of 130/80 mmHg or higher is considered HBP.”

Not only that, but blood pressure can change depending upon the arm that is being used to measure it, the time of day, whether you’ve just smoked (Just don’t!), had a cup of coffee or eaten just prior to the test, even if you’ve just woken up.  We all know what worry or stress can do to your blood pressure.  It seems even your race can make a difference.

_68045928_picture1A little less than a year ago, a team at London University College developed a wrist sensor to measure blood pressure as the blood leaves the heart itself. They discovered that blood pressure does not drop as much as thought during the night and that it might be possible to predict heart disease by using this monitoring.

I was particularly interested since I have a wrist monitor that my PCP (primary care physician) prefers I not use, thinking the measurement of the blood passing through the arm arteries more accurate.  I’d originally thought this was a wrist monitor but it doesn’t measure the blood flowing through the wrist.  This was a surprise to me and one I’d like to follow closely.  If you’d like to, also, take a look at http://www.bbc.com/news/health-22812477

The Centers for Disease Control and Prevention provides a chart that makes clear why Blacks (or African Americans as they are referred to in the chart) are at 3.5 times the risk of CKD.  Look at the numbers, ladies and gents.  Hbp {high blood pressure} is the second leading cause of CKD. As usual, there’s so much more information about high blood pressure on their page: http://www.cdc.gov/bloodpressure/facts.htm.

Race of Ethnic Group Men (%) Women (%)
African Americans 43.0 45.7
Mexican Americans 27.8 28.9
Whites 33.9 31.3
All 34.1 32.7

 

 
 
   
   

It’s common knowledge that exercise can lower blood pressure, but how many readers know that it can also make your blood pressure medication more effective? On 4/23 of last year, The American Heart Association issued this statement:

“Alternative therapies such as aerobic exercise, resistance or strength training and isometric hand grip exercises could help people reduce blood pressure. Biofeedback and device-guided slow breathing reduced blood pressure a small amount. Due to their modest effects, alternative therapies can be used with — not as a replacement for — standard treatment.”

Rae%208x10%205792%20Sepia%20TinType[1]Oh, so that’s why I didn’t give away the isometric hand grips when we gave up 1880s competitive shooting.  Good for the trigger finger, just as good for the blood vessels – with proper medication.

Wait a minute.  Both the United Kingdom and the United States have populations with almost a third of the people suffering high blood pressure. Think about this.  What could this mean?

I don’t know if it’s because I’m getting older or not, but life seems to be moving so fast these days.  First there was Passover, then Easter, now Mother’s Day coming up with Father’s Day soon to follow and all those lovely birthdays and anniversaries in between.  How much stress is this?  How much stress is getting ready for your vacation?

No, I’m not saying these occasions should be ignored to lower our blood pressure.  I am saying we are the ones in control of how we treat these occasions.  Are they going to be occasions of stress?  Or gatherings with joint efforts and a relaxed delight in seeing the people involved? {And now you know why our wedding invitation – which I wrote – refers to me as “the Former Wannabe Hippie.”}

Happy Mother’s Day to all those who are mothers, wish they were, have mothers, or ever even remotely considered motherhood – male moms included.Mother's Day 2012  And what better gift for the mom in a family that has a CKD sufferer than…

Until next week,

Keep living your life!

How Sweet It Is… Not

bluesYesterday was one of those low energy days for me, but I really wanted to go to Sustainable Blues.  So I did.  I need the socializing and that soulful blues music at least once a week. I lasted for the lesson and one dance past.

But then I got stupid.  You know those cravings for sweets when you’re tired?  CKDers get them, too.  Once in a very great while, this CKDer gives in to those cravings.  (I’m still human, you know.)

And then I pay for it.  My stomach hurts and I need to stay close to what is euphemistically called a restroom in Arizona.

That got me to thinking: what was I doing to my kidneys by giving in to these cravings, even if it were once in a great while?  So I researched it, but first I gathered all the information I already had at my fingertips.

My starting place? What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, of course.  It’s not just a reference for readers, but for me too.sweets

Bingo! On page 32 (Digital readers, the page numbers will not be helpful to you.  Search for the terms, instead), I found an explanation of the A1C:

“This measures how well your blood sugar has been regulated for the two or three months before the test.  That’s possible because the glucose adheres to the red blood cells.”

So what is glucose and why am I including it in a discussion of sugar and the kidneys, you ask?  Turn to page 132 which is part of the glossary.  Here, glucose is defined as:

“The main sugar found in the blood.  In diabetes, the body doesn’t adequately control natural and ingested sugar.”

Aha!  So glucose IS a sugar and it has something to do with diabetes.

Diabetes?  Back to the A1C. You’ve heard me be concerned about my A1C for years.  That’s because below 5.7 is a normal reading.  Above 6.5 is diabetes.  Anything in-between is pre-diabetes.  Guess what my results have been since I’ve been tested for this. Oh, pre-diabetes, you follow me around like a puppy.

Location of KidneysSo why should I be so concerned?  What was happening to my kidneys?

I do remember reading that too much sugar can damage the linings of your blood vessels. This is something you want to avoid when you’re already having problems with your kidneys.  The blood vessels carry your blood throughout your body, even if your impaired kidneys have not properly cleaned the blood.

The National Institutes of Health are really good about keeping information reader friendly and allowing the reproduction of their material.  This simple explanation of what diabetes can do to your kidneys clarified the issue for me and, hopefully, will do the same for you:

“High blood glucose and high blood pressure damage the kidneys’ filters. When the kidneys are damaged, proteins leak out of the kidneys into the urine. The urinary albumin test detects this loss of protein in the urine. Damaged kidneys do not do a good job of filtering out wastes and extra fluid. Wastes and fluid build up in your blood instead of leaving the body in urine.

Healthy%20KidneyUnhealthy%20KidneyNo albumin, a protein, is leaking from the healthy kidney in the top drawing.

Albumin, a protein, is leaking from the unhealthy kidney in the bottom drawing.

You can find even more information at: http://diabetes.niddk.nih.gov/dm/pubs/complications_kidneys/#hurt

In case you’ve forgotten what albumin is, see page 129 in the glossary of What Is It And How Did I Get It? Early Stage Chronic Kidney Disease:

“Albumin: Water soluble protein in the blood.”

This blog is turning into an ode to the book rather than a discussion of the effects of too much sugar on the kidneys of a CKDer! I’ll stop that right now, folks.Book Cover

While too much blood glucose can cause the diabetes which may cause Chronic Kidney Disease, the reverse is true, too.  CKD can have an effect on your diabetes.  If the kidneys are already compromised as far as the part of their job that deals with filtering the blood and now your blood vessel linings are damaged, your body is simply not functioning as it was meant to.

What else can too much sugar do to your body?  According to The Salt at NPR (http://www.npr.org/blogs/thesalt/2013/10/25/240784956/aging-well-keeping-blood-sugar-low-may-protect-memory) it may be affecting your memory more as you age. Agnes Floel of Charite University Medicine in Berlin, the author of a study published in the New England Journal of Medicine last year says,

“It’s possible that blood vessel effects can damage memory. Elevated blood sugar levels damage small and large vessels in the brain, leading to decreased blood and nutrient flow to brain cells….”

And then there’s sleep apnea. According to a recent EurekAlert at http://www.eurekalert.org/pub_releases/2014-04/elf-sal040214.php,

brain“Sleep apnoea has been linked with elevated blood sugar levels, suggesting people with the condition could be at an increased risk of cardiovascular illness and mortality.

The findings of a new study, published online today (3 April 2014) in the European Respiratory Journal, add to a growing body of evidence that suggests that sleep apnoea is linked with diabetes.”

And heart disease!  Let’s not forget heart disease! According to MedpageToday at http://www.medpagetoday.com/Cardiology/Prevention/44114?xid=nl_mpt_DHE_2014-02-04&utm_content=&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=WC&eun=g596983d0r&userid=596983&email=myckdexperience@gmail.com&mu_id=5721543,

“People who had excessive amounts of added sugar in their diet carried greater risks of dying from cardiovascular disease (CVD), researchers found.”

The researchers in this case are Quanhe Yang, PhD, of the CDC’s Division for Heart Disease and Stroke Prevention in Atlanta, and her colleagues.

This one’s for women in my age group:

“The most common type of endometrial cancer occurred almost 80% more often in postmenopausal women who regularly consumed sugar-sweetened drinks as compared with women who consumed none, a study found.”

This is another Medpage article that you can find at: http://www.medpagetoday.com/HematologyOncology/OtherCancers/43086?xid=nl_mpt_DHE_2013-11-23&utm_content=&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=WC&eun=g596983d0r&userid=596983&email=myckdexperience@gmail.com&mu_id=5721543.

I think I just may have frightened myself enough not to succumb to those sweet cravings.  But wait!  Carbohydrates also play a part in diabetes. Oh, but that’s a blog for another day.

New information: Not only is SlowItDown in Washington, D.C. (Georgetown and K St. NW), but also in southern Maryland… Lanham, Beltsville, Clinton, White Plains.  You know classes can be scheduled in other areas, too.  Call us!  We’re starting to feel like the Maytag repairman!!!!SlowItDown business card

Until next week,

Keep living your life.

Another Holiday

Holidays abound! Or maybe it just feels that way. No sooner did my Russian Jewish almost son-in-law and I co-host our Seder then it was time to get ourselves together for Easter. Sometimes it’s a lot of work to have such an integrated family.

passover This time, no one stepped up to bat and I soon found out why. Another almost son-in-law had minor surgery, but was still in pain and not ready for people. A third adult child had weekend guests and had to work Sunday evening. But one couple wanted an Easter celebration.

So I quickly figured out that I could go to the weekly Sustainable Blues dance lesson that my youngest, Abby Wegerski, taught every week AND make dinner for these adult children if I planned carefully. That’s when I realized I wasn’t weighing and measuring or looking at my renal diet Bible before cooking. All the ingredients I needed were renal friendly and readily available in our house.blues

What a relief! It took almost seven years for this information and this way of being to become part of me. The point here is that the renal diet has become a way of life, one I don’t often think about too much anymore. I can easily remember a time I needed to pull out the diet list to see what I could eat, then another list to see if the protein, potassium, phosphorous, or sodium (3 Ps and and S, as I call them in What Is It And How Did I Get It? Early Stage Chronic Kidney Disease) levels were too high and finally the KidneyDiet app to make sure I hadn’t gone over my limits for each of these and a calorie count.

This wonderful revelation doesn’t mean that I don’t hit my own ‘refresh’ button periodically to make sure I really am correctly eye judging the amounts of each food I use in cooking and eating or that I don’t need to occasionally check to see if I’m right about the amount of whatever is in it.

I still carry all three of these – Northern Arizona Council on Renal Nutrition Diet, AAKP Nutrition Counter, and KidneyDiet app – as my talismen. There’s a certain security in knowing I have them if I need them. I also find that sometimes I just don’t remember exactly what I read in each, so it’s a comfort to have them at hand.Book Cover In Chapter 8: The Renal Diet of What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, I offer an example of the intricate and annoyingly painstaking little notebook I devised to keep track of my CKD nutrition. Ladies and Gentlemen: I am pleased (for CKD sufferers) to announce this is now obsolete!!!

One of the very first apps I purchased was KidneyDiet. It is not the same as my little notebook, but works equally well. The only thing it doesn’t do is tell you if you’ve reached your daily limit in each category of food (milk, meat or meat substitutes, grains, fruits, vegetables, and fats).

android_welcomeYou’re an intelligent person. You can figure out just by looking at a display of your entries if you’ve had your one four ounce serving of milk, five ounces of meat or meat substitutes, however many servings of grain (depends upon your sex, weight, and whether or not you want to lose weight), your three servings each of fruits and vegetables and your fill of fat intake. You’re the one entering your limits (as prescribed by your dietician), and they show up red if you’ve gone over them. Calories and cholesterol are also included, as is fluid intake. The nicest part is that if there’s a food you like which isn’t on the pre-existing list that comes with the app, you can add it. Do that once and you have the information for that food every time you enter it.

No, I do not own stock in the KidneyDiet app, although that might not be such a bad idea. I am thrilled that life keeps getting easier for us as CKD patients. I know I’ve written about the app before, but each time I use it, I’m grateful for how it’s made my life easier.

Wait a minute! I just realized the next holiday on the calendar is Mother’s Day. This should be interesting because I’m not cooking for that. If Bear does, no problem. He knows my dietary restrictions almost as well as I do. But if it’s one of the kids, especially one of the newer additions to the family…. Maybe it’s time to be more stringent when they ask me what I can eat, or better yet, tell them in advance.

When we went to Florida and stayed with my brother, Paul, and sister-in-law, Judy Peck (she of the magnificent cooking), Judy asked me what I could eat. So I sent her the renal diet I follow. It was overwhelming to her, just as it is to new CKD patients. As usual, she successfully simplified the matter. By asking me what I could eat instead of adhering to the list, she saved herself from having to pick and choose from a double sided page of dietary restrictions and I (of course) only told her the foods Bear and I liked. The moral of the story: everyone was happy once this was briefly discussed. photo (2)

The theme of today’s blog is that life is becoming easier for CKD patients but we’ve got to keep talking, keep exchanging ideas, keep each other updated about new information. CKD is part of me now, but it sure isn’t all of me.

About keeping each other informed: The Free Health Screening by Path to Wellness is on Saturday, 4/26 from 8:30 to 1:30 at The Golden Gate Community Center 1625 N. 30th Ave. in Phoenix, Az. While it is free you need to call for an appointment – the number if you speak English is 602 840 1644. For Spanish speakers, the number is 602 845 7905. You must be over 18 and have a family member with diabetes, heart or kidney disease, or have diabetes or high blood pressure yourself.

Have you looked at Dr. Mario Trucillo’s American Recall Center (www. recallcenter.com)? That was the site discussed in last week’s blog. I’d be interested to hear what you think of it.

I challenged myself to create a business card for SlowItDown doing all the formatting and graphics myself.  This is the final product:SlowItDown business card

Feedback?

 

Until next week,

Keep living your life!

It’s the Salt of the Earth

passoverPassover begins tonight at sundown. A Guten Pesach for all those who celebrate.  We’re hosting the first seder here tonight.  Only  three of our eleven guests are Jewish, although there is a hint of Jewish blood in a few others.  All are welcome… including Elijah.

Yesterday, I attended a Palm Sunday Brunch hosted by an acting colleague. Unfortunately for me, none of the food she carefully made from scratch was on the renal diet (I can’t eat many of the traditional Passover foods either), so I did my taste-each-food-to-be-polite thing. I had such minimal amounts of each that I wasn’t doing damage to my kidneys, but I also discovered new tastes.

I realized none of this food tasted salty to me, as food not on the renal diet usually does. When asked, she told me she doesn’t use salt but spices instead. This stuff was delicious! If I weren’t on the renal diet, I would have asked her for the recipes for each dish she’d made.

Nancy’s not using salt in her cooking got me to thinking if we needed salt at all. Actually, I knew we did, but I didn’t know why. I poked around and found the following on an NPR blog:

“If you don’t keep up your sodium level in your body, you will die,” explains Paul Breslin, a researcher at the Monell Center, a research institute in downtown Philadelphia devoted to the senses of taste and smell. (Breslin also teaches at Rutgers University.) “

That’s extraordinarily blunt, but there’s quite a bit more about this at http://www.npr.org/blogs/thesalt/2012/12/20/167619010/the-paradox-and-mystery-of-our-taste-for-salt. What I got from this is the same question I usually have: why?Whatever Happened to Common Sense?

I remembered that salt regulates your hydration but decided to check this anyway. According to The Royal Academy of Chemistry at http://www.rsc.org/get-involved/hot-topics/Salt/do-we-need-salt.asp,

It is the sodium (ions) present in salt that the body requires in order to perform a variety of essential functions. Salt helps maintain the fluid in our blood cells and is used to transmit information in our nerves and muscles. It is also used in the uptake of certain nutrients from our small intestines. The body cannot make salt and so we are reliant on food to ensure that we get the required intake.

