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!

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