World Kidney Day Is Only Six Years Old

Each Monday, I find it progressively more difficult to choose a topic.  I am amazed at how much information is being disseminated about kidney disease and its treatment and/or underlying causes these days.  Since March 8 is the sixth World Kidney Day, I thought we would go back to the basics to start today’s blog.  Thank you, again and again and again to The National Kidney Foundation for all the information they make available to us.  This is their World Kidney Day posting:

Top 10 Reasons to Love Your Kidneys

Sometimes the more you know, the more you love.  The National Kidney Foundation urges Americans to get to know two humble, hardworking organs: the kidneys.  To help raise awareness and appreciation for all the vital functions the kidneys perform, the National Kidney Foundation offers 10 reasons for Americans to love their kidneys and take steps now to preserve kidney health:

1. Filter 200 liters of blood a day, removing two liters of toxins, wastes and water

2. Regulate the body’s water balance

3. Regulate blood pressure by controlling fluid levels and making the hormone that causes blood vessels to constrict

4. Support healthy bones and tissues by producing the active form of vitamin D

5. Produce the hormone that stimulates bone marrow to manufacture red blood cells

6. Keep blood minerals in balance

7. Keep electrolytes in balance

8. Regulate blood acid levels

9. Remove drugs from the blood

10. Retrieve essential nutrients so that the body can reabsorb them

In my book, I discuss how important it is to tell every doctor you see about your Chronic Kidney Disease.  Notice #9. “Remove drugs from the blood.”  You may need to take a lower dosage of whatever drug was prescribed or, perhaps, take it less often.  If your kidneys are not fully functioning, the drugs are not effectively being removed from your blood.  It would be similar to willfully taking a drug overdose if you do not make your doctors aware of your CKD when they prescribe for you.  Make sure your pharmacist knows about your CKD, too.  You cannot rely on your doctors – specialists or not – to remember every warning on every label.  That’s where your pharmacist comes in.  He or she has that same information.  You are ultimately the one in charge of your health.  It makes perfect sense to draw upon all your resources.

I also discuss in my book the problem in my local hospital’s emergency room when I had a bladder infection.  Just in case you don’t remember, my primary care doctor wasn’t available, so her M.A. told me to go to an Urgent Care facility rather than wait since I have CKD.  When I arrived and told the receptionist I have CKD, she immediately sent me to the hospital emergency room in case I needed blood or other tests for which the Urgent Care wasn’t equipped.  After a battery of tests in the emergency room, sulphur drugs were prescribed, although I’d took them repeatedly about having CKD.  Sulphur drugs can harm the kidneys even more.

This got me to thinking about if I were brought into the e.r. under true emergencies conditions – as in unconscious.  How would they know I had CKD before they located someone who could tell them about my medical background?  Or access my records elsewhere? I knew the answer was a medical alert bracelet, but spent quite a bit of time ignoring the issue.  Then I got sick again – a simple flu – but the bracelet idea popped back into my mind full blown, so I started searching for one.

I wanted something that looked like jewelry, but not too much like jewelry because I have simple tastes.  So, I did what I do best: researched.  This is what I came up with:

I chose the black plate and had “Chronic Kidney Disease” inscribed on two lines on the back.  Now, the bracelet itself:

It’s jewelry like, something I’m comfortable wearing and it does the job of making me feel secure should I ever have a true emergency.  I’ll be adding  http://www.medicalidfashions.com/ to the blog roll later on.  They are one of several sites with the type of medical alert i.d. bracelet I’ve been discussing.  Feel free to click through now or wait for the address to be added to the blog roll.  You know, don’t you, that I have nothing to do with any of the companies I mention to you except that I want to share what I’ve found.

Ah, talking about sharing!  I found this review of the book on Amazon and walked on air for the rest of the day!