An EurekAlert at http://www.eurekalert.org/pub_releases/2013-08/mu-anr082013.php made me realize another important function of sodium, the element our bodies cannot produce:

Researchers at McGill University have found that sodium – the main chemical component in table salt – is a unique “on/off” switch for a major neurotransmitter  receptor in the brain. This receptor, known as the kainate receptor, is fundamental for normal brain function and is implicated in numerous diseases, such as epilepsy neuropathic pain.

Normal brain function!brain

Just in case you didn’t take chemistry in high school or college – which I admit was too intimidating for me – salt is 40% sodium and 60% chloride. It’s the 40% sodium that causes a problem if you have too much of it. This is a quandary. You need salt to live and function well, but too much can kill you via raising your blood pressure.

There is an ongoing controversy of how much salt we need on a daily basis. This is what is on Colorado State’s website at http://www.ext.colostate.edu/pubs/foodnut/09354.html:

The Dietary Guidelines for Americans recommended reducing sodium intake to no more than 2,300 milligrams per day. However, those with hypertension, over the age of 51, or who are African American, should consume no more than 1,500 milligrams of sodium per day. This recommendation includes over half of all Americans.

But have they taken into account the fact that we sweat during the summer or when we work out and lose a great deal of sodium that way? Does that mean we need more sodium during these times? And how do you judge how much sodium is too much anyway? Or do we use the Goldilocks Theory of ‘just right’ here.

All right, then. The next logical question would be how much is usually too much. Hello Medical News Today at http://www.medicalnewstoday.com/articles/146677.php. That’s where I found this handy, dandy, how much chart.

food labelHow to read food labels and identify high and low salt foods

You should check the labels of foods to find out which ones are high and low in salt

content. If the label has more than 1.5g of salt (or 0.6g of sodium) per 100g it is a

high salt content food.

If it has 0.3g of salt (0.1g of sodium) per 100g then it is a low salt content food. Anything in

between is a medium salt content food.

  • High salt content food = 1.5g of salt (or 0.6g of sodium) per 100g
  • Medium salt content food = between the High and Low figures
  • Low salt content food = 0.3g of salt (0.1g of sodium) per 100g

The amount you eat of a particular food decides how much salt you will get from it.

As renal patients, we need to pay special attention to the amount of sodium we ingest. I’m on the Northern Arizona Council of Renal Dietitians’ diet which permits 2,000 mg. of sodium a day. That’s really limited since a teaspoon of salt has about 2,300 mg. of sodium. Of course, now that I’m over 51 (okay, way over), I’m down to 1,500 mg. of sodium daily.

How do I keep within my guidelines, you ask? It’s become easy, but don’t forget I’ve had seven years to perfect it. We do have filled salt shakers available in the kitchen, but they’re invisible to me. I use spices in cooking instead. My best friend there is Mrs. Dash’s, although there are many other spices on the renal diet. I just like her (its?) blends. I check labels copiously when I do the marketing and Bear does too. If there’s hidden sodium in foods, there’s not much I can do about it. However, checking labels and ignoring the salt shaker will help keep my kidneys safe from too much sodium. (Pssst: I also ignore whatever food you can buy at gas stations.)salt shakers

As DaVita tells us (http://www.davita.com/kidney-disease/diet-and-nutrition/diet-basics/sodium-and-chronic-kidney-disease/e/5310)

Particularly damaging is sodium’s link to high blood pressure. High blood pressure can cause more damage to unhealthy kidneys. This damage further reduces kidney function, resulting in even more fluid and waste build up in the body.

Other sodium-related complications include the following:

  1. Edema: noticeable swelling in your legs, hands and face
  2. Heart failure: excess fluid in the bloodstream can overwork your heart making it enlarged and weak
  3. Shortness of breath: fluid can build up in the lungs, making it difficult to breatheUntil next week,

So lay off the salt, my friends.

recall centerBefore I leave you this week, I wanted to let you know that Dr. Mario Trucillo contacted me about his new company.  He is a Ph.D. with the American Recall Center (www. recallcenter.com) “a brand new medical information site aimed at bringing consumers the most up-to-date FDA information in easy to understand, plain language terms,” according to his e-mail.  I have been looking at the site and am pleased to announce I understood everything I read there… not often the case for me.  Why not take a look for yourself?  There are not that many plain language medical websites available. The more I look at this one, the more I like it.

Until next week,

Keep living your life!

Happy Anniversary… Sort Of

4weddingYesterday was our first anniversary. Given my Chronic Kidney Disease complicated bouts of bronchitis and Bear’s surgery, it’s been a medically challenging year for us.  We were glad to start Year Two as a married couple, but not before we celebrated the end of the first year by eating the piece of wedding cake our well-meaning friends had insisted be placed in an airtight plastic bag and frozen for a year.

Of course, that meant to me that we should have the special ground coffee I had ordered for the wedding with the cake, so I saved some of that, too. My daughter, Nima, had been a Starbuck’s barista for a time and carefully explained to me that you don’t freeze or refrigerate coffee.  So I just folded over the top of the bag and clipped it shut.

Those of you clutching your stomachs as you run for the restroom (weird word that) know exactly what happened.  This is ridiculous, I thought.  That’s a long standing tradition.  How could anything so romantic make anyone sick?  Hah!

And that led me to wondering how and when this tradition started. The answer I found left me laughing.  You will too when you remember we had each passed 65 when we married. According to http://www.hudsonvalleyweddings.com/guide/cakehistory.htm, “The tradition has its roots in the late 19th century when grand cakes were baked for christenings. It was assumed that the christening would occur soon after the wedding ceremony, so the two ceremonies were often linked, as were the cakes.”

Hang on and you’ll eventually see what the wedding cake tradition and the coffee have to do with CKD.

Back to the cake:  I scouted around and found this freezing guide at http://www.home-storage-solutions-101.com/freezer-storage-times.html:download (6)

Bread & Desserts TIme
Baked bread and cookies 3 months
Cakes, pastries and doughnuts 3 months
Muffins and quick breads 3 months
Pancakes and waffles 3 months
Cooke or bread dough 1 month
Produce TIme
Fruits 1 year
Juices 1 year
Vegetables 8 months
Nuts 3 months
Dairy & Eggs TIme
Ice cream 2 months
Butter 9 months
Cheese 3 months
Eggs (raw, not in shells) 1 year
Milk 1 month
Meats TIme
Ground beef, pork & stew meats 4 months
Other beef (i.e., roasts, steaks) 1 year
Lamb and veal 9 months
Ham 2 months
Pork chops 4 months
Pork roast or loin 8 months
Bacon and sausage 1 month
Poultry TIme
Chicken and turkey (whole) 1 year
Chicken and turkey (cuts) 6 months
Ground turkey and chicken 4 months
Seafood TIme
Fatty fish (i.e., mackerel, trout) 3 months
Lean fish (i.e., cod, flounder) 6 months
Crab 10 months
Lobster 1 year
Shrimp and scallops (unbreaded) 1 year
Miscellaneous TIme
Casseroles (cooked) 3 months
Paste and rice (cooked) 3 months
Soups and stews 2 months

 

This is not the gospel of freezing food, but I wanted to give you a general guideline.  Did you notice that “3 months” for cakes?  I think I’m beginning to understand the stomach ailment now. (She groaned.)

That, of course, made me wonder how long ground coffee could keep if it wasn’t frozen or refrigerated, which would have made it take on the taste of its neighbors and help destroy its own wonderful flavor. I went to http://www.eatbydate.com/drinks/coffee-tea-shelf-life/coffee-shelf-life-expiration-date/ for this chart.

 

(Unopened/Sealed) Pantry Freezer
Past Printed Date Past Printed Date
Ground Coffee lasts for 3-5 Months 1-2 Years
Whole Bean Coffee lasts for 6-9 Months 2-3 Years
Instant Coffee lasts for 2-20 Years Indefinite
(Opened) Pantry Freezer
Once Opened Once Opened
Ground Coffee lasts for 3-5 Months 3-5 Months
Coffee Beans last for 6 Months 2 Years
Instant Coffee (freeze dried) lasts for 2-20 Years Indefinite

cup-of-coffee-2

 

 

Ugh! A year is substantially more than the 3 to 5 months suggested.  Okay, so now you have the back story.

Book CoverThanks for being patient. Here’s where the CKD comes in. Your kidneys filter toxins and waste products from your blood.  They also regulate electrolyte levels and blood pressure and produce hormones, among their many jobs.  If they’re busy taking care of food poisoning (or whatever you call eating improperly or overly frozen or stored food), they have less time – or is it energy? – to pay attention to their typical jobs.  There’s even a theory that food poisoning can further compromise our already compromised immune systems.  There’s more information at http://www.medic8.com/healthguide/food-poisoning/kidney-failure.html

So much more than this has happened since last week.  On March 25th (okay, so that was over a week ago), we presented at The Salt River Pima Maricopa Indian Community Family Health Fair. That’s where these pictures were taken.  I’m seriously considering using the SlowItDown picture as a business card and welcome your opinion about that.SlowItDown business cardhealth fair.Salt River Great Seal

We were also able to attend my father’s family’s reunion and, more importantly, spend time with my brother, Paul, and sister-in-law, Judy Peck, in Florida which meant I was able to share both the book and SlowItDown with a Boca Raton hospital, a Brandon nephrology practice, and AAKP of Florida.  Public thanks to all of you for your kind reception.

Twitter people have been retweeting and favoriting both SlowItDown and What Is It And How Did I Get It? Early Stage Chronic Kidney Disease’s tweets like crazy which kidney-book-coverI greatly appreciate.  Hey, we’re still the new kids on the block, you know.

There’s also a profile coming up in the Medicare magazine, but I haven’t received a date for that yet.  Another radio interview – this time for SlowItDown – is in the works for July.  There’s even the possibility of public service announcements for SlowItDown in the Washington, D.C. area.  More on each of these as they’re solidified.

By the way, the first anniversary is traditionally paper.  What better gift (well, maybe that’s stretching it a bit) to give to the first anniversary celebrators of CKD families, friends, and co-workers?  Or send them over to the blog for more education.  If they print it, that’s paper, too.choclate Alex

Ah!  The light bulb goes on over my head!  I just figured out why Bear isn’t feeling the same way I am.  He doesn’t have CKD (thank goodness) and doesn’t have a compromised immune system.  His kidneys are doing a terrific job of getting rid of toxins… bless those two little guys.

Until next week,

Keep living your life!

Good bye to National Kidney Month

I thought it over and decided to print the letter The National Kidney Foundation asked me to write for the syndicated Dear Annie column (Does anyone click on links anymore?). This is what was published on March 10, three days before World Kidney Day.

Annie’s Mailbox® by Kathy Mitchell and Marcy Sugar

Dear Annie:

I switched doctors six years ago — and my world fell apart. My new doctor insisted on all kinds of new tests, and I’m glad she did. Simple blood and urine tests let me know that there was a good possibility my kidneys weren’t functioning well.

I didn’t know that there are rarely any symptoms until the kidneys are failing. I didn’t know that one in three American adults is at risk for kidney disease. I didn’t know that high blood pressure and diabetes are two of the leading causes of this disease. But I learned quickly that early detection and proper treatment can slow its progress.

I learned so much in the following months: why I need to watch my weight, why regular exercise helps and why I need to make sure my high blood pressure is under control. I’ve been able to maintain the same degree of kidney function since being diagnosed, but not without lots of information and changes in my lifestyle.

March is National Kidney Month. March 13th is World Kidney Day. Won’t you help me join the National Kidney Foundation in urging Americans to learn about the risk factors and simple blood and urine tests for kidney disease? There are many free kidney health screenings around the country. The National Kidney Foundation at kidney.org provides information about these screenings and about staying healthy.

Thank you,

Gail Rae-Garwood

Glendale, Ariz.

the National Kidney Foundation, Inc.

And Annie’s response:

Dear Gail Rae-Garwood:

Thank you so much for sharing your story. We hope our readers will take your advice and check for screenings in their area or discuss their kidney health with their personal physicians. We are sure your letter will help many. Bless you.

We all know I’m well beyond getting a kick out of seeing my name in print (sort of), so why the letter? And why the great desire – let’s make that passion – to spread Chronic Kidney Disease Awareness?

Let me offer you some more statistics from The National Kidney Foundation at http://www.kidney.org/news/newsroom/factsheets/FastFacts.cfm :

1 in 9 United States citizens have CKD.

Most of them don’t know they have it.

Blacks are three times more likely to undergo kidney failure.Book Cover

Hispanics are 1.5 times more likely.

Fewer than 17,000 have kidney transplants annually.

118,000 are on the waiting list for a kidney.

13 people die while awaiting a kidney transplant daily.

If your kidneys fail, only dialysis or transplant can keep you alive.

415,000 are on dialysis.

About 180,000 more are living transplantees.

Medical payments increase from $15,000 to $70,000 annually from stage 4 to stage 5 CKD.

Medicare pays $30 billion (yes, billion) annually on treatment for kidney failure.

image

(Photo by Nima Beckie.  Subject: Greater New York Kidney Walk participant tying his orange scarf on a lamp post midway across the Brooklyn Bridge.)

The National Center for Chronic Disease Prevention and Health Promotion at http://www.cdc.gov/diabetes/pubs/factsheets/kidney.htm offers more information:

More than 20 million people have CKD.

44% of new cases are caused by diabetes.

28% of new cases are caused by high blood pressure.warning

Between 1999 & 2010, more females than males developed CKD.

CKD occurrence increases in those over 50 years of age.

One of every three with diabetes develops CKD.

One of every five with high blood pressure develops CKD.

Men with CKD are twice as likely as women with CKD to develop kidney failure.

 

And now the National Institutes of Health at http://report.nih.gov/NIHfactsheets/ViewFactSheet :NIH

Cardiovascular disease is the main cause of death in dialysis patients.

Medicare is spending 6% of its payouts on kidney care.

Kidney disease runs in families.

warning

Of course, now you’re thoroughly grossed out and maybe scared out of your mind about ckd. Good! That’s exactly what I was aiming for.

I don’t see the point in you, your best buddy, your child, anyone who touches your life being diagnosed at stage 3 as I was. I wasted all of stage 1 and stage 2 when I could have been spending that time working to SLOW the decline of my kidneys so I could be one of the 80% of CKD patients who never needs dialysis or a transplant (and, no, I don’t mean because I already died).

And why did I was that much time instead of prolonging my life? I was never tested. That’s it. Simple, direct, and to the point. The fear here should be in having CKD and not knowing it instead of fearing you have it. If it turns out you don’t have CKD, I am extremely happy for you and maybe a bit envious. But if you do, let’s start working on prolonging your life NOW. You realize I’m not talking about a year or two, but decades here.

I want to see grandchildren, but my children aren’t ready for that yet. No problem. I am perfectly content to wait the five or ten years until they’re ready. By working hard at slowing the decline of my kidney function, I have the time to wait.baby-shots-5

The tests themselves are simple. Do you urinate? (You’d better be responding in the positive here or you’ve already got a bigger problem than CKD.) Then you can just urinate into a vial instead of the toilet. No special training needed. Ever have your blood drawn? Did you die from it? (I know, I know, but it’s a rhetorical question.) Okay, so have your blood drawn again and ask to be tested for Chronic Kidney Disease. It is not a separate blood test, but can be included in one you may be having anyway.

So it’s good bye to National Kidney Month, but not to taking care of yourself… say by having the blood and urine tests for CKD. Be a pal. If you can’t do it for yourself, do it for me. Don’t deprive the world of the pleasure of your company because you didn’t take the test.

Until next week,

Keep living your life!

 

 

It’s Still National Kidney Month

And I still have pre diabetes.  It sounds like something someone made up and maybe it is, but my A1C test result is still high and getting higher despite the changes I’ve made in my eating habits.  When better than National Kidney Month to explain why this could be a problem for those of us with Chronic Kidney Disease?kidney

We’ll need a little background here (as usual).  First, what is A1C test?  According to The Mayo Clinic at http://www.mayoclinic.org/tests-procedures/a1c-test/basics/definition/PRC-20012585,

“The A1C test result reflects your average blood sugar level for the past two to three months. Specifically, the A1C test measures what percentage of your hemoglobin — a protein in red blood cells that carries oxygen — is coated with sugar (glycated). The higher your A1C level, the poorer your blood sugar control and the higher your risk of diabetes complications.”

