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

Maybe It’s Not That Hippy Dippy

I just spent the loveliest three days out of town – in Bisbee, Arizona – and out of touch.  I heartily recommend doing this a few times a year.  Talk about the relaxing we CKDers are supposed to be doing!  That’s also the reason for such a late blog today.  We got home fifteen minutes ago, threw in the wash, threw out the garbage and here I am. Before we officially begin, I’ve got to say that I have been getting some really complimentary comments… in spam!  I’ve mentioned before that I’m having a hard time separating the spam from the “real” comments, so if yours has not been responded to yet, kindly comment again but from a different email address, or don’t include your website address.  One of those two actions should allow your comment through.

I always thought of myself as a wannabe hippy in the ’60s.  You know, the ones who were attracted to some of the hippy thinking but couldn’t quite bring themselves to tune in and drop out or live on a commune.  Now, my fiance and I laugh about the retired lieutenant colonel and the wannabe hippy getting together later in life.  What’s even better is that later in my life, the alternative medicine I shocked my parents and colleagues by believing in and practicing is now becoming complementary medicine.  I’ve written about this in the book, but now Catherine Pearson of The Huntington Post has written about it, too.

How Mainstream Medicine Is Opening Up To Integrative Health

When students elect to spend a month learning about integrative medicine at the University of Maryland, they study by working with the toughest, most frazzled patients: themselves.

In their fourth year of medical school, many of the students are exhausted and fighting to get good grades. They’re tired; they experience headaches and back pain; and they don’t feel as sharp as they’d like.

But these students aren’t focusing on what drugs to prescribe. Instead, they’re looking at integrative therapies in search of better health.

Under the direction of Dr. Delia Chiaramonte, University of Maryland Center for Integrative Medicine’s director of professional education, the students make a values list, which Chiaramonte says helps them consider whether they might suffer from undue stress because they’re not focusing on what’s truly important to them. They also learn to consider how daily stresses and triggers are affecting their lives, and they practice yoga and tai-chi.

“By the end of the month, they almost always feel better themselves,” said Chiaramonte. “They really learn viscerally for themselves that this stuff works.”

The Maryland students aren’t the only ones looking past the pill in search of better health. A growing number of Americans have embraced complementary or integrative medicine, which combines conventional, allopathic medicine with alternative therapies.

According to the most recent data from the National Institute of Health’s National Institute for Complementary and Alternative Medicine, some 38 percent of Americans used some form of alternative medicine in 2007 — up from 36 percent in 2002. [ This was five years ago!  I'll bet that percent is much more than 36 by now.] Experts say such figures explain why a growing number of medical schools have embraced what critics deride as “woo-medicine,” but proponents of the techniques say integrative medicine represents the future of health care.

“More and more students are interested in integrative medicine — that’s clear,” said Dr. Mary P. Guerrera, a professor of family medicine and director of integrative medicine at the University of Connecticut. “There is greater awareness in the world-at-large. With that, students are coming to medical school already aware of what it is.”

In the last decade, the National Consortium of Academic Health Centers for Integrative Medicine, which was formed to promote and support integrative medicine in medical schools, has ballooned from eight member institutions to 51. That list includes top academic names, like Harvard University, Johns Hopkins and the Mayo Clinic.

Last month, University of California-Los Angeles hosted the first-ever National Student Conference on Integrative Medicine, an event created by students looking to build upon the traditional medical school curriculum by exploring topics from what they dubbed an “integrative perspective.” It drew more than 100 attendees, including some who don’t have access to training in integrative medicine at their home institutions.

“I met a resident who wanted to incorporate some of these practices and who said it was so helpful to have physicians who he could talk to. … It gave him hope that he can go out there and learn this,” Guerrera said. “He felt very isolated in his training program, because there was no one he was able to identify to help him.”

Among the institutions that do provide training in integrative medicine, that education takes many forms. Some medical schools offer month-long immersive electives, others simply offer several-hour-long lectures introducing medical students to areas they may not have considered before.

The University of Arizona [not all that far from Bisbee, folks]  has been at the forefront of incorporating integrative medicine into its programs: They’ve partnered up with like-minded residency programs and recently created a distinct program for medical students that lets them supplement their traditional training with a focus in integrative medicine over their four years.

“It’s a really big step that the College Of Medicine was willing to say ‘This is important. This is no longer fad, and we will recognize it,’ ” said Dr. Victoria Maizes, executive director at the Arizona Center for Integrative Medicine.

But some medical schools still lack a formal environment to learn integrative medicine, experts say, and not all institutions have faculty that’s supportive of the techniques. That may in part stem from limited evidence testifying to the efficacy of alternative therapies. Even the National Institute for Complementary and Alternative Medicine acknowledges many complementary and alternative medicines lack the backing of trustworthy clinical trials.