The Best Info on Kidney Disease around!, February 20, 2012

By DaylillyGal

This review is from: What Is It And How Did I Get It? Early Stage Chronic Kidney Disease (Kindle Edition)

This is an incredibly well-researched, well-written book written by a woman who herself developed kidney disease. Her book provides clear and comprehensive information for all about the care patients need to have, and responds to the fears and concerns of all involved with coping with kidney disease. It is an honest, very personal accounting of her experience, and I found it to be written clearly, providing tons of pertinent information about every facet of how to cope with this illness. I think Ms. Rae wrote this book for the ordinary person who learns that they will be living with kidney disease from the moment of diagnosis, on. But after reading, I believe that it is also a book that every family member, every friend of someone who has developed kidney disease ought to read as well, in order to better understand what their loved ones are going through. I also believe that this book will benefit every professional in the medical community who deals with patients coping with Kidney Disease. It has helped me, and will help everyone involved with the patient on any level to be better able to understand their patient’s concerns, anxieties, needs and limitations. For these reasons I think it is a great guide for the medical community as well as for the patient/family/friends, as it can help professionals understand the kind of information their patients need to have in order to take good care of themselves. Don’t pass this book up!

Got to go check out a symposium that sent me an invitation to exhibit.  This is a new one for me.

Until next week,

Keep living your life!

 

 

So That’s What It Means

I have spent almost four years researching, reading, printing, and then promptly forgetting about phosphorous.  I keep writing about the three Ps and salt and ending up having to remind myself what phosphorous is and why we need to limit our intake of it each time I write about it.  I was comfortable with protein and easily remembered what I learned about potassium, but phosphorous?  This one just plain eluded me.

I keep a log of interesting articles I run across just in case there’s a Monday that I can’t think of anything special.  That’s what I thought today was going to be.  I tried to start the blog with something about the downright beautiful Arabians we saw at the Arabian Horse Show on Saturday and couldn’t figure out where to go with that.  Then I thought I’d write something about being sick with the flu if you’re a CKDer, but worked on that one on the Facebook page. Maybe something about the wood shop being constructed in my garage?  Naw.  What does that have to do with CKD?

Before I looked over my backlog of articles, I took a quick peek at Twitter.  Bingo.  Seems that my backlog will just have to stay my backlog until the second part of this blog.  An article from Food Navigator.com caught my eye.  I understand it and it feels like I’ll remember it.  Sometimes it just works like that.  So here is the mystery of phosphorous in our daily lives solved.  The article is copy right protected so I can only give you the link, but I’d urge you to read it:

http://www.foodnavigator.com/Science-Nutrition/Phosphate-in-food-is-health-risk-that-should-be-labelled-claim-researchers

As I was scurrying around making dinner yesterday, my mind consumed with phosphorous, I noticed the bread I was munching on (You know the story: grandfather was a miller in the Ukraine, love of bread in my genes, hardest part of the renal diet for me) tasted salty.  Sure enough, when I started poking around in my files, I found this Feb. 7, 2012 article from NPR.com. Notice that last sentence reference to potassium.

To Hold The Salt, It’s Time To Hold The Bread

by Eliza Barclay

                                                           

                          The sandwich on the left has a total of 1,522 milligrams of salt (per whole sandwich), while the other one has only 853 mg.

It’s no secret that some of the tastiest snacks around — potato  chips, french fries, and processed deli meats — are terrific vehicles  for salt. Without salt, they’d be bland, too starchy, or just plain  dull.

But would you guess that the white bread on your turkey sandwich  could be delivering almost as much as the turkey — up to 400 mg of sodium, or about one-third of  the daily recommended limit for 6 of every 10 adults?

A report out today from the U.S. Centers for Disease Control and Prevention  unmasks bread and some other sneaky sodium-heavy foods. It turns out  that 10 foods — from bread to poultry to cheese to pasta dishes — are responsible  for more than 40 percent of people’s sodium  intake.

According to  the CDC, the average American consumes about 3,300 milligrams of sodium   per day, not including any salt that may be added during a meal.  That’s way more than we need, and puts us at risk for high blood pressure, which can lead to heart disease and stroke.

The U.S. Dietary Guidelines recommend no more than 2,300 mg a day, except if you’re over 51 years  or African American or have high blood pressure, diabetes or chronic  kidney disease. For those groups, the recommendation is 1,500 mg a day.

But   it’s clearly hard to stay within the limits, especially because we can’t control the sodium in some of our foods. Some 65  percent of sodium comes from food  sold in stores, and 25 percent comes  from restaurants. The salt shaker on the kitchen table  isn’t really the problem — it’s the industrial quantities of saline  sodium and crystals that are dumped into processed food to help preserve them and boost their addictiveness.