I’m sure you noticed how often I rely on The Mayo Clinic for definitions.  I find their simple explanations make it easier for me (and my readers) to understand the material.  I also like that they explain in their explanations. These phrases surrounded by dashes or in parentheses further clarify whatever the new term may be.

Okay, so we can see why this needs to be tested.  Now, what does it have to do with diabetes and what is diabetes anyway? This time I looked for a medical dictionary and found one at our old friend The Free Dictionary.  It’s at http://medical-dictionary.thefreedictionary.com/Diabetes+Mellitus. The mellitus is there because that’s how members of the medical field usually refer to diabetes – as diabetes mellitus. This is what I found there,

“Diabetes mellitus is a condition in which the pancreas no longer produces enough insulin or cells stop responding to the insulin that is produced, so that glucose in the blood cannot be absorbed into the cells of the body. Symptoms include frequent urination, lethargy, excessive thirst, and hunger. The treatment includes changes in diet, oral medications, and in some cases, daily injections of insulin.”

Book CoverIn What Is It And How Did I Get It? Early Stage Chronic Kidney Disease I define glucose as the main sugar found in the blood.  I go on to explain that in diabetes, the body doesn’t adequately control natural and ingested sugar.  The Free Dictionary definition shows us how the body loses control of insulin production and what it means for the glucose levels… which is what the A1C test measures.

So… PRE diabetes? What’s that?  Funny you should ask. The English teacher in me can tell you that pre is a prefix (group of letters added at the beginning of a word that changes its meaning) meaning before.  Pre diabetes literally means before diabetes which makes no sense to me because that would mean everyone without diabetes was pre diabetic.  It helped me understand when I was told pre diabetes was formerly called borderline diabetes (a much better term for it in my way of thinking).

This time I went to WebMD for a simple explanation.  In addition to learning that pre diabetes means your glucose, while not diabetic, is higher than normal, I found this interesting statement:

“When glucose builds up in the blood, it can damage the tiny blood vessels in the kidneys, heart, eyes, and nervous system.”  KIDNEYS!

You can read more about this at http://www.webmd.com/diabetes/guide/what-is-prediabetes-or-borderline-diabetes.

Well, then what’s a normal level you ask? According to my primary care physician, 4.8-6.0 is normal BUT this range needs to be adjusted for Chronic Kidney Disease patients.  I (what else?) looked this up at Lab Tests Online http://labtestsonline.org/understanding/analytes/a1c/tab/test and found more of a range:

  • A nondiabetic person will have an A1C result less than 5.7%.
  • Diabetes: A1C level is 6.5% or higher.glucose
  • Increased risk of developing diabetes in the future: A1c of 5.7% to 6.4%

My result was 6 in the emergency room last November.  During my regularly scheduled CKD yearly lab last September, it was 5.9 with a big H (for high) next to it.  The August before that it had been 6.1.  Back in January of last year, it was 6.  I seem to be staying in a very close range for over a year, but it’s still pre diabetes.

All right then, what’s normal for a CKD patient?  I don’t know.  Life Options says just keep it under 6.5 (http://lifeoptions.org/kidneyinfo/labvalues.php). The rest of the internet seems to think the A1C results need to be adjusted only if you have both diabetes and CKD.  Looks like my nephrologist and I will have to have another talk about this.

You would think the danger of an elevated A1C  would be diabetes, but I’m wondering if the damage to those tiny blood vessels may be worse.

diabetes_symptomsHave I raised questions in your mind?  Is your A1C normal?  How do you tell if different sources hold different values as normal?  Time to ask your doctor.  And time to remind you again, that I am NOT a doctor, just a CKD patient with loads of questions and a willingness to research some answers for us all. Something to consider.

Other things to consider: have you had your kidneys tested?  It’s a simple blood test and a simple urine test.  Sure you don’t have the time, but no one does.  Then again, it’s sure worth it to avoid the need for dialysis (now THAT takes time) and a transplant down the road.

You know that 59% of our country’s population is at risk for CKD, but did you know that 13 million U.S. citizens have undiagnosed CKD?  That’s scary.  Take the test.

Here’s a link to the letter I wrote for Dear Annie – a nationally syndicated column – for National Kidney Month: http://m.spokesman.com/stories/2014/mar/10/annies-mailbox-learn-risk-factors-of-kidney/ It appeared on March 10, 2014 just prior to March 13 World Kidney Day.Nima braceket

Above is a picture of Nima. She’s pointing to the bracelet I gave her that she’s wearing so that I would be with her on last year’s Greater New York Kidney Walk while I was actually ill back home in Arizona.

Until next week (and the last day of National Kidney Month),

Keep living your life!

Oh, By The Way….

In honor of National Kidney Month, I asked my daughter Nima Beckie (blogger extraordinaire at Is What It  Is) to guest blog explaining what it’s like to be the grown child of a Chronic Kidney Disease patient.  I think she’s outdone herself (of course, I might just be a smidgen prejudiced, but I don’t think so.)nima kidney

Several years ago my mom, Gail Rae-Garwood, came to us all and told us she’d been diagnosed with Chronic Kidney Disease. At the time none of us had the first clue what that meant (Actually, at the time I might have thought it was a distant cousin of an EKG.) and couldn’t quite put two and two together.

I’m caring by nature and want to help, almost to the point where it can become overbearing. From my uneducated fear came wanting to make sure my mother was getting enough rest if we were out when I was visiting and asking all the time, “Have you had enough? Do you need a rest?”

laIf you’re an adult child with parents who have kidney disease…DON’T DO THIS!!! What I learned along the way is that while your parents and loved ones truly appreciate your care and concern, they don’t want you babying, coddling, or suffocating them.

Here’s what you CAN do instead. Ask questions and educate yourself. Get involved in the kidney community when you can. Show your support that way.

I got involved because my mother wrote What Is It And How Did I Get It? Early Stage Chronic Kidney Disease. I helped out by acting as a reader for her, and then helping her approach the somewhat awkward (for her) task of Social Media.

The more I went back and read her blog, or helped out with Facebook, or Twitter, or read chapters of the book, the more educated about Chronic Kidney Disease I became.

I know that too much information thrown at you once can be like “Whoa?! What?!” Honestly, I still refer to the blood test I get to check for kidney disease as a BUN (the kind you eat) as opposed to a B.U.N., and am still not in the least bit fluent in medicalese.Book Cover

Last October, I took a big step—actually about eight miles worth of them. It was important to me to not just be an activist for the kidney community online but in person as well.

I made my way to Foley Square in New York City near where I live (close to my Mom’s hometown), donned an orange tee-shirt, and spent my morning volunteering for the GNYKF (Greater New York Kidney Foundation).

I helped others who were there to walk sign the banner that would be carried in front of the walkers. I’d ask each person, “Why are you here?” “Who are you walking for today?” So many faces, and so many stories and there isn’t one that didn’t touch my heart.ny pix

A lot of people were there for there for their family members, some who sadly didn’t make it. One was a dad whose 12 year old son was waiting for his second transplant, as the first one didn’t take. He was so proud of his son, but you could see the fear and hurt for his son in his eyes.

Another woman looked at me, and said, “I’m here because I’m waiting for a kidney. Is that a good enough reason?” I quickly walked around to the other side of the table to give her a big hug. I told her, just like, I’ll telling all of you. “I want you to know you are my hero. I know how hard you fight everyday, and I know it’s not always easy. I see you.” She said her husband told her that all the time, and she never believed him.

Another little girl was there because a girl in her class “…was sick with kidney disease” and she wanted to help her. I asked her if she knew where her kidneys were… (Sort of…). I showed her, and told her, “You are doing an awesome thing for your friend and should be so proud of yourself.” Then I made her give herself a pat on the back (and may have whispered to her mom that there was a face painting table in the corner ;) )GNY

Lastly, I walked with so many people all wearing orange all the way over the Brooklyn Bridge and back – all in support of the same cause, all hoping for a cure. On the way back, I managed to snap a picture of a man taking his orange bandana from his head, and tying it at the halfway point of the Brooklyn Bridge for people fighting kidney disease everywhere.

There really are no words for moments like that. I’d worn the bracelet my mom bought for me not long after she’d moved to Glendale so she’d be with me. As I got to the finish line, the song “New York State of Mind” by Alicia Keys was playing, which was just so perfect, since I was walking for my mom in her home state. I crossed under the balloons, and called my mom.

She couldn’t pick up because she was having a bad day. Severe bronchitis from a weakened immune system. I left a voicemail, “I want you to know, this is for you. I see everything you do. I know how hard you work, even on days when it isn’t always easy, because you don’t feel well. I know how much you help people. You are and forever will be my hero. I love you.” I’ll let her tell you what she said in response…I still have it saved on my phone.sad

Here’s my last piece of advice, and it’s a biggie. Get yourself tested. Every time you go to a doctor, it’s up to you to mention to your doctor, ”Oh by the way…I have a family member that has kidney disease,” and request both your B.U.N and creatinine levels. This is simple blood work that takes two seconds but, in the end, could save you a lot of heartache.

Actually, I want to take that back a second, EVEN IF YOU DON’T have a family member with kidney disease, you should be getting checked regularly and educating yourself.

kidney-month-2014-v1More than half the population in this country is at risk for kidney disease and many of them don’t know it. That’s an awfully big number, and it doesn’t need to be. A smart lady who you may know raised me to believe that knowledge is power.  Educate yourselves, educate your friends, and get tested…Happy National Kidney Month!!

Well done, honey.

Until next week,

Keep living your  life!

World Kidney Day

World Kidney DayThursday, March 13th, is World Kidney Day.  It’s always the second Thursday in March. But what is it?  And who started it?  And why? As you can see, I have questions, lots of questions and always.

Between my step-daughter’s helping me update the look of the blog, fulfilling TheNephrologist.com’s suggestion that I add an About Me link (Let me know what you think about the About Me), and all the day to day tasks of life, this question has been nagging at me. Sure I could live a happy life without answering it, but why? (See what I mean about always having a question?)

I discovered this is a fairly new designation. It was only eight years ago that it was initiated.

According to http://worldkidneyday.org, “World Kidney Day aims to raise awareness of the importance of our kidneys to our overall health and to reduce the frequency and impact of kidney disease and its associated health problems worldwide.”

Sound familiar?  That’s where I’m heading with SlowItDown, What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, and this blog. We may be running along different tracks, but we’re headed in the same direction.kidney-book-cover

The 54 year old International Society of Nephrology (ISN) – a non-profit group spreading over 126 countries – is one part of the equation for their success.  Add to that the 15 year old International Society of Nephrology (ISN) – another non-profit located in 41 countries – along with a steering committee, The World Kidney Day Team and you have the makings of this particular concept.

While 157 countries celebrated last year, I suspect this year even more countries will be involved.  Why, you ask? (Oh, good, someone else asking questions.)  This year’s theme is Chronic Kidney Disease and Aging. We all age… in every country… in every part of the world… whether we’ve been diagnosed with CKD or not.

While there are numerous objectives for this year’s World Kidney Day, the one that lays closest to my heart is this one: “Educate all medical professionals about their key role in detecting and reducing the risk of CKD, particularly in high risk populations.”

If only my nurse practitioner had been trained, she could have warned me immediately that I needed to make lifestyle changes so the decline of my kidney function could have been slowed down earlier. How much more of my kidney function would I still have if I’d known earlier?  It’s too late for me. That was six years ago and this shouldn’t still be happening… but it is.weeping

I received a phone call last week that just about broke my heart.  Someone very dear to me sobbed, “He’s dying.” When I calmed her down, she explained a parent was sent to a nephrologist who told him he has end stage renal disease and needed dialysis or transplantation immediately.

I pried a little trying to get her to admit he’d been diagnosed before end stage, but she simply didn’t know what I was talking about.  There had been no diagnose of chronic kidney disease up to this point. There was diabetes, apparently out of control diabetes, but no one impressed upon this man that diabetes is the foremost cause of CKD.

What a waste of the precious time he could have had to do more than stop smoking, which he did (to his credit), the moment he was told it would help with the diabetes.  Would he be where he is now if his medical practitioners knew more about what he could have done to detect the disease, especially since this man is high risk due to his age and diabetes?  I fervently believe so.

While this is a terribly dramatic scenario, it happened and I’m willing to bet it’s happening more than we know.  I, for one, am more than happy we now have World Kidney Day.

Their site offers materials and ideas for celebrations as well as a page to post your own activity.  Take a look at the map of global celebrations and prepare to be awed at how wide spread World Kidney Day celebrations are.

Before you leave their page, take a detour to Kidney FAQ (Frequently Asked Questions) on the toolbar at the top of the page.  You can learn everything you need to know from what the kidneys do to what the symptoms (or lack thereof) of CKD are, from how to treat CKD to what to ask your doctor, and a toolbox full of helpful education about your kidneys to preventative measures.

BearandmeI have a close friend who is involved in the local senior center where she lives.  She says she doesn’t know anyone else but me who has this disease.  Since 1 out of every 10 people does and being over 60 places you in a high risk group, I wonder how many of her friends don’t know they have CKD or don’t even know they need to be tested.  I’d rather be mistaken here, but I’m afraid I’m not.

For those of you who have forgotten (easily read explanations of what results of the different items on your tests mean are in What Is It And How Did I Get It? Early Stage Chronic Kidney Disease), all it takes is a blood test and a urine test.  I have routine blood tests every three months to monitor a medication I’m taking.  It was in this test, a test I took anyway, that my family physician uncovered Chronic Kidney Disease as a problem.

On the home front, I’ve been thinking about how much time and energy it takes to stay up and running.  I have allergies, but I am NOT removing my sweet Bella from our home.  Since the antibodies in the immunology injections do not affect the kidneys in any way, I’ve opted to go that route.IMAG0269 (1)

The plantar fasciitis is still a pain (Get it? Are you groaning?), so I asked the podiatrist to help me fight it without medication. I’m looking forward to enjoying dancing again without having to pay for it afterwards.  More ice, more exercise, more rest.  I can find a way to do that.

Until next week (when it will still be National Kidney Month),

Keep living your life!

March and National Kidney Month are Hare, I Mean Here.

My wake up alarm is the song ‘Good Morning,’ and that’s exactly what this is.  The sun is out, it’s warm but not hot, I’m listening to some good music, and I’m alone in the house for the first time since Bear’s October surgery.  I am thankful that he is driving himself to his doctors’ appointments. That is progress!   desktop

Talking about progress, it’s National Kidney Month and you know what that means… a recap of many of the organizations listed in What Is It And How Did I Get It? Early Stage Chronic Kidney Disease that may help with your Chronic Kidney Disease.  Ready?  Let’s start.

{I’m only including online addresses since this is on online blog.}

 

American Association of Kidney Patients (AAKP) 

https://www.aakp.org

MARCH IS NATIONAL KIDNEY MONTH (from AAKP’s website)

This is an advocacy group originally started by several dialysis patients in Brooklyn in 1969.  While they are highly involved with legislation, I see their education as the most important aspect of the group for my readers.

“Take some time and browse through our educational resources including our Resource Library that contains past and present published information from the American Association of Kidney Patients. Educate yourself on specific conditions, medicine, lifestyle improvement and get the latest news and information from the renal community.”

kidney-month-2014-v1  The American Kidney Fund

     http://www.kidneyfund.org/

While they work more with end stage Chronic Kidney Disease patients, they also have an education and a get tested program.

“The mission of the American Kidney Fund is to fight kidney disease through direct financial support to patients in need; health education; and prevention efforts.”

National Kidney Disease Education Program

www.nkdep.nih.gov

This is an example of the many videos available on this site.  They are also available in Spanish.

What is chronic kidney disease? Approach 1 A doctor explains what chronic kidney disease (CKD) is and who is most at risk. Learn more about diabetes, high blood pressure, and other kidney disease risk factors. Length 00:53  Category CKD & Risk

One of my favorites for their easily understood explanations and suggestions.  Their mission? “Improving the understanding, detection, and management of kidney disease.”  They succeed.

National Kidney Foundation

www.kidney.org

http://www.youtube.com/watch?v=s2U2iZQxkqI#t=1 (This is the link to their National Kidney Month Rap with Sidney the Kidney)

I have guest blogged for them several times and been glad to work with them whenever they need me.  The website is thoroughly helpful and easy to navigate. This is what you find if you click on ‘Kidney Disease’ at the top of their home page. What I really like about this site is that it’s totally not intimidating.  Come to think of it, none of them are, but this one feels the best to me.  (I can just hear my friends now, “Oh, there she goes with that spiritual stuff again.”  One word to them: absolutely!) Notice the Ask the Doctor function.