But Maizes argued that many tenets of complementary medicine have already been independently verified. She noted, for instance, that there is significant scientific evidence supporting the role of good nutrition — which is a major focus of integrative medicine — in health, as well as the connection between the mind and body. What is lacking, she said, are clinical trials comparing integrative therapies to traditional medicine.

Which is why supporters believe incorporating integrative medicine in medical schools is important, so that students who apply integrative therapies and ideas are well-grounded in conventional training.

“We’re not cutting anything out from traditional medicine,” Chiaramonte said. “We’re adding to the toolbox.”

You can find the article at: http://www.huffingtonpost.com/2011/11/15/integrative-medicine-medical-schools_n_1093279.html

Remember I ran off last week to go meet my buddy?  I made that comment after writing about how I only wanted to be with people who wanted to be with me.  I’m closing with a picture of that meeting so you can see how being with people who want to be with you (that you want to be with) can be such a happy experience for the two of you.  I really missed you Joan Diamond!

Being with people who want to be with you (that you want to be with, too) can retard the progression of your CKD... or at least make it more pleasant.

Until next week,

Keep living your life!

 

So Tired, Tired Of Waiting For…

It’s the year of the dragon!  Happy Chinese New Year to those who celebrate.  I have fond memories of the parades in NYC’s Chinatown and wending our way through firecracker wielding crowds to get to our favorite restaurant on something like 19 1/2 Pell Street. Or was it Mott Street?  Crooked streets, a below street level entrance and some of the best food I’ve ever eaten.  That was pre-CKD and I wonder if my taste buds have adapted to the renal diet enough that I wouldn’t appreciate the flavor any more if I ever get back there again.  Oh well, my kids can appreciate the food for me and I’ll appreciate the rest of the experience, my usual attitude toward something that might not be available to me these days.

I’m tired these days with “iron deficiency without anemia” but I clearly remember saying no to Epogen when it was suggested to me in the early days of my CKD.  It just struck me as wrong.  It was a gut feeling: I knew nothing about it at the time.  Since then, it’s been suspected of causing cancer and I’ve written about that in a previous blog.  I’ve also written in the book about how it’s necessary to remember that your kidneys are not functioning as they should which means that medication may stay in your body longer so you’d need less of it.  Has someone heard me?  Or was it just time for the medical community to implicate the cautions I’d been suggesting?

On the 19th of this month, Eurekalert.org ran the following:

New drug labels for kidney disease patients — what do they mean?

Drugs that treat anemia are critical for many who have kidney disease

Highlights

• More than 20 million adults in the United States have chronic kidney disease.
• Drugs that treat red blood cell deficiencies are critical for maintaining many chronic kidney disease patients’ health.
• Experts comment on newly released federal recommendations for these drugs.

Washington, DC (January 19, 2012) — The U.S. Food and Drug Administration (FDA) recently recommended that clinicians be more conservative when they prescribe chronic kidney disease (CKD) patients with drugs that treat red blood cell deficiencies. But the drug label’s recommendations fall short, according to two commentaries appearing in an upcoming issue of the Clinical Journal of the American Society Nephrology (CJASN).

The new federal recommendations apply to erythropoiesis-stimulating agents (ESAs). Patients with CKD may need these drugs if they lose the ability to make red blood cells and become anemic, which can make them tired, weak, and short of breath. ESAs treat certain types of anemia by stimulating red blood cell production and decreasing the need for blood transfusions. Drugs in the ESA class are epoetin alfa (marketed as Epogen and Procrit) and darbepoetin alfa (marketed as Aranesp).

Clinical trials have shown that ESAs can increase the risk of patients developing heart-related problems such as strokes and heart attacks when used to intentionally increase hemoglobin  (a red blood cell component) above 13 g/dL. Because of this, the new ESA label now states that clinicians should consider starting ESA treatment when a CKD patient’s hemoglobin is less than 10 g/dL, and they should individualize dosing and use the lowest dose of ESA to reduce patients’ need for blood transfusions. In addition, if a dialysis patient’s hemoglobin level approaches or exceeds 11 g/dL (10 g/dL for a CKD patient not on dialysis), clinicians should reduce or hold the dose of ESA. (The drug label previously recommended that ESAs be dosed to achieve and maintain hemoglobin levels within a target range of 10 to 12 g/dL in CKD patients. This target range concept has been removed from the label.)

A commentary by Braden Manns, MD (University of Calgary, in Alberta, Canada) and Marcello Tonelli, MD (University of Alberta, Canada) suggests that the new guidance is not completely consistent with the evidence and that some of the guidance may prove difficult for physicians to apply in practice. “The recent FDA labeling update seems balanced, although more specific guidance to clinicians would have been helpful,” the authors wrote. They suggest that instead of recommending that physicians individualize ESA dosing and reduce it when hemoglobin exceeds 11 g/dL in dialysis patients (10 g/L in non-dialysis CKD patients), perhaps the FDA should simply have recommended targeting hemoglobin ranges of 9 to 11 g/dL in dialysis patients and 9 to 10 g/dL in non-dialysis patients.