As public health institutions and other health groups have zeroed in on sodium, sugar and other ingredients in food that can negatively impact health, they’re increasingly looking to food companies to make some changes. Some have responded with commitments. Kraft Foods, purveyor of such salty snacks as Velveeta and Ritz crackers, said in 2010 it would reduce sodium by 10 percent over a two-year period. Last  year, Walmart also said it would cut the sodium in packaged foods by 25  percent by 2016.

Food companies also need to worry about how much potassium is left in food, as Shots has reported.   It turns out that consuming a lot of salt in combination with  too  little potassium is  associated with a greater risk of death, according to researchers from  the Centers for Disease Control and Prevention, Emory and Harvard.

Phosphorous, sodium, potassium.  Apologies to protein for not including it in this blog.

Before I say goodbye, notice the buttons for both the Facebook page and Twitter beneath the blog roll.  We aim to make life easier!

Until next week,

Keep living your life!

It’s Been Raining In Arizona

Rain is not that usual out here, although I do my best to entice it by watering my palm trees every Sunday and threatening to wash my little white car with the red side bars any time I see dark, heavy clouds.  Of course that’s not the rain I’m referring to in this blog.  After a long, dormant period, new sites have been raining on my head.  Someone once told me everything happens in cycles, maybe she was right.

Merry Schiff, a new Facebook reader, brought the following site to my attention. (WAIT!  Merry read the book and wrote a review on Amazon.  How about each of you who has read the book do the same?  It will help get the book into the hands of every newly diagnosed CKD patient – the people I wrote it for.) The site is Safe Kidney Care.  Apparently, it eminated from a clinical study.  I know when I tried to submit an e-mail, it asked me for my bracelet ID, then explained that these were given to each participant of the study.  But you don’t need to have been a member of this study in order to view the site.  It contains neat, easily understood explanations of GFR, CKD, the kidneys themselves, what causes kidney disease, and urine protein.  There’s a glossary and a FAQ section.  What I liked best about it is the safety concerns issues: what to tell your doctor, pill and foods to avoid, fluid intake, drugs that are all right with CKD, heart and diabetes info, Medical follow up, x-rays and other radiological tests.  I also noticed a button for “Tests” and another for “Kidney Function (GFR) Calculator.” I tried their GFR calculator and found it accurate as far as I could tell.  Their resource list is almost as comprehensive as the one in my book, with one or two new additions (Got to go look those up.) This information was on the “About” page: The material of this website was developed and assembled by Dr. Jeffrey C. Fink, M.D., M.S., staff nephrologist, Associate Professor, and Director of the Early Renal Insufficiency (ERI) Program, in collaboration with the staff of the ERI Program and Safe Kidney Care Project, at the University of Maryland, School of Medicine. Funding was provided by grant R01 DK084017 from the National Institute of Diabetes and Digestive and Kidney Diseases of the National Institutes of Health.  The address for the site is: http:www.safekidneycare.org/patient_family.php.

Then there’s a source I’ve come across several times in the last four years and decided it was time to let you know about it.  Live Now: Rethink Kidney Diseases is from Baxter, another resource I included in my book.  While it is generally aimed at dialysis patients, there’s still some info that will work for those of us in the early stages. The Food and Nutrition section is especially helpful.  The Living, Support, and Inspire sections – while aimed at dialysis patients as mentioned – offers some insights into early stage CKD but you’ll have to spend time gleaning them.  This website is: http://livenow.info/GetSupport.aspx.

The third site that dropped from the sky is that of a telephone application for CKD patients called KidneyDiet. As the name implies, it is simple and to the point.  I downloaded it for $4.99.  It is meant to track the phosphorus, potassium, protein, sodium, carbohydrates, cholesterol, fat, and calories of the food you eat.  You first enter the limits of each your nephrologist has given you.  This only has to be entered once. Then you enter each food you’ve eaten during each meal – item by item – and it compares your totals in each category to your limits.  Portions can be changed which is very helpful, but you cannot add new foods.  If you regularly eat foods that are not on the lists available for this app, I’m not certain this is for you.  I really like that it covers everything we need to watch as CKDers, but I wonder if I want to limit my food intake to what is on these lengthy lists.  Could it  be that I’m one of the few who has found foods on my renal diet that are not the norm?  The address for this site is: http://www.kidneydiet.com.

You’ll notice all three of these new sites have been added to the blog roll.  This is not an endorsement of any of them.  I simply want you to be aware of what is available that you might find a good fit for you.

Talking about adding, I tried to add an “Add to the cart” button for the book to the blog, but I didn’t do so well with that.  You can still direct order the book by clicking on the book title on the blog roll.  That will take you to the website for What Is It And How Did I Get It? Early Stage Chronic Kidney Disease  where there IS a functioning “Add to the cart” button.

Ah, lest I neglect to mention (as long as we’re talking about adding), there’s yet another new addition to the family.  Welcome to Temperance, Lara’s newest.  (She’s a “Bones” fan, too)

Until next week,

Keep living your life!

 

It’s a Weighty Question

There’s a new addition to our family.  Oh, no, no!  Of course, with all our daughters, it’s natural to think it’s a grand child, but it’s actually a “grand” cat.  Let’s see now, we’re up to two grand dogs and three grand cats, plus our own Bella dog.  Little miss Annabelle is just twelve weeks old and cute as a button.  Thinking about cats led me to wonder if you knew that cats can also have CKD. And if you knew that some of the same treatments are used for feline CKD as for human CKD. That’s why you’ve got to be careful when you do your own research that what you’re reading deals with human, not feline, CKD.    

My daughter, Abby, brought Annabelle to the bar-b-q my fiance – Bear – threw to celebrate my 65th birthday yesterday (The bar-b-q was yesterday; my birthday was February 2 – Ground Hog’s Day – just in case you were wondering.) so everyone could meet the little cutie.

Being human, we overate, which got me to wondering about how hard it’s become for me to lose weight, much less maintain a healthy weight.  I remembered a blog I’d read on NPR way back in November and decided to share it with you.  I can’t be the ONLY one concerned with my weight, can I?

Hormones And Metabolism Conspire Against Dieters

by Allison Aubrey

There are some fresh insights from Australia that help explain why it’s so difficult for dieters to keep off the weight they lose.

Willpower will only take you so far, in case you haven’t run that experiment yourself. Turns out our bodies have a fuel gauge, not entirely unlike the gas gauge on our cars, that tell us when it’s time to tank up on food.

The gauge relies on hormones that signal to the brain when and how much to eat. But as Dr. Louis Aronne, who directs the comprehensive weight control program at Weill Cornell Medical College in New York, explains, the human fuel gauge can sometimes be way off the mark — especially for dieters.

A study just published in the New England Journal of Medicine documents a pretty extreme diet regimen that limited 50 overweight and obese Australian volunteers to about 550 calories a day for 10 weeks.

Most of them, though not all, actually stuck with the diet, and, not surprisingly, lost a lot of weight. While dieting they shed an average of nearly 30 pounds, or 14 percent of their body weight. At a year, they’d still kept a lot of the weight off, but, on average, their loss was down to 8 percent 15 months after the start of the study.

What happened to their hormones? The researchers measured a whole bunch of them, including insulin, leptin (an appetite suppressant) and ghrelin (a hunger stimulator) and found that more than year after the weight loss, the hormones were telling the people to keep eating — a lot.

As Aronne puts it, their internal gas gauges went down 65 percent instead of the 10 percent or so that would have been more in line with the weight lost. In essence, “they think they’re going to run out of gas  very, very soon.”

So it’s not just a lack of willpower that’s tripping people up. Their hormones are sending a strong, confounding signal to chow down.

What’s more, the study found that the metabolic  rate of the dieters remained low a year after the low-calorie diet  ended, making it even harder to burn off those calories.

While this might be a plausible explanation, I don’t find it all that comforting.  Yes, I do understand better why I’m having such a hard time with the weight, but I also know this means more exercise to burn off some of those calories my body is holding on to.  Guess I’d better learn to love exercise all over again, only exercise that accommodates arthritis this time.

You can find the blog at: http://www.npr.org/blogs/health/2011/11/03/141769832/hormones-and-metabolism-conspire-against-dieters?sc=fb&cc=fp

On another note, the lovely Aaron Milton of the FB page P2P for sufferers of any chronic illness posted an “Add to cart” button for the book there.  I’d like to do that to the blog and the book’s FB page, as well as my person website (www.gail-rae.com) but Aaron’s forgotten how he did it.  Anyone know how to do this?

Until next week,

Keep living your life!

www.myckdexperience.com