National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC)

www.kidney.niddk.nih.gov  National Institute of Diabetes and Digestive and Kidney Diseases Logo.

“Just the facts, ma’am,” said Sergeant Friday on an old television show and that’s what you get here.

This is their mission statement:

The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) is a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health of the U.S. Department of Health and Human Services.

Established in 1987, the Clearinghouse provides information about diseases of the kidneys and urologic system to people with kidney and urologic disorders and to their families, health care professionals, and the public. The NKUDIC answers inquiries, develops and distributes publications, and works closely with professional and patient organizations and Government agencies to coordinate resources about kidney and urologic diseases.

And let’s not forget

 Renal Support Network

www.rsnhope.org

This was initiated by a Chronic Kidney Disease survivor.  The part I like the best is the Hopeline.  While I have not called myself, I have referred people who were newly diagnosed and, well, freaking out.  I couldn’t tell them what the experience of dialysis is like, but these people can.

Renal Support Network (RSN) is a nonprofit, patient-focused, patient-run organization that provides non-medical services to those affected by chronic kidney disease (CKD)….  Call our Hopeline (800) 579-1970 (toll-free) Monday through Friday from 10am to 6pm (PT) to talk to a Person who has lived kidney disease.

Baxter Healthcare Corporation.

http://www.renalinfo.com/us

“… web site designed and developed to provide information and support to those affected by kidney failure. Renalinfo.com is supported through and educational grant from Baxter Healthcare Ltd, a company that supplies dialysis equipment and services to kidney patients worldwide.

They have all the information a newly diagnosed CKD patient could want and, while funded by a private company, do not allow paid advertisements.  Their site map is proof of just how comprehensive they are.

While many of the other sites offer their information in Spanish as well as English, if you click through the change language function here, you’ll notice there are many languages available.

Rest assured that these are not the only organizations that offer support and education.  Who knows?  We may even decide to continue this next week, although that’s so close to March 13th’s World Kidney Day that we’ll probably blog about that for next week.

I interrupt myself here to give you what I consider an important commercial message.  Remember that game I play about using the money from the book to pay off what I paid to produce the book so I can put more money into donations of the book?  There was a point when sales covered the cost of publishing.  Now they’ve covered the cost of digitalizing the book so it could be sold as an e-book.  Another milestone!  (Now there’s just about $15,000 worth of donations to pay off.)54603_4833997811387_1521243709_o

While I’m at it, I find I cannot recommend Medical Surgical Nursing: Critical Thinking for Collaborative Care, 4th Ed. but only because it was published in 2002.  The world of nephrology has changed quite a bit since then and continues to change daily. While I enjoyed the information, I’m simply not convinced it’s still applicable.

For those of you who are newly diagnosed, I sincerely wish these websites give you a starting point so you don’t feel so alone. (I’m sorry the book isn’t interactive.)

Until next week,

Keep living your life!

I Feel Like a Heel

I do.  And I have for months.  But I didn’t want to have this checked for months. I’m writing about what turned out to be plantar fasciitis, an inflammation of the connective tissue which supports the arch of the foot and is located between the heel and the ball of the foot. It is caused by small, repetitive trauma to this area.  It almost sounds like carpal tunnel of the foot.  I am being humorous here; don’t take that seriously.

When this first showed up, Bear and I jokingly decided at least one of us should be able to walk. While he’s definitely healing, he’s still wheelchair bound (which is the better than the bed bound that he was for the first GmM8B2ylPUP0lIuKR9OqrzOqFEOtJtRaf2Rpt6ncsBkmonth after surgery… got to look on the bright side) after incurring a non-displaced fracture in the same foot  he had the surgery on.  His three fused joints and torn ligament in that foot were halfway healed at that point. Luckily, the metal in there was not damaged in the fall that caused the broken bone.

I had a referral for a podiatrist from my primary care doctor and I sat on it, until I realized that was what I was doing. I shook my head, took a deep breath, and made the call for an appointment.  I’m glad I did.  My fear had been that I would need surgery on the bone spurs in my heel.  Bear and I may have been joking, but I really did – and do – feel I need to be able to walk until he can.

Plantar fasciitis has nothing, I repeat nothing, to do with the bone spurs in my case  – although they can be a risk factor.

According to Beth Israel Deaconess Medical Center at http://www.bidmc.org/YourHealth/Conditions-AZ/Chronic-kidney-disease.aspx?ChunkID=11621

Plantar fasciitis is most common in people who are 40-60 years old. (How kind of my body to wait the extra seven years.)

Other risk factors that increase your chance of getting plantar fasciitis include:

Physical exertion (like wrestling a wheelchair in and out of the car or pushing it uphill?), especially in sports such as:

Running

Volleyball

Tennisimages (1)

A sudden increase in exercise intensity (Yeah, it’s got to be that Olympic sport of wheelchair wrangling) or duration

Physical activity that stresses the plantar fascia

People who spend a lot of time standing

A sudden increase in activities that affect the feet

Obesity or weight gain (Ummmmm)

Pre-existing foot problems, including an abnormally tight Achilles tendon, flat feet, or an ankle that rolls inward too much

Poor footwear (Ack!  Grew up with that and overcompensated with exactly the wrong kind of shoes as an adult.)

Heel spurs (Luckily for me, not in my case)heel spur

Agave Foot Specialists, the podiatrists I chose, are treating it with rest – one of the hardest things for me to do, even in my ‘retirement.’ When I explained that I needed to exercise at least half an hour daily for the Chronic Kidney Disease, they amended that to using the stationary bike (Well, they gave me a handout that included cross-training.  I wasn’t sure what that was, but I’m good at asking.) It almost felt good to get back on the bike this morning.

They also suggested swimming (Moi?  With my aversion to being in bodies of water?), certain kinds of yoga, and certain kinds of weight training.  I’ll stick with the stationary bike, thanks.

But that, of course, is not all.  I already messed this one up by misreading, but I’ll do it right tonight!  I’m to freeze a sports bottle (still not sure how that’s different from a regular bottle) and roll it over my arch for 20 minutes every evening.  Not bad, I can read while I do that… I think.

I also need to stretch my calf multiple times a day.  That’s not hard to do.  Remembering to do it is the hard part.

Here’s the kicker (ouch!): I have to wear shoes that meet the following criteria:

A firm heel counter.  I had to ask look that up.  I found this definition at http://shoesglossary.com/heel-counters, “A piece of leather forming the back of a shoe or boot. A heel counter may be used to stiffen the material around the heel and to give support to the foot.”  Oh no, that means I just bought two pair of shoes that won’t do since they’re sandals and have no heel counter.

A rigid shank (the part of the shoe between the inner and outer soles).  Now you see why I bought those two pair of shoes.

A flexible toe.  At least I got that part right.

Give me two weeks and I’ll be able to tell you whether I have a handle on the plantar fasciitis or not.

Kidney Book CoverMy dear friend and neighbor, Amy, just came in for our occasional coffee klatch.  While we were talking I told her about SlowItDown’s new website.  That was news to her.  Since she reads the blog religiously, it’s probably news to you, too.  Have a gander.  The address is http://www.gail-rae.com.  Suggestions and comments are welcome, as usual! Don’t forget to tell us which communities you’d like us to contact.

It also came up in conversation that I never told anyone that I’ve had a Certificate of Completion in Perspectives in Adherence from The American Kidney Fund since 11/09/11.  So, I do have some training concerning Chronic Kidney Disease other than my experience as a patient and my research, but I am STILL not a doctor.  Anything you read on the blog, Facebook page, or Twitter that I’ve written STILL needs to be run by your nephrologist before you heed that advice.

I’m taking a class at Landmark. Aren’t I always? At the last class meeting, one of my classmates asked me to tell her the story of how the book came to.  I realized I haven’t discussed the book on the blog in ages. Do take a look on Amazon.com or B&N.com to read the description and order a bunch.  Be wary of textbook companies that offer to rent you the book for most than it costs to buy it ($12.95) and remember the e-book is less expensive at $9.95.  Amazon has a wonderful program by which you can order a print book – or if you have ever ordered a print book – you can order the e-book at a 70% discount.  Another terrific way to save some money is to join with a friend and pool your order for that Amazon discount.

Time to go meet my step-daughter’s sweetie’s family!

Until next week,Book Cover

Keep living your life!

The Dizzying Array of D Vitamins

I’ve been taking vitamin D supplements for seven years and apparently I’ve become complacent about them.  When Bear’s PCP prescribed vitamin D supplements for him, I piped up telling her we have mine at home and – if the dosage was what he needed -could probably just share the bottle.

Bear checked it when we got home and asked, “These are D3.  Can I take them?”  Bing!  Today’s blog. I didn’t know if he could take them, but did know it was time to research the D vitamins again.

Let’s start at the beginning.  What does vitamin D do for us? According to What Is It And How Did I Get It? Early Stage Chronic Kidney Disease,  it “Regulates calcium and phosphorous blood levels as well as promoting bone formation, among other tasks – affects the immune system.”  Short, sweet, and to the point.Book Cover

But I think we need more here. Why are there are different kinds of vitamin D? I went to Buzzle (my new favorite for easily understood renal information) at http://www.buzzle.com/articles/different-types-of-vitamin-d.html and hit pay dirt on my first foray.

There are five different types of vitamin D.  It seems to me that the source designates which number it is.  For example, vitamin D2 comes from plants, small invertebrates, and fungus (Pay attention, vegans.) while the D3 that I take is manufactured synthetically. The designation D1 is no longer used, D4 is such a recent discovery that not much is known about it, and D5 is not technically a vitamin.images

By the way, if your vitamin bottle doesn’t have a number after the D, that means it’s D2 or D3. You should know that the kidneys are responsible for transforming calcitriol into active vitamin D.

So, the sunshine vitamin is produced by our own bodies, but sometimes not at the rate we need it.  Hence, we are prescribed vitamin supplements.  As Chronic Kidney Disease patients, we need the extra vitamin D – whether from nature (D2) or synthetically produced (D3).

Why you ask? DaVita at http://www.davita.com/kidney-disease/diet-and-nutrition/diet-basics/the-abcs-of-vitamins-for-kidney-patients/e/5311 offers us this handy information:

Vitamin D Helps the body absorb calcium and phosphorus; deposits   these minerals in bones and teeth; regulates parathyroid hormone (PTH) In CKD the kidney loses the ability to make vitamin D   active.  Supplementation with special active vitamin D is determined by   calcium, phosphorus and PTH levels….

The site also suggests that vitamin D be by prescription only and closely monitored.  Since it was my PCP who prescribed it for me (seven years ago as a CKD patient) and for Bear (last week and not a CKD patient), I’m wondering if that caveat is for end stage Chronic Kidney Disease patients.

Notice we have a new term in the description above – parathyroid hormone. That’s not as odd as it sounds.  There is currently a controversy as to whether vitamin D is a vitamin or a hormone, since it is the only vitamin produced by the body.  Parathyroid hormone (PTH) explained:

The parathyroid glands are located in the neck, near or attached to the back side of the thyroid gland. Parathyroid hormone controls calcium, phosphorus, and vitamin D levels in the blood and bone.

Release of PTH is controlled by the level of calcium in the blood. Low blood calcium levels cause increased PTH to be released, while high blood calcium levels block PTH release.

fishAnd here you thought the kidneys worked alone to control these levels in the blood.  Thanks to MedLine Plus at http://www.nlm.nih.gov/medlineplus/ency/article/003690.htm for correcting us. This National Institutes of Health site is a constant fount of pretty much any kind of health information you may need.

Okay, so let’s say you don’t take the vitamin D supplements you need.  What happens to you then? I jumped right on to the Mayo Clinic site at http://www.mayoclinic.org/vitamin-d-deficiency/expert-answers/FAQ-20058397, but found their answer too general for my needs: “Vitamin D deficiency — when the level of vitamin D in your body is too low — can cause your bones to become thin, brittle or misshapen.”

The irony of this is that we live in the sunshine state.  Only 20 minutes of sun a day could give us the vitamin D we need… and melanoma.  Having had a brush with a precancerous growth already, I’m not willing to take the chance; hence, the supplements.

Let’s not forget that vitamin D also helps absorb calcium and phosphorous, so it’s not just your bones that are at stake, important as they are. I went back to the National Institutes of Health at http://ods.od.nih.gov/factsheets/VitaminD-QuickFacts/ for more information. This is what they have to say:

Vitamin D is important to the body in many other ways as well. Muscles need it to move, for example, nerves need it to carry messages between the brain and every body part, and the immune system needs vitamin D to fight off invading bacteria and viruses.

Aha!  Keep in mind that as CKD patients our immune systems are already compromised and you’ll realize just how important this vitamin is to us.sun-graphic1

Let’s try it the other way.  Let’s say you are so gung ho on the benefits of vitamin D supplementation, that you take more than your doctor prescribed.  Is that a problem?  According to WebMD at http://www.webmd.com/osteoporosis/features/the-truth-about-vitamin-d-can-you-get-too-much-vitamin-d  it is:

Too much vitamin D can cause an abnormally high blood calcium level, which could result in nausea, constipation, confusion, abnormal heart rhythm, and even kidney stones.

To sum up, you may be vitamin D deficient.  Your blood tests will let you know.  If it is recommended you take vitamin D supplements, stick to the prescribed dosage – no more, no less.  While some foods like fatty fishes can offer you vitamin D, it’s not really enough to make a difference.

I get so caught up in my research that I often forget to mention what’s happening with the book or SlowItDown.  Back were discussed on this podcast http://www.stitcher.com/podcast/mathea-ford-2/renal-diet-headquarters?refid=stpr.  Renal Diet Headquarters interviewed me and I had a ball!  I must learn to be quiet just a little and let the interviewer get to ask the questions before I start answering them!

kidney-book-coverSlowItDown also has a new website at www.gail-rae.com. I would appreciate your feedback on this.

I hope you had a wonderful Valentine’s Day by yourself, with your love, your family, your friends, your animals, whoever you spent it with.

Until next week,

Keep living your life!

Sometimes I’m Down

Sometimes I get down, even when good things are happening in my life.  For example, the podcast discussing SlowItDown will be available at www.renaldiethq.com/008  as of 6 a.m. this Wednesday.  That’s a good thing, right?  And Bear felt up to going to a movie yesterday.  That’s another good thing.  Yet, my heart is heavy.kidney-book-cover

That, of course, got me to wondering if this had anything to do with Chronic Kidney Disease.  And it turns out, it does.  While this sadness seems to always to be short term for me, it comes and goes for no apparent reason.

So I did what I do best.  I researched… and found more than I’d expected about this subject.

Way back in 2009, The National Kidney Foundation, Inc. published their findings after performing a study,

“Depression has long been associated with end stage kidney disease, but a new study published today in the American Journal of Kidney Diseases, the official journal of the National Kidney Foundation, found that 20% of patients with early stage chronic kidney disease (CKD) also suffered from depression.”

You can read the rest of this short, but informative article at http://www.medicalnewstoday.com/releases/162766.php

sadLooking further back, I noticed that in 2006,  US National Library of Medicine, National Institutes of Health published a study on its PubMed.gov site calling for “…further well-designed, longitudinal, survival studies to clarify the relationship better between depression and the different stages of renal dysfunction.”  This is a bit more technical, but you can find it at http://www.ncbi.nlm.nih.gov/pubmed/16412828.

So there is a connection.  And I fell into that connection.  Which doesn’t mean that I’m clinically depressed or that I need treatment.  What it does mean is that I need to accept that I will have my down days now and again… and they will pass.

Somehow, it strikes me that everyone – CKD patient or not – has such days.

DaVita, the company that provides the trained educators who go into the community for SlowItDown, has this to say about depression and CKD:

“Depression can have many causes. In the case of someone who has just been diagnosed with chronic kidney disease there may be a lot of information to process about your physical health, which may lead to strong emotions about your life and how it may change. Similarly, once a person reaches end stage renal disease and begins dialysis, there are lifestyle adjustments to be made that could bring up feelings of despair. Many times these feelings are temporary; however, if you find you’re having difficulty don’t hesitate to get the help you need.”