In a second commentary, Alan Kliger, MD, Fredric Finkelstein, MD (Hospital of St. Raphael and Yale University), and Steven Fishbane, MD (Hofstra North Shore-LIJ School of Medicine) take a different angle and propose that treatments for anemia should focus on the individual needs of each patient, weighing the risks and benefits in each case. While it is important to minimize patients’ chances of developing heart-related problems, it is also important for patients to feel less tired, have more energy and vitality, and be better able to function physically. “Instead of simply targeting hemoglobin levels, we should be looking at the hemoglobin level in the context of the patients’ perception of their quality of life and use ESAs judiciously to improve these perceptions,” the authors wrote. In other words, at what hemoglobin level do anemia-related symptoms become less burdensome for each individual patient? With this information in hand, physicians and patients will be better able to balance the risks versus the benefits of treatment.

You can find the article at:  http://www.eurekalert.org/pub_releases/2012-01/ason-ndl011312.php

You’ve got to weigh in with your own thoughts on this drug and it’s dosage.  Yes, your doctor is the specialist for your disease, but this is your life.  Take charge of it.

On the book front, possibilities are popping up, but I like to wait until they are certainties before announcing them, so:

Until next week,

Keep living your life!This is what Early Stage Chronic Kidney Disease looked like in August, 2011.  I could swear I had a picture from last week but just can’t find it.  Thank you to my dear friend and her daughter for inviting me to the wedding in Providence, Rhode Island.  (I’d expected to cool off a bit there, but ran right smack dab into a heat wave so it wasn’t just hot as it is here, but hot and humid.  The wedding made up for that!)

Getting Back To Basics

This is what early stage CKD looks like

What an exciting week last week was.  The TweetChat was one of the most enjoyable learning experiences I’ve had to date… and I’m still learning about that.  The book signing at Bookmans (without the apostrophe) introduced me to several other health related authors I definitely resonated with as well as a maybe cousin who introduced me to the world of YouTube, so expect to see me there as soon as I can fit it into my schedule. In addition to that, I found so many articles that are apt for us that I had a really, really hard time choosing one. Here’s the winner of that contest:

Living a full life after a chronic kidney disease diagnosis

Learning that you have any disease can be a disheartening experience. However, when you are diagnosed with an early stage of chronic kidney disease (CKD) there are many things that you can do to slow its progression, and live a full life. By being conscientious about your health care and lifestyle choices, you can positively affect your quality of life when you have chronic kidney disease.

Tips for living a full life with chronic kidney disease

Here are a few basic tips that may help you slow the progression of chronic kidney disease and live a happier life:

• Knowledge is power – Learn all you can about kidney disease and its treatments.
• Honesty is key – Communicate openly with your health care team and ask the same from them.
• Make lifestyle changes – Be attentive in learning your kidney care plan, take your prescribed medicine, follow the kidney diet and make other recommended changes.
• Think positive – Fill your life with people and things that make you happy. Staying positive is one of the best choices you can make when you have chronic kidney disease.

Knowledge helps you live a full and happy life

When it comes to chronic kidney disease, there is much to learn, from what type of medicine you need to how you make your diet more kidney-friendly. If you continue to learn all you can about chronic kidney disease, you may feel better equipped to deal with it head on. Ask your health care team any questions you may have. You can also go online to see if there are local support groups that meet in discussion forums or in person.

Communicate honestly with your health care team

Your health care team is there to help you manage your chronic kidney disease. It is best to communicate honestly with them so they can best treat the disease.

The kidney diet, medication and other lifestyle tips

Getting answers and guidance to know what to do when you find out you have chronic kidney disease helps you feel more in control of your health. This includes changing your eating habits to include more kidney-friendly foods. To keep your kidneys functioning for as long as possible, it is essential to learn about protein, sodium, phosphorus and potassium, along with knowing how these nutrients make a difference in your health.

Depending on what stage of chronic kidney disease you’re in, your renal dietitian will adjust the amounts of protein, sodium, phosphorus and potassium in your diet. In addition, carbohydrates and fats may be controlled based on conditions such as diabetes and cardiovascular disease. The CKD non-dialysis diet includes calculated amounts of high quality protein. Damaged kidneys have a difficult time getting rid of protein waste products, so cutting back on non-essential protein will put less stress on your kidneys.

Studies confirm that keeping your blood pressure in check can help slow the progression of kidney disease, especially if you have diabetes and/or proteinuria (protein in the urine). According to the National Kidney Foundation (NKF) guidelines, you should keep your blood pressure at or below 130/85 if you have kidney disease, and at or below 125/75 if you also have diabetes and/or proteinuria.

Along with taking your prescribed blood pressure medications, lifestyