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!

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