They’ve got more information about this disease and depression on their website, particularly at http://www.davita.com/kidney-disease/overview/living-with-ckd/depression-and-chronic-kidney-disease/e/4917sad woman

It made sense to look at the other end and see if depression caused CKD, just as diabetes and/or high blood pressure may be both caused by CKD and may be the cause of CKD. The following is from a private mental health center in Scottsdale.  It’s especially interesting because of the size and duration of the study – 5,785 subjects under scrutiny for 10 years.  It is also specific to CKD patients, although it is from 2010.

“This particular study concluded that the patient population suffering from depression was more likely to develop kidney disease and a decline in kidney function. These studies are still in the very early stages and should not alarm anyone suffering from depression but should act as a motivator to encourage individuals to seek help for their depressive symptoms. On the other hand, it is known that depression is very common among patients with chronic kidney disease and studies have shown that if the depression is left untreated; the prognosis of the kidney diseases is much worse.”

I found the above at http://psychiatristscottsdale.com/depression-and-kidney-disease/

Fresenius Medical Care, which is actually a dialysis provider, (no, I don’t need dialysis; I just liked the comforting information on their site.) offers this distinction between common mood swings and depression:

“You may already know that people with chronic diseases are even more prone to depression …. Depression is a broad term that describes a set of mood disorders. Some are long-term and some are short-term. Certain types are milder, while others are very strong and very harmful. For our purposes, we will place them into two groups: Common mood swings and Ongoing depression

Everyone has common mood swings. They may look like depression, because you feel sad, discouraged, lack energy, may lose sleep, or doubt yourself over some event or relationship. These moods last from a few hours to a few days, and then subside. Clinically speaking, this is not depression, but a normal response to life changes.”

There’s more at http://www.ultracare-dialysis.com/KidneyDisease/CopingWithKidneyDisease/Depression.aspx#sthash.WnJm91YA.dpuf

It makes sense to list the symptoms of actual depression here so you can tell the difference between common mood swings and depression.Book Cover

Make The Connection, a veterans’ support site at http://maketheconnection.net/conditions/depression?utm_source=adcenter&utm_medium=cpc&utm_term=symptoms%20of%20major%20depressive%20disorder&utm_content=signs&utm_campaign=depression tells us:

“Not everyone with depression has the same symptoms or feels the same way. One person might have difficulty sitting still, while another may find it hard to get out of bed each day. Other symptoms that may be signs of depression or may go along with being depressed include:

You need to be careful.  If you suspect you have depression, make sure you seek professional help.  Not everyone gets to the point of feeling suicidal, but you want to make sure you don’t.

firworksI love it!  Just by writing about depression (or common mood swings in my case), I feel cleared of it.  Maybe a little knowledge is a dangerous thing, but I find it helps me cope.

Until next week,

Keep living your life

I’m Tired.

baby-shots-5I’m tired.  I’m almost always tired.  That is my most prevalent complaint lately.  And why?  Because I have Chronic Kidney Disease, Stage 3A. I thought I remembered this particular symptom doesn’t appear until dialysis starts – at stage 5 – so I decided to re-research my research… and surprised myself with the results.

Just in case you don’t remember, I retired from teaching at the community college last February (right after my 66th birthday) and from acting a month later. Two careers down and a year older, I’m still tired. True, I do blog every week and work on SlowItDown.  However, it’s still two careers down.

I was becoming concerned.  According to Donna D. Ignatavicius, MS RN, and M. Linda Workman, Ph.D, authors of Medical-Surgical Nursing: Critical Thinking for Collaborative Care, I shouldn’t be.  They explain that patients with early symptoms of chronic renal failure may complain of a general feeling of illness and that lack of energy and fatigue are often reported without any identifiable cause.

By the way, the book is available on Amazon, but I cannot recommend it yet since I just ordered it.  More on that after I read it. Okay, so maybe my CKD hadn’t advanced and maybe I hadn’t developed diabetes. Maybe it was just the stage of CKD I was in.

I wanted to check with my old standby, The Mayo Clinic.  Their website told me: “Signs and symptoms of kidney disease may include:Location of Kidneys

  • Nausea
  • Vomiting
  • Loss of appetite
  • Fatigue and weakness
  • Sleep problems
  • Changes in urine output
  • Decreased mental sharpness
  • Muscle twitches and cramps
  • Hiccups
  • Swelling of feet and ankles
  • Persistent itching
  • Chest pain, if fluid builds up around the lining of the heart
  • Shortness of breath, if fluid builds up in the lungs
  • High blood pressure (hypertension) that’s difficult to control”

You can read more about these symptoms at: http://www.mayoclinic.org/diseases-conditions/kidney-disease/basics/symptoms/con-20026778

Wait a minute!  Where in heaven’s name was loss of appetite when you needed it!  Here I am with CKD, aging, exercising, following the renal diet, and not losing weight. I realize that sounds pretty shallow.  Let me explain.  My weight has always been a problem.  I’m not saying I WANT another symptom of CKD, but since I have CKD anyway, I would have preferred that symptom.

hiccupsI also had never questioned why I have hiccups so often.  Bear thought it was that I ate too fast, so I slowed down. (Hey, almost 45 years of running up to the fourth floor cafeteria, waiting in line, and then bolting down your food so you can get to the restroom and drop off your reports in the office three flights back down before teaching your next class doesn’t dissipate that quickly.  Long term habits….)

And why is fatigue a symptom of CKD in the first place?  I found the following at: http://www.kidneyabc.com/ckd-treatment/991.html (Which looks like it might just be a Chinese herbal site; it wasn’t quite clear.): “Fatigue in CKD (Chronic Kidney Disease) is most often caused by anemia in which the count of red blood cells are lower than normal. As red blood cells distribute oxygen to body tissues and cells, a shortage of oxygen can cause fatigue. Anemia begins in early stage of CKD, and tends to get worse as renal function decreases and less erythropoietin (EPO) is produced by kidneys.”

new blog shotThis is something that I explained in What Is It And How Did I Get It? Early Stage Chronic Kidney Disease. I’ve been diagnosed with non-anemic low iron levels. Well, it’s nice to know I’m not anemic, but the low levels of iron produce the same fatigue. Why?

The National Kidney and Urologic Diseases. Information Clearinghouse at http://kidney.niddk.nih.gov/kudiseases/pubs/anemia/anemia_508.pdf explains: “Healthy kidneys produce a hormone called erythropoietin, or EPO, which stimulates the bone marrow to produce the proper number of red blood cells needed to carry oxygen to vital organs.  Diseased kidney, however, often don’t make enough EPO. As a result, the bone marrow makes fewer red blood cells.”

You can’t correct it by simply taking EPO injections.  It’s just not that simple.  To quote what I wrote in my book, “…EPO can worsen your HBP – which can both cause and be caused by CKD.  Most nephrologists agree it’s better to take the EPO injections and increase your HBP medication to control your hypertension. “

That was thought to be true when I researched for the book over three years ago, but since then the medical science community has discovered that synthetic EPO may be harmful to your body in that it may cause the body to produce antibodies for EOP.  Then your liver becomes involved, too, since it produces a small amount of EPO.flu

So, what can you do for this fatigue?  I went to the same Chinese herbal site because their recommendations were simply so logical.

“Regular exercises have many benefits for stage 3 CKD patients:

Boost your energy.

Improve your immune system.

Alleviate edema.

Lower high blood pressure.

Aerobic exercises such as walking, jogging, dancing, swimming, etc. are preferred. And remember to avoid strenuous exercises.”

How can you argue with that?  I couldn’t, especially since dancing is included!

happy birthdayThank you all for your birthday wishes.  I like to respond to each of you individually and hope I haven’t missed anyone.  Let me know if I have. It was a lovely day with the kids, and neighbors helping me celebrate, as well as my long distance friends emailing, snail mailing, Facebook inboxing, and texting.  I truly feel cherished by those in my communities.

I also believe I’ve gotten across to the French division of Amazon by writing in English and letting them translate it instead of giving in to my own misguided insistence upon using my fractured French.  Take a look for yourself by going to Amazon’s website, scrolling down to the bottom of the page where the different countries of operation are listed, hitting France, and inputting the title of the book – in English.

I’m tired… time to take a rest.

Until next week,

Keep living your life!

And Now for Something a Little Different

Have you ever taken one of those silly little Facebook quizzes?  I usually don’t, but I did yesterday… and discovered that my mental age is 28.  Well, that explains a lot. The truth of the matter is that I will be 67 on Sunday.

As a younger woman, I lost my birthday to the beginning of the new term in whatever high school I was teaching: five new classes for my birthday. Now I lose it to Super Bowl Sunday.  Although this year, I find I’m losing it to something else too, and I don’t mind that at all.

wsjAfter last week’s Wall Street Journal article (Oh, you haven’t read it yet?  It’s included in last week’s blog), I received a bunch of requests to include information in the blog.  Some were for profit.  Those I immediately discarded.

Some were for public relationships coverage.  I replied I would consider a trade if they would publicize SlowItDown, my project to bring free CKD education by trained educators to any community that needs it. Never heard from them again.

And then there was this one from Cameron Von St. James about LungLeavin’ Day. I thought and thought about it since the .com threw me, but finally decided that there was a reason LungLeavin’ Day is the same day as my birthday and I just happen to write a medically associated blog.  Thank you, Cameron, for sharing this:

http://www.mesothelioma.com/heather/lungleavindaylung

Unfortunately, it was beyond my computer capabilities to reproduce or even copy the contents of the site to the blog.  Do click on it.  It is worth your while.

Of course, you’re probably wondering what this has to do with Chronic Kidney Disease.  Let me explain.

Just as with CKD, early detection of mesothelioma certainly helps in treating it.  Screening the at risk population- those who have been exposed to asbestos – is an important part of detecting the disease, just as with CKD. However, there are reasons to be extra careful about diagnosing mesothelioma in kidney patients.Book Cover

According to PubMed, part of the US National Library of Medicine of The National Institutes of Health,

“Serum mesothelin concentration is elevated in individuals with renal impairment. Renal function should therefore be taken into account during interpretation of this assay.”

You can read more about the September, 2011 study which resulted in this conclusion at: http://www.ncbi.nlm.nih.gov/pubmed/21333373

I wasn’t clear about serum mesothelin so I researched it. MedicineNet.com tells us that mesothelin is “A protein attached to the cell surface that is thought to have a role in cell-adhesion and possibly in cell-to-cell recognition and signalling. Mesothelin is so named because it is made by mesothelial cells. A monoclonal antibody, which recognises mesothelin, binds to the surface of cells from mesotheliomas and some other tumors but not to healthy tissues except for mesothelium.” You can find more, but it is definitely written in medicalese, at: http://www.medterms.com/script/main/art.asp?articlekey=25335.

So serum mesothelin is measured during a blood test.  This tells your physician if you have mesothelioma and, if you do, how far it has progressed.  BUT, if you have kidney disease, your readings for serum mesothelin may be elevated.  What a Catch 22!

A little more on this.  Serum means “The clear yellowish fluid obtained upon separating whole blood into its solid and liquid components after it has been allowed to clot.”  This definition is from The Free Dictionary, which you can find at: http://www.thefreedictionary.com/serum.

mesoYou probably didn’t need that defined, but I wanted you to see where in the blood you would find this indicator of mesothelioma.  Notice that your creatinine measurement is also taken from the serum.

Years ago, seemingly in another lifetime – when I worked in McKee Vocational – Technical High School in Staten Island – one of my colleagues died of kidney failure.  Rumor had it that the asbestos in the building was the cause.  I hadn’t been diagnosed yet and didn’t really understand any of this.  Now I can understand the possible origin of the rumor, but the result is the same:  we lost a wonderful person, Ms. Alice Schmedes.

Let’s get a bit more on the positive side here.  Here’s a blog by Dr. Robert Provenzano from Accountable Kidney Care Collaborative that resulted from the Wall Street Journal Article.

Educating Patients Means Empowering Patients

The Wall Street Journal recently published an article about patients doing more to control chronic conditions. After finishing the article, my immediate thought was I’d like to see more patients like author Gail Rae-Garwood, who is profiled in the article, feel empowered to take charge of their health. Undoubtedly, patients need to muster a great deal of courage to step up and take the lead in managing their chronic kidney disease. And education is the best way for physicians to facilitate that kind of courage.

Educated patients make better clinical choices and are better prepared when treatment is necessary. This is a well-known fact, yet many patients need reinforcement to better understand how to live a longer, healthier, happier life—and that reinforcement can come from you, one of their most trusted resources.

DaVita’s Kidney Smart® program is a great resource for your patients. Through instructor-led classes, Kidney Smart gives people with chronic kidney disease (CKD) who have not yet started dialysis the information they need to make healthy choices and slow the progression of their disease—all at no cost to them. Encourage your patients to enroll in a no-cost Kidney Smart class today.

You can also refer your patients to communities like myDaVita.com. This 133,000-member online community helps CKD patients understand and manage their kidney disease, featuring more than 1,000 kidney-friendly recipes, forum discussions, group support and more.Provenazo

Together, we can be a valuable front-line resource for people living with CKD.

Take a moment to read more of the Wall Street Journal article on patients’ role in managing chronic conditions, and figure out the best way you can support your patients.

An open message to Dr. Provenzano, the Accountable Kidney Care Collaborative, my readers, any member of the medical field, and those who know and love people with CKD:

I invite you to contact me at ckded@cox.net to bring SlowItDown to any and all communities that need it.Kidney Book Cover

Until next week (when I’ll be 67!),

Keep living your life!

Control That Chronic Condition

NKF-logo_Hori_OBThe National Kidney Foundation referred this reporter to me to discuss how I handle my chronic kidney disease.  Once she’d interviewed me, she decided to save the material and quotes I’d given her to use in an article on patient participation in their illnesses.

I have one thing to say to you, Laura Landro:  thank you.  Thank you from the bottom of my heart for making it clear that we CAN slow down the decline of our kidneys.  Thank you from the bottom of my heart for getting that message to so many people in one fell swoop.  And thank you from the bottom of my heart for making certain people know about SlowItDown.

While I added the images for the blog, this is the article as it appeared in the Wall Street Journal last Monday:  wsj

Patients Can Do More to Control Chronic Conditions

In the absence of cures, people can learn how to slow kidney disease, diabetes and other ills

By Laura Landro

By the time Gail Rae-Garwood was diagnosed with chronic kidney disease at age 60, it was already too late for prevention, and there is no cure. But Ms. Rae-Garwood decided she could do something else to preserve her quality of life: slow the progression of the disease.

For the millions of Americans over 50 who have already been diagnosed with chronic ailments like kidney disease, diabetes, heart disease, rheumatoid arthritis and chronic obstructive pulmonary disease, careful management can’t turn back the clock, but it can buy time. It takes adherence to medications, sticking to recommended diet and exercise plans, and getting regular checkups.

As simple as that sounds, experts say, patients often don’t hold up their end of the bargain, and doctors don’t always have the time to help between visits. Chronic ailments may also lead to depression, which itself is associated with poor adherence to medication across a range of chronic illness, according to a 2011 study in the Journal of General Internal Medicine.

“The whole goal in conditions that are lifelong, and aren’t going to go away, is to stabilize them and keep them as stable as possible for as long as possible,” says Edward Wagner, a researcher and founding director at Seattle-based Group Health Research Institute.

Patients’ Role

Dr. Wagner developed a protocol known as the chronic-care model in the 1990s, which has been increasingly adopted by many health-care providers. One of its primary goals, in addition to careful monitoring, is teaching patients self-management skills. “Evidence is mounting that the more engaged and activated patients are in their own care, the better the outcomes,” Dr. Wagner says.

Take kidney disease. One of the fastest-growing chronic conditions world-wide, it affects 26 million Americans, and millions of others are at increased risk, according to the National Kidney Foundation. Over time, the kidneys lose their ability to filter waste and excess fluid from the blood; the condition may be caused by diabetes, high blood pressure and other disorders. But patients may not have symptoms until it is fairly advanced. As dangerous levels of fluid and wastes build up in the body, it can progress to so-called end-stage renal disease, or kidney failure. Without artificial filtering, known as dialysis, or a kidney transplant, the disease can be quickly fatal.

But especially in earlier stages, lifestyle changes that ease the burden on the kidneys can have a marked effect, including eating less salt, drinking less alcohol and keeping blood pressure under control. Doctors may suggest a “renal diet” that includes limiting protein, phosphorous and potassium, because kidneys can lose the ability to filter such products.

Sometimes modest changes can make a difference. Even small amounts of activity such as walking 60 minutes a week might slow the progression of kidney disease, according to a study published last month in the Journal of the American Society of Nephrology.

There are plenty of resources to help kidney patients manage their disease, including the kidney foundation website (kidney.org) and classes offered by the dialysis division of DaVita HealthCare Partners Inc.  The company says it educates about 10,000 patients annually at free “Kidney Smart” classes across the country.

Getting the Word Out                     Book Cover

Ms. Rae-Garwood says she decided to become engaged in her own care and share what she learned with fellow patients, after she was diagnosed in 2008 with Stage 3 kidney disease.

“People need to be educated and learn how to manage it so that they are not immediately on dialysis or on death’s door,” she says.

Ms. Rae-Garwood wrote a 2011 book, “What Is It and How Did I Get It? Early Stage Chronic Kidney Disease,” and started a blog to offer its contents free online. She developed an educational program, kidney-book-coverSlowItDown, which is used by health educators to provide free classes in various communities such as the Salt River Pima-Maricopa Indian Community in Phoenix.

She acknowledges that it isn’t always easy to follow her own advice. “The disease is somewhat in control, but I’m getting older,” Ms. Rae-Garwood says. “And while I can control my renal diet, it’s harder to lose weight, and exercise isn’t always an option since I’ve hurt this or that on my body.” She takes blood-pressure and cholesterol medications, and tries to keep stress levels down.

She retired from both a college teaching post and acting last year but still keeps up a Facebook page, Twitter account and her blog to get the word out. “I’m serious about getting the necessary education to the communities that need it,” she says.

The article was published while I was still in Los Angeles after a Landmark Worldwide weekend.  I had no car, didn’t really know where I was, and had no idea how to get to a newsstand… if those even still exist.  Luckily, my daughter Nima – all the way on the other side of the United States – had gotten a print copy.  She’ll be mailing it to me any day now. (Right, Nima?).

I’m old fashioned enough that even if I’ve printed a copy of the article from the internet, I want to feel the pulp of the paper (if that’s what paper is still made from) in my hands and let it yellow with age in my files.  I am one happy Chronic Kidney Disease advocate these days.

Until next week,

Keep living your life!

Just Breathe

I was in Culver City, California, at a Landmark two day class this past weekend, so this blog was written before I left.  During these weekends, there’s very little free time which means I would have had to spend all Monday morning writing the blog… with a laptop that’s died at least three times already.

Rather than take that chance, I wrote this late Thursday night, since I flew to California on Friday and wouldn’t return until Wednesday. There were relatives to see there and sight-seeing, too.  Sony has a studio with sound stages there (first called Columbia Studio) and, as a recently officially retired actor, I found that too enticing to pass up. There’s a lot more to the studio’s story, but it doesn’t belong in a blog about CKD – unfortunately for me.NIHMS233212.html

Have I ever told you I have sleep apnea?  And that this affects CKD patients? I do and it does. According to http://www.ncbi.nlm.nih.gov/pubmed/20676805, one of the National Institutes of Health’s sites, sleep apnea can raise blood pressure, which in itself is one of the problems of CKD.  It can also result in glomerular hyperfiltration.  The chart above is from their site.  Notice ‘eGFR declines’ is one of the results. These three areas are the most important to us as CKD patients, which doesn’t means the other effects should be ignored.

In order to combat these problems, to say nothing of the rare risk of death due to not breathing, I wear something called a mandibular advancement device (MAD).  I know it sounds like my writing, but I did not make up that acronym.  Honest! The picture is very similar to the one I wear nightly. (I am not promoting that particular brand; it was just the best picture I could find.)mad

I didn’t want a Continuous Positive Airway Pressure machine  or CPAP, as it is commonly called, because I don’t like the idea of being tethered to anything – the same reason I am doing everything in my power NOT to get to the point when I need dialysis.

I didn’t want surgery because of the drugs involved.  I’m down to 48% kidney function, so I’d rather keep anything I haven’t checked previously out of my body. Last time I had surgery, before the operation, I asked for and was given a list of the drugs to be used.  I checked each with my nephrologist, but then – without advance warning – different drugs were used during surgery.

There’s a little more than meets the eye to keeping your oral (mouth) airways open at night. I love that play on words.  Back to serious:  the picture below shows how the MAD forces your airway open by advancing your lower jaw or mandibular.  A really nice by product is that you don’t snore anymore, either.

A dentist who is a sleep apnea specialist needs to monitor your progress.  When I first started, I was having so many episodes of sleep apnea (which means you stop breathing) that it was dangerous.  And here I’d thought I was just a noisy sleeper.

This specialty dentist advanced the metal bars holding the top and bottom of the device together so that my lower jaw was moved further and further forward while I slept and my airway opened more and more. I also used the same rubber bands people who wear braces obstructionuse. I use them to keep my mouth pretty much closed.

While I am out of the danger range, I am still having those episodes  of apnea so I keep driving from my home to Tempe (between an hour and an hour and a half each way depending on the traffic) to have the device checked and adjusted every few months. This specialty dentist, the only one in the Valley of the Sun, then loans me a machine to measure the extent of my sleep apnea and the effectiveness of my MAD.

But that’s not all.  Since the mandibular is forced forward – good to open the airways, not so good for the muscles in the jaw – I also wear a retainer about half an hour after I remove, polish, and rinse the MAD.  This retainer stays in my mouth for about 15 minutes, but I need to physically push the mandibular back in place so that my lower teeth can meet the retainer on my upper teeth.  Result: I can’t talk. (I think Bear really likes this part of the treatment for my Obstructive Sleep Apnea.) Then this has to be brushed and dried, too.

In addition, I use a little machine that looks just like a jewelry cleaning machine in which I place a denture cleaning tablet once a week because there usually is some kind of buildup on the MAD.

This is quite a bit of work (adding to my daily routine of exercise, wearing hand braces at night, putting drops in my poor little macular degeneration suffering eyes… can I get a little sympathy here?), but well worth it.  I am not only saving my life, I’m saving my kidneys… and my heart… and my liver, according to the latest medical discoveries.

The down side?  Well, if I open my mouth while I’m wearing the MAD, I drool. I can hear Bear clapping now: more  silence from me. I could also risk stretching my jaw muscles if I don’t use the morning retainer.  Not using the retainer could result in a small, but permanent, shifting of my teeth as well.  And there is pain when I first take out the MAD.  Maybe I should write discomfort or minimal pain instead. muscles

If you snore, get checked for sleep apnea.  Many people just don’t know they have it and, YES, it could be life threatening.

Did you see today’s (meaning Monday) Wall Street Journal.  In ‘Encore,’ Laura Landro wrote about SlowItDown and me.  I haven’t read it yet, but will be sure to post a link to it on WhatHowEarlyCKD and SlowItDown’s Facebook pages and Twitter accounts.  If you haven’t liked either of the Facebook pages, why not take a look at each of them and do it now?

Again, please be leery of Campusbookrentals.com and Chegg.com which are both attempting to rent What Is It And How Did I Get It? Early Stage Chronic  Kidney Disease for short periods at prices that are higher (for one of them, double) than that of the book.   Make use of the KindleMatchBook deep discount instead.

I’d discovered a place marker as well as the book cover on Amazon’s French site so I wrote them an email requesting they remove the place marker.  They removed both.  I think I’d better brush up on my French.

Until next week,

Keep living your life!Book Cover

Book It!

With the holidays over and more time to think about what I’d like to write, I decided this would be a good time to update you about whatever other books are available that also concern Chronic Kidney Disease.

You know there are many out there, too many to mention here, so I eliminated any book that couldn’t be understood by a lay person (those without specific training in a certain field – in this case, medical) and renal diet books.  You can easily find those for yourself by going to Amazon.com and B&N.com. I also excluded those I found to be dubious… the spelling errors were a dead give-away that these were not professional.

I’m not going to tell you about What Is It And How Did I Get It? Early Stage Chronic Kidney Disease since you already know about it from this blog.  Let’s change that, I will tell you one or two things.  First, the books included in ‘Additional Resources’ (Chapter 13) won’t appear here, as good as they are.Book Cover

And – pay attention – students, be aware that both Campus Book Rentals and Chegg are attempting to rent the book to you for more than it costs to buy it.  The digital edition – when I was teaching college, my students always seemed to prefer the digital edition – is even less expensive.

Don’t forget about The KindleMatchBook program which allows you to buy the digital version at 70% discount if you’ve ever bought the print copy. Gather your classmates: pool your money so you can save. One of you buy the print edition, then the others can get the digital edition at deep discount (I have no idea why, but I love that phrase).

Disclaimer:  I am not a doctor, have never have claimed to be one , AND am not endorsing the following books, simply letting you know they exist. For the most part, the descriptions were written by the author. The ‘Look Inside!’ function only works if you follow the link to Amazon.com – sorry! I have been dreaming about this list, so let’s get it out of my dreams and on the blog:

510smylYevL._SL160_PIsitb-sticker-arrow-dp,TopRight,12,-18_SH30_OU01_AA160_Ford, Mathea A., RD (Registered Dietician) Kidney Disease: Common Labs and Medical Terminology: The Patient’s Perspective (Renal Diet HQ IQ Pre-Dialysis Living) (Volume 4)

New to kidney failure? Have no idea what your physician just said about your kidneys? Kidney disease labs and terminology can quite often be a challenge to understand and digest. Did your doctor use the “stages of kidney disease”? Did you physician refer to “eGFR”? What does all this mean for your health and future with kidney disease, lifestyle and nutrition choices. This book is the basic platform for understanding all the common labs and terminology that your doctors and nurses will use. This book with give you and your caregivers the confidence to manage your condition knowing that you have an understanding of all the ins and outs of the nephrology jargon. (Mrs. Mathea seems to have an entire series of books about CKD.)

Hunt, Walter A. Kidney Disease: A Guide for Living. 

When Hunt learned he had kidney disease, he was overwhelmed by the prospect of facing kidney failure. He had so many questions: Why are my kidneys failing? Is there anything I can do to save them? How will I know when my kidneys have failed? What will it feel like? 41nNk5SdqIL._AA160_What treatments are available for me? Is there a cure for kidney failure? The good news, as Hunt found out, is that kidney failure is highly treatable. People with the disease can lead full and productive lives, and Hunt’s readable and empathetic book will help them do just that. It discusses the latest scientific and medical findings about kidney disease, including what kidneys do; the underlying diseases that cause failure; diagnosis, treatment, and prevention; dietary factors; clinical trials; and the future direction of research on kidney failure. Kidney disease is difficult, but as Hunt’s narrative reveals, people living with it can take control of their health and their future. By understanding kidney failure — what causes it, how it may affect their lives, and what treatment options they have — people with the disease can improve their quality of life and achieve the best possible outcome.

51nUIkG8kSL._AA160_Lewis, Dr. Robert. Understanding Chronic Kidney Disease: A guide for the Non-Specialist.

This is meant for primary care physicians, but can be easily understood by the layman. I looked under the covers of this one and was delighted to see that the information we, as patients with CKD, need to know is also what our primary care physicians need to know. (I wrote this description.)

National Kidney Foundation of Southern California. Living Well With Kidney Disease.

The first edition of “Living Well With Kidney Disease” was developed and published by the National Kidney Foundation of Southern California. Based on the handbook “When Your Kidneys Fail” (originally published in 1982), this new and 41jxZoYLGzL._AA160_updated edition provides detailed information specifically intended for people coping with Kidney Disease and other renal failure, as well as their friends and families. The question and answer format provides a clear and manageable guide for those seeking support and answers. Among the topics covered are the principles of kidney function, methods of treatment, transplantation, and financial resources available to patients. With all of the ramifications of kidney failure and the rise of Chronic Kidney Disease and Type 2 Diabetes, there is a growing population of people afflicted with kidney failure. Although it was written with the patient in mind, family members, friends and health care professionals will also find this handbook a valuable resource.

517GaXFXNPL._SL160_PIsitb-sticker-arrow-dp,TopRight,12,-18_SH30_OU01_AA160_Synder, Rich DO (Doctor of Osteopathic Medicine) What You Must Know About Kidney Disease: A Practical Guide to Using Conventional and Complementary Treatments

The book is divided into three parts. Part One provides an overview of the kidneys’ structure and function, as well as common kidney disorders. It also guides you in asking your doctor questions that will help you better understand both status and prognosis. Part Two examines kidney problems and their conventional treatments. Part Three provides an in depth look at the most effective complementary treatments, from lifestyle changes to alternative healing methods. The diagnosis of kidney disease is the first step of an unexpected journey.

*Yes, this is the same Dr. Rich Snyder who interviewed me on his radio show twice since What Is It And How Did I Get It? Early Stage Chronic Kidney Disease was published.

It’s always hard to find good books about CKD that non-medical personnel can understand.  I hope this four (and mine!) help you feel more comfortable and knowledgeable about your diagnosis.

Here’s a little hint about your own health.  I’m back to no sweets or desserts and, I hate to admit it, but I’m feeling better.  Don’t you just hate when that happens?sugar

Until next week (when I’ll in in Culver City for a weekend of Landmark),

Keep living your life!

Dragon in the New Year

firworksThe New Year is creeping up on us…again. It happens every year and I’m surprised by it every year. This year I decided that instead of looking forward to the New Year to start my new projects as usual, I would end the old year with one of those projects.

By that I mean I’m dictating this blog with the Dragon Dictation Program that Bear got for me last Christmas. It scared me. I think I may be a little technophobic, but I’m finally getting comfortable with it. I tentatively tried it on my phone almost immediately. That worked, so I even more tentatively tried on my iPad almost 6 months later. Now I’m ready for the big time: the computer. And there you have it; I am now blogging with Dragon.dragon-logo

I was trying to figure out what would be a good end-of-the-year topic and kept getting the same vision of a heart. Unusual, I thought, since this is not a feel good blog. In fact, it’s sometimes downright scary. Then I remembered that the heart pumps blood and there needs to be some pressure for that. Of course! The last blog of 2013 would be about blood pressure, a topic that’s been bandied around quite a bit in the medical field lately.

blood pressure 300dpi jpgThe year was new when Jane Brody of the New York Times wrote, “48% of more than 76 million adults with hypertension have it under control up from 29% in 2000.” That sounds terrific, especially since normal blood pressure was considered lower than 120/80 at the time. You can read more about this now outdated information in her still informative article Keeping Blood Pressure in Check at http://well.blogs.ny times.com/2013/01/28/keeping-blood-pressure-in-check.

Why is this outdated information? Good question. Less than two weeks ago the 8th Joint National Committee announced via the Journal of the American medical Association (JAMA), that the guidelines for hypertension (high blood pressure) have changed. Keep in mind that hypertension can lead to cardiovascular problems and kidney failure.

The new acceptable levels are 150 (systolic) over 90 (diastolic) for people over 60. The big news for people with diabetes or kidney disease – like us – who were considered to have hypertension at 130/80 is that it has shifted to 140/90. This means that those of us who depression-cause-heart-attack-1have been taking hypertension medication because we have chronic kidney disease and were trying to stay below 130/80 can now go up to 140/90 without the medication and as high as 150/90 if we’re over 60. Personally, I don’t want to take the chance.

Apparently many doctors agree with me. Dr. Mariell L. Jessop, president of the American Heart Association, says she’s worried about public reaction. As the medical director of the Pennsylvania Heart and Vascular Center, Doctor Jessop said, “I just get anxious when people hear that they don’t need as much medicine and they can allow their blood pressure to drift up.”  You can read more about this at http://www.washingtonpost.com/national/health-science/new-blood-pressure-guidelines-raise-concern-among-heart-health-groups/2013/12/26/eaa6c73e-6e3d-11e3-b405-7e360f7e9fd2_story.html.

But the American Society of Hematology (which means blood) and the international Society of Hematology have their own guidelines.  According to these two groups, the acceptance of 150/90 for older patients should start at age 80, not 60. There also seems to be a difference in the drugs that they recommend. These differences led the ASH/ISH authors to proclaim “Because of the major differences in resources among points of care it is not possible to create a uniform set of guidelines. For this reason we written a broad statement… and we expect that experts who are familiar with local circumstances will feel free to use their own judgment.”  This does not add to my comfort at the thought of allowing my blood pressure to rise. Those of you who are willing to get a little more technical in your reading you can find this article at www. Medscape.com/view article/818080.

So here we have the first new sets of guidelines for acceptable blood pressure numbers since 1997 and they don’t exactly agree with each other. Let’s make matters worse for the layman. It also turns out that your blood pressure can vary as much as 20 degrees during the same day depending upon circumstances, food intake and the timing of that intake, and physical exertion. This actually makes a lot of sense to me.

Take heart (there’s that image again), as confusing as this might be I discovered something that could really be helpful at http://www.eurekalert.org/pub_releases/2013-03/aha-FO P030 413.php. The American Heart Association has a program called Heart360 in which patients send their daily blood pressure numbers to the health providers directly from their home blood pressure machines.  54% of the Heart360 home monitoring group reached their blood pressure goals after only six weeks as opposed to 35% of the group that was treated in the usual way: diagnosed, education about managing high blood pressure, and the importance of diet and exercise. While the first group received the same information, it seems to be the added monitoring that helped more people succeed.

Talking about the heart, many thanks to step-daughter Kelly and her fiancé Sean for hosting our annual Christmas Eve dinner.  More than half the food was CKD friendly, a specific effort on the part of the cooks (Sean, Kelly, and Lara) for which I am extremely grateful. I’m talking steamed green beans in pureed cauliflower, roasted peppers and what tasted like low sodium turnkey.

IMAG0269 (1)Lara’s love came up with the idea of a Secret Santa since we’re up to seven attending this event each year and it was getting pretty pricey for each of us to gift everyone else.  Since my giftee ended up not being able to attend, I was able to give each household a high heeled ceramic shoe which was a wine holder.  Fast thinking on my part, wasn’t it.  And I gave each of the two cats and four dogs in the family presents.  No one said anything about the animals!

I’ve been corresponding with Amazon’s European sites to correct a book image problem and it’s been a hoot!  The funniest was my attempt to communicate with the French site in French.  They ended up working with the wrong book.  My fault entirely.  I switched to English pretty fast.Book Cover

Oh my, this is the last time in 2013 that I get to write:

Until next week,

Keep living your life!

‘Twas The Night Before The Night Before Christmas

Christmas Tree’Twas the night before the night before Christmas and all through the house…. The night before the night before Christmas?  Where did the time go? Hmmmm, there are no children here to constantly remind us Christmas is coming.  We rarely watch television (although we often watch movies), so we didn’t see the ads that could have reminded us.  Oh, I did know it was coming… just not so quickly.

And that’s often the case when we deal with a chronic illness.  We know that doctor’s appointment is coming up and we’re eager to see the results of our blood tests.  After all, we’ve worked so hard on diet, exercise, sleep, and lack of stress (that’s funny: stressing for lack of stress).  We just didn’t know it was coming so quickly. Did we have enough time to lower our blood pressure?  Was it enough time to lose some weight?  Did we monitor our eating enough in this amount of time that our cholesterol numbers are down?  Time, time, time.  It all comes down to time.

I have a modest proposal (apologies there, Mr. Swift).  What if we ignore time and just always – okay, almost always – watch the diet, exercise, sleep enough, and avoid stress.  Oh right, that’s what we’re supposed to be doing: lifestyle changes.NAFLD

According to an article published in the European Journal of Social Psychology way back in September of 2009, it takes an average of 66 days to form a new habit. The article was written by Phillippa Lally and her colleagues from the Cancer Research UK Health Behaviour Research Centre based at UCL Epidemiology and Public Health, and was based on their research.  You can find more at: http://www.ucl.ac.uk/news/news-articles/0908/09080401

Since it’s habits that form your life style, I had trouble accepting that number so I kept researching.  Ugh, I kept coming up with the same number although one analysis of this same article did mention that it can take as few as 18 or as many as 254 days to form a habit depending upon the individual.  I’ll take the 18 days option, please.

All right, let’s try something else.  How about getting enough sleep.  How much sleep is enough sleep anyway?  According to Dr. Timothy Morgenthaler on the Mayo Clinic site (http://www.mayoclinic.com/health/how-many-hours-of-sleep-are-enough/AN01487), seven to eight hours is what an adult needs, but then he lists mitigating circumstances under which you might need more:

  • Pregnancy.      Changes in a woman’s body during early pregnancy can increase the need for      sleep.
  • Aging.      Older adults need about the same amount of sleep as younger adults. As you      get older, however, your sleeping patterns might change. Older adults tend      to sleep more lightly and for shorter time spans than do younger adults.      This might create a need for spending more time in bed to get enough      sleep, or a tendency toward daytime napping.
  • Previous      sleep deprivation. If you’re sleep deprived, the amount of sleep you      need increases.
  • Sleep      quality. If your sleep is frequently interrupted or cut short, you’re      not getting quality sleep. The quality of your sleep is just as important      as the quantity.

Victorian clockThose first two weeks after Bear’s surgery when I was his caretaker, I rarely enjoyed more than two hours of sleep at a time and there seemed to be no difference between day and night.  I’m not saying this would be true for everyone, but we paid for it dearly.  I ended up in the emergency room needing a breathing treatment to relieve the bronchial symptoms that were making it so difficult to breathe and I just may have brought home a virus for Bear who soon started running a high fever. We were both run down from lack of sleep.  Of course, Bear was already in recuperative mode, but we proved to me how very important sleep is.

When I was first diagnosed with Chronic Kidney Disease almost six years ago, the value of exercise was brought home again and again by my nephrologist.  Until I researched for What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, I wasn’t clear about why this was important.  This is what I discovered:

I knew exercise was important to control my weight.  It would also improve my blood pressure and lower my cholesterol and triglyceride levels. The greater your triglycerides, the greater the risk of increasing your creatinine.  There were other benefits, too, although you didn’t have to have CKD to enjoy them: better sleep, and improved muscle function and strength. But, as with everything else you do that might impinge upon your health, check with your doctor before you start exercising.

I researched, researched and researched again.  Each explanation of what exercise does for the body was more complicated than the last one I read.  Keeping it simple, basically, there’s a compound released by voluntary muscle contraction.  It tells the body to repair itself and grow stronger. The idea is to start exercising slowly and then intensity your activity.exercising silhouette

Okay, so we know during that 66 days to form a habit, seven to eight hours a night of sleep is one of the habits we should be forming and half an hour of exercise daily is another.  Might as well throw in following the renal diet and avoiding stress as two other habits to get into.  However, considering how long this blog is already, those are topics for another blog.  Who knows?  Maybe even next week’s blog.

KindleAmazon is offering the book in many different countries as well as ours.  It’s also offering the Kindle MatchBook in each of these countries.  Remember?  That’s the program that allows you to buy the digital edition at a 70% discount if you’ve EVER bought a print copy of the book from them.  Why mention it yet again?  It just occurred to me that you can gift the newly diagnosed, their friends and/or family in many different countries! And for those who asked, yes, the book is available on B&N.com, but their digital reader is The Nook, not the Kindle, so there’s no MatchBook discount program on this site.

May you have a Merry Christmas and a Happy Kwanzaa if those are the holidays you celebrate.  Oh my!  Just one more 2013 blog. I think I’ll go back to the earliest ones from this year to see how varied they are.  I’ll bet there’s more than one about the health benefits of coffee.Book signing

By the way, there has been some controversy about the authorship of the poem from which I played upon for the title of this blog, but I’m more than willing to accept Clement Moore as the author of “ ‘Twas The Night Before Christmas.”

Until next year,

Keep living your life!

SlowItDown More

KwanzaaThe best way I can describe the way I think of this holiday season – Thanksgiving, Chanukah, Christmas, and Kwanzaa – is that it’s a reminder to share, to give, to donate… and that’s why this is another blog about SlowItDown.  Not all who read this blog have Chronic Kidney Disease (thank goodness), but most of you know someone who does, or know someone who knows someone who does, and so forth.  Some of you are doctors, work with doctors, or are patients of doctors. Share SlowItDown with them. Let’s see how many people we can educate about their own disease.  It gave me solace to learn just what was going on in my body and what I could do to help myself.  My hope is it will offer them the same.Christmas Tree KidneySteps.com is another kidney site.  Vicki Hulett, one of the authors of The Five Step Survival Guide for Diabetes, High Blood Pressure, and Dialysis, a kidney transplantee, and the administrator of the site was glad to help spread the word when I first instituted the SlowItDown project and offered to print an article about it if I’d like to write one.  Oh boy, did I! And here it is: I am part of an at risk community for Chronic Kidney Disease.  I’m over 60, not Black, not Hispanic, not Native American, just over 60. That’s enough to make me part of an at risk community. To make matters worse, 59% of the United States’ population is at risk for Chronic Kidney Disease… whether they are part of a high risk community or not. MenorahWhen I was first diagnosed, I was confused.  What is this?  How did I get this disease? I’d never heard of it before.  I contacted relatives near and far; no one had ever heard of this in the family before. I was scared, too.  Did this mean I was going to die? I couldn’t understand what my nephrologist was saying.  Nothing was getting in so I couldn’t respond to his, “Do you have any questions?” I went home and kept this a secret while I quietly mourned what I thought was my impending death. But not for long.  I’m a non-fiction writer and that means I can research.  So I did. ThanksgivingThen I wrote What Is It And How Did I Get It? Early Stage Chronic Kidney Disease. You can see where I got the title.  I started doing book signings and book talks, then radio shows and I finally figured out a Facebook page and a Twitter account for the book would help disseminate the information. But it just wasn’t enough to get the information I’d needed out to the people who needed it now: the newly diagnosed. That’s when I began SlowItDown, a project to bring free Chronic Kidney Disease education by trained instructors to any community that needs it.  We were invited to the Salt River Pima – Maricopa’s Annual Men and Women’s Gathering and will be in the community once a month for ten months offering this education.  Both the Chinese Christian Community and the Burmese Community have asked us to present. I’d like to see SlowItDown in every community that needs it.  Let us know via our Facebook page which communities you’d like to see us help and I’ll contact them. If you know me at all, you know I didn’t stop there.  After the Salt River Pima – Maricopa Indian Community invited us to teach there, SlowItDown presented at their 4th Annual Men and Women’s Gathering.  There were members of several different tribes there who took the education back to their communities.  I donated books to a member of each of the tribes so they would have a reference right there in their hands when they went home again.Salt River Great Seal I’m still not done.  Right after the new year, there will be an ‘Encore’ article about SlowItDown in The Wall Street Journal.  More about that when I have the specific date.  I’ll be interviewed at onlinewithandrea, a web radio show, about SlowItDown in the early part of next year too.  Again, more about that when I have the specific date. The National Kidney Foundation calls upon me every so often to give interviews or write articles and, each time, SlowItDown is right there in the middle of it. kidney-book-coverSlowItDown is not only the name of the project; it’s the central idea behind the project… and the book. I urge you to take a minute and consider who knows someone, who knows someone else, who knows a third person who just might need to know that CKD is not necessarily a death sentence and that they can slow it down.  That’s the person who needs SlowItDown… and that person just might want to bring SlowItDown to their community. There’s still time (Look at me!  I’m a late night television commercial!!!) to gift someone who could use it with What Is It And How Did I Get It? Early Stage Chronic Kidney Disease for the holidays.  Keep in mind that if you have EVER ordered the print copy of the book on Amazon.com, you get the digital copy at 70% off.  Who knows?  The book may persuade the specific community you’ve got in mind to go ahead and call me (623-266-2609) or contact me via the Facebook page or Twitter to arrange for those KidneySmart classes – taught by DaVita’s own Annette Folmer – to be brought to their community by SlowItDown. On the home front, I’m happy to report that no one has bronchitis, a viral infection, or the flu, and that Bear is healing nicely and can even try walking in just four more days.  Oh, happy day!  What makes this even better is that Lara and her sweetheart hosted everyone for Thanksgiving and that Sean and Kelly will be hosting the whole family for Christmas.  All I hosted this holiday season was a small neighborhood Chanukah party.  I was having such a good time at that I almost forgot about the latkes.  Good friends, good neighbors, wonderful family, and we almost have our health back.  Now I ask you, what more do we need? Until next week, Keep living your life!Book Cover

SlowItDown

I’m so involved with kidney projects that sometimes I forget other people – like readers – are not necessarily on the same page with me (like that writers’ turn of phrase?).  Luckily, people are not afraid to ask me what I’m talking about… and that’s exactly why this week’s blog is about SlowItDown.

Let’s start with the press release; that should introduce the project well:

 SlowItDown                                          CKDed@cox.net                                                            602-509-4965

kidney-book-cover

Chronic Kidney Disease is on the rise.  One of nine people in the mainstream has it and may not even know.  Blacks, Hispanics, Asians, and Native Americans have a much higher incidence of the disease in their communities. This disease cannot be cured, but it can be slowed down if you’re educated to do so.

SlowItDown is the product of a project created by Gail Rae-Garwood when she participated in a Landmark Worldwide leadership program. Landmark is a training and development company known for their flagship course The Landmark Forum (www.landmarkworldwide.com).

The project provides trained Chronic Kidney Disease educators from KidneySmart on a monthly basis at no cost to any community that needs it within the United States.  All the educators need is a place to hold their classes and permission to do so.  This is a self-sustaining program designed to reach the largest number of communities possible.

Ms. Rae-Garwood said, “I am also a Chronic Kidney Disease patient who just happens to be a non-fiction writer.  I’ve written a book (What Is It and How Did I Get It? Early Stage Chronic Kidney Disease available at Amazon.com and B&N.com) so Chronic Kidney Disease patients can see how to manage their disease. I have a Facebook page, twitter account, and blog of the same name to disseminate information, but these still aren’t enough. Chronic Kidney Disease is serious… and I’m serious about getting the necessary education to the communities that need it. “

I may have mentioned a time or two that SlowItDown is now educating in the Salt River Pima – Maricopa Indian Community right here in Arizona.  We are also working with both the Burmese and Chinese communities locally in an effort to bringing the class to them.  An upcoming Wall Street Journal article about activists for their illnesses will include SlowItDown (and me!).  We’re getting the word out there, just too slowly for my taste.  Notice the address and phone number on the press release if you’d like SlowItDown to bring this education to your community or another you know needs the information.Salt River Great Seal

The following is SlowItDown’s proposal:

Chronic Kidney Disease is increasing at amazing speed. All aspects of the population are being diagnosed with this disease. Almost 59% of the U.S.A.’s population is expected to have it soon.

While Chronic Kidney Disease is not curable, the progress of the decline in kidney function caused by this disease can be slowed down.  But people need to be educated that this disease exists, how to be screened for it and then how to manage it so that they are not immediately on dialysis or at death’s door.  People can live for decades with Chronic Kidney Disease if they know how to manage it.

SlowItDown can provide trained Chronic Kidney Disease educators on a monthly basis at no cost.  All the educators need is a place to hold their classes and permission to do so.  This is a self-sustaining program designed to reach the largest number of people possible.

The educators will teach the basics, such as: what Chronic Kidney Disease is, how you get it, what the screening process is and – most importantly – how you slow down the progress of the disease via diet, medication, exercise, and weight control.

I am also a Chronic Kidney Disease patient who just happens to be a non-fiction writer.  I can easily mail you a copy of my book so you can see for yourself how Chronic Kidney Disease patients can manage their disease.  I have a Facebook page, twitter account, and blog of the same name (What Is It And How Did I Get It? Early Stage Chronic Kidney Disease) to disseminate information, but these aren’t enough.

Chronic Kidney Disease is serious… and I’m serious about getting the necessary education to everyone who needs it.  SlowItDown now has its own Facebook and Twitter accounts, too.

We’re presently educating in the Salt River Pima – Maricopa Indian Community. With both the local Chinese and Burmese communities getting ready for this education.  You don’t have to be a member of a high risk group for this free education.  Although, sometimes all you have to do to be a member of a high risk community is be over 60 … like me.

Notice there’s even more information in it.  It’s beginning to make sense to me to reprint here  – in the blog – articles I’ve written about CKD.  I notice that each one has a little more or different information.  Keep checking SlowItDown and What Is It And How Did I Get It? Early Stage Chronic Kidney Disease’s Twitter and Facebook pages for tidbits about our disease and other interesting medical information that just might pertain to us.

Book CoverTalking (okay, writing) about the book, I just realized it’s for sale in the United Kingdom, Australia, Brazil, Canada, China, France, Germany, India, Italy, Japan, Mexico, and Spain.  Thank you, Amazon.com!

It’s the holiday season.  What better time to talk (I know, I know: write) about Amazon’s Kindle MatchBook program, not that you haven’t read it here before.  Here’s the part I like – if you have EVER bought a copy of the print book, you are eligible to buy the digital book at 70% off.  Gift a newly diagnosed patient or his/her family and friends with knowledge about this disease.  I know that’s what helped me cope during that panicky time when it was all so new to me.

Personally, we have a lot to be thankful for.  Bear’s cast is off after six weeks as of this morning, neither he nor I have any lingering effects of the bronchitis for me/viral infection for him, our children are all healthy, our two almost son-in-laws are exactly who we would have chosen had we any say in the matter (Hah!), and we are looking forward to when he (Bear) can walk again.

I intend to have a banner week!  Join me?

Until next week,

Keep living your life!

And (S)He’s Safeeeeeeeeeeeeee

Having had no medical emergencies this past week (thank heavens!), I was casting around for this week’s topic when my dentist reminded me that I need to keep whitening my other teeth for at least another week so they somewhat match the new upper front six tooth sparkling teethbridge.

Whiteners… how do they affect the kidneys if they do at all?   Should I use over the counter products?  A kit I purchase from the dentist?  An in-the-chair dental bleaching?

These are the kinds of questions I keep asking, for deodorant, toothpaste, makeup, even waxing.  Boy, have I ever covered a lot of ground in this area in the last couple of years.  But, as usual, it’s still not enough.  I’ve been playing around with the idea of a newsletter based on what’s safe and what’s not as far as personal products and medical treatments.

smelly armpitsI’ve already written about deodorants and toothpaste.  What a response, especially to the deodorant blog! Most of my readers are not direct email, but read the blog via Facebook and that’s where the lively discussions take place.

Here’s another example.  When I wrote about macular degeneration, I mentioned that my ophthalmologist offered his own designer vitamin that had a 25% chance of slowing down the sight loss involved in this disease.  Once I eliminated the vitamins in the compound that were for preventing cataracts (I’ve already had those removed from both eyes), I was still left with a bunch that might work and a doctor who didn’t know what they would do – if anything – to my kidneys.  I researched them one by one and discovered that only two would be safe for CKD patients.

Now, I don’t mean to whine (Wine? Does that affect the kidneys?), but this is a lot of work for each new product you want to use.  Sometimes even our nephrologists can’t tell us because the product is so new.  I’ve gone to the pharmacist with new products many times and, if they weren’t too busy, they would call the company that made the product immediately.  A call from a pharmacist seems to take precedence over a call from a consumer when it comes to inquiries.

I looked at the ingredients at the dental bleaching product I’d purchased and realized I would have to research them one by one.  The dentist wasn’t sure.  The nephrologist was out of town and I didn’t feel this necessitated a call from his covering doctor.  The pharmacy was very, very busy. (We don’t exactly have winter in Arizona, but we do have flu and cold season).

There are nine ingredients in the dental bleach product I chose.  One is water, so I didn’t research that.  I am not a doctor, never claimed to be one, and repeatedly reminded people that I am not one.  Apparently, my computer hasn’t gotten the message.  But, while I am not a doctor, I’m a terrific researcher.

warningHowever, in this case, I could not understand even one of the articles I found about the eight ingredients I didn’t know about.  This was extremely frustrating. So, I did what I probably should have done in the first place: I called the company.  They looked at the product information and assured me the product had no effect on the kidneys at all, but if I wasn’t comfortable with that, to contact my local pharmacist and/or my doctor.  I was willing to take their word for it (but I will call both the pharmacist and my nephrologist anyway.  Just to be sure, you understand).

Ah, the problems of being a chronic kidney disease patient… and we thought it was all about our doctors’ appointments, diets, sleep, stress levels, and exercise!

On the book front, yet another reminder for you that if you EVER bought a print copy of What Is It And How Did I Get It? Early Stage Chronic Kidney Disease at any price from Amazon.com, you are now eligible for an electronic copy for $2.99.  That is a 70% savings over Book Coverthe usual price of $9.95 for the digital book.  And, yes, I did do that on purpose so that more people will have access to the information they need if they, a loved one, a colleague, or anyone they know and care about has Chronic Kidney Disease.  I can’t take credit for coming up with this Kindle MatchBook program just in time for your holiday shopping, however.  The accolades for that belong solely to Amazon.

SlowItDown is constantly on the lookout for new communities to bring our free Chronic Kidney Disease education taught by trained educators.  If you’re Black, you’re part of a high risk community.  If you’re Hispanic, you’re part of a high risk community.  Heck, if you’re over 60, you’re part of a high risk community!  Gather your friends and family and let’s get SlowItDown over to you so you can all rest a little bit easier by having an understanding of just what your disease means to you and your community.kidney-book-cover

Many, many thanks to Alex Gilman who was our host for Thanksgiving this year.  He made sure the turkey was cooked in a way that I could eat it and was extremely understanding when I forewent certain of the side dishes and of the small portions I chose.

We’ve got to remember it’s not easy for those who have no knowledge of Chronic Kidney Disease to understand why we eat the way we do.  I cannot even count the number of people who were downright insulted that I would do no more than taste what they’d made because the ingredients were not on the renal diet… and that’s after I’ve explained the renal diet!

MenorahTo those who celebrate, I hope you’re enjoying Chanukah.  Kwanzaa, a week-long celebration, won’t start until the day after Christmas, December 26.  I found this informative website for those of you who see me keep mentioning Kwanzaa, but really aren’t sure what it is: http://www.altiusdirectory.com/Society/kwanzaa-festival.php.  As you gear up for these two holidays or enjoy the last three days of Chanukah, consider helping out those with CKD via the book or contacting SlowItDown (ckded@cox.net) for them.

Until next week,

Keep living your life!

Down in the Mouth

With all that’s going on here, I managed to add insult to injury… all by myself.  While trying to open the new jar of honey so I could sweeten Bear’s tea, I broke my tooth.  Don’t ask how; it’s too embarrassing to explain.  At any rate, I was sleep deprived, still recovering from that terrible bronchitis and all I could think was, “Why didn’t that hurt?  I’m standing here with a piece my tooth in my hand and it doesn’t hurt.”

It took a few minutes for me to focus. That’s when I realized it was a not my real tooth; it was the plastic replacement for one of my two front teeth.  I don’t know if you can describe breaking your tooth as lucky, but this one was for me – no pain.  I contemplated not having it fixed since it didn’t look that bad. Ah, but I could hear the lisp when I spoke.  I’d spent quite a bit of time in speech therapy when I was a youngster to lose the lisp and I didn’t want it back again.

Hmmmm, I’ve been trying to figure out how to whiten my teeth.  I was fine with my tooth color until whitening became possible.  People looked wonderful and really healthy with white teeth.  I wanted white teeth, too, until I heard how much that would cost me.  For vanity?  No way, but now that it’s a necessity….dentist

I asked my dentist, Dr. William C. Kaus of Bellaire Smiles here in Glendale, Arizona, if I could get a lighter replacement bridge. I figured that since the bridge covered six of my top front teeth, the ones you see when someone smiles, it might be worth a shot.  He agreed, so we’ll go for the brightest available for the temporary bridge and see if the permanent bridge needs to be a darker hue.  I find myself excited about this.

Here’s what it has to do with Chronic Kidney Disease.  I always urge you to speak to your doctor, every kind of doctor you have.  That includes your dentist.  I told him about my fear of pain in my mouth, the fear I’ve had since I opened a car door into my mouth at age 19.

That’s what caused the need for the root canals in my two front teeth and the need to file them down, way down.  I’d forgotten how very long they had been.  I was warned the teeth might darken and flake in 20 years or so, but 20 years is a long time to a 19 year old.

They lasted longer than 20 years, but did eventually fall apart.  That’s when they were extracted and the bridge with the two new front teeth and anchors for two teeth on either side was inserted.  That’s probably a quarter of your mouth.  Let’s see you have 32 teeth and I had four wisdom teeth extracted which means 28 minus the one that… well, you get the point.

I asked for nitrous oxide, even though replacing a bridge is not a painful procedure. According to Medscape at: http://emedicine.medscape.com/article/1413427-overview, nitrous oxide – commonly called laughing gas or sleeping gas – goes nowhere near the kidneys.  I remember researching when I first was diagnosed with CKD and calling my nephrologist to make certain it’s safe.  (Confession: I am a dental coward since that car accident.)  It is inhaled, goes into the lungs, and then is exhaled via respiration (breathing).  It doesn’t go anywhere near the kidneys.laughing gas

Dr. Kaus recognized that my fear was very real for me, assured me that nitrous oxide – which is combined with oxygen before you inhale it, by the way – would not be a problem and very gently asked me if I’d like something a bit stronger, say, valium.

Everyone’s heard of valium, but I didn’t know much about it and preferred not to take it.  When I was in the throes of bronchitis (was that only last week?), the ER doctor wanted me to take cough syrup with codeine in it, but I’m really, really sensitive to drugs and knew that was going to knock me out.  I didn’t see the point and politely declined that, too.  I’m not good with drugs.

So, valium.  Can and do CKD patients use this drug?    I found this warning at http://www.pdrhealth.com/drugs/valium  (Physicians’ Desk Reference):

“Use Valium with caution if you have any type of kidney or liver problems.”

There was nothing about WHY you need to be cautious in your use of valium.  I spent an hour or so more researching, but all I can find were admonition after admonition to tell your doctor if you have kidney disease and repeated mention that the dosage of the drug valiumhas to be accommodated to your degree of kidney function.  But that’s true of any drug you take.  The lack of specific information for non-medical people about valium only re-enforced my decision not to take the drug.

I am thrilled to remind you that, just in time for Chanukah, Amazon.com has included What Is It And How Did I Get It? Early Stage Chronic Kidney Disease in their Kindle MatchBook  program. That allows you to buy the Kindle edition of the book for $2.99 instead Book Coverof its regular price of $9.95 if you have EVER bought the print copy of the book from Amazon.  Happy Chanukah.

I am actively looking for ways to make the book an affordable gift for Kwanza and Christmas, but think this program is going to be it.  I like how much more accessible it makes the book to those who may need it but weren’t in a position to pay the regular price.

I spent the weekend at a Landmark class where I usually meet the most interesting people.  This weekend was no exception. I discovered that one of my classmates has a nonprofit to offer help to chronic disease sufferers and another is a Doctor of Oriental Medicine.  Both now have copies of the book to share with their patients back in Denver.

Until next week,

Keep living your life!

Easy, Peasy Cryosurgery

This is the feel good blog, the one to reassure you about a medical procedure.  I have a friend who worries that my blogs scare people… and maybe they do, but they’re meant to be informational – just informational.  Except this one.  This one is definitely meant to be reassuring.happy-woman

With all the medical messes, we’ve had lately (she writes as her chest burns and a headache creeps in) the solution to this one was the safest and quickest. The procedure to correct it is non-invasive, doesn’t enter the body in any way, and – therefore – is totally safe for Chronic Kidney Disease patients.

I know, I know, slow down.  Okay, from the beginning:

Skin cancer is responsible for almost half the cancer cases. According to the American Cancer Society’s “Skin Cancer Facts,” it is expected there will be 76,600 cases of melanoma this year alone. Melanoma, the most dangerous of the skin cancers, has made its unwelcome appearance in my family, so every year – well, it’ll be every six months after this episode – I submit to a full body scan by Dr. Christle J. Layton of Affiliated Dermatology right here in Glendale, Arizona. I say submit because I’m an old fashioned prude these days.  However, she does manage to put me at ease each time.

During this last exam, Dr. Layton found something on my forehead… but it wasn’t cancerous, just precancerous.  That, of course, was enough to get me researching.  Here’s where I insert the usual disclaimer: I am not a doctor, folks, just someone with CKD who doesn’t want to make her kidneys function even less effectively because she unwittingly had some medical procedure she shouldn’t have.

IMG_4813What Dr. Layton found is called actinic keratosis.  This is also called solar keratosis and senile keratosis.  I immediately latched on to the last name for this kind of precancer.  According to http://www.healthy-skincare.com/senile-keratosis.html, “Senile keratosis is essentially a form of solar or actinic keratosis. However, the difference is that the senile form of this skin condition specifically refers to the elderly. Generally, this form of keratoses appears in individuals who are older than 50.”  That’s the second time in one week this 66 year old has been referred to as elderly.  Oh right, don’t get side tracked.

Then I checked solar keratosis and found the following at http://solar-keratosis.com/, an Australian site. “Solar Keratosis (Actinic keratosis) is a common premalignant skin lesion seen on areas of the body that have been exposed to sun. Premalignant means that the lesions have the potential to become skin cancer.”

So, solar, senile and actinic keratosis are the same precancerous condition.  One thing that disturbed me about the information is that while I am light skinned-  and so – prone to this type of precancer, it was on my forehead.  Those of you who know me also know that I always have curls tumbling down across my forehead, including the affected area.  This means it wasn’t exposed to the sun and I avoid the sun at all costs anyway.  This IS Arizona.

I was puzzled and dug further. MedicineNet at http://www.medicinenet.com/actinic_keratosis/page2.htm must have been listening to me.  This is what I found there: new headshot

When patients are diagnosed with this condition, they often say, “But I never go out in the sun!” The explanation is that it takes many years or even decades for these keratoses to develop. Typically, the predisposing sun exposure may have occurred many years ago. Short periods of sun exposure do not generally either produce AKs or transform them into skin cancers.

I do remember being talked into (I didn’t develop this strong personality until later in life) using aluminum foil to make a sun reflector so I could tan as a teen ager.  I was so fair that it never worked.  Come to think of it, no one really knew about the ultraviolet rays of the sun/skin cancer connection at that time.  Did they?

Ready to find out about this painless, quick, non-kidney threatening treatment?  It was cryosurgery, which I’ve discussed before.  The simplest definition is the one I found at WebMD: “Cryosurgery is the process of destroying a skin cancer (lesion) by freezing it with liquid nitrogen. Liquid nitrogen is applied to the lesion using a cotton applicator stick or an aerosol spray.” You can find more information about this at http://www.webmd.com/cancer/cryosurgery-for-nonmelanoma-skin-cancer.

When Dr. Layton was done spraying the area, I asked her what was next.  She started telling me I need to clean the area with soap and water, then pat it dry.  I thought that was an odd answer and asked again.  We both realized at the same time that there was no ‘next’ for this procedure.  It was done.cryosurgery

Sometimes, there’s a blister after the procedure.  If so, I was to use an antibiotic ointment and perhaps a band-aid over the area until the blister dries. I may have a scar.  Good, maybe it’ll balance out all the scars on my arms (carpal tunnel surgery, a crazy very big dog we had, bad attempts at food prep and ironing, etc.).  It may also remain white.  Who cares?  It is under my curls, as I’ve mentioned.

I never experienced the burning sensation or pain that others might in the first 24 hours.  It, well, spidey tingled. Whoops!  I think I’m aging myself again.

I am relieved and gratified that this was so simple.  I’m also gratified that European sales of the book are doing so well.  Please spread the word that if you have EVER bought a print copy of the book on Amazon, you can now buy the digital edition for only $2.99 instead of the regular $9.95.Book Cover

I have been sick for ever, or maybe it’s more like 10 days, and have had to cancel attending numerous events (like SlowItDown’s kidney education class on the Salt River Pima – Maricopa Indian Community,  some Landmark events and classes,  appointments with friends).  The world didn’t end.  Lesson learned: rest when you need to; the world will be waiting when you get back.  Thank you to our children and neighbors for coming to our rescue when we just couldn’t do for ourselves, to the EMTs when Bear’s fever was out of control, and to those who kept my spirit up via texts and Facebook posts.  It got us through!

Has anyone ever read an advice column called Dear Annie?

Until next week,

Keep living your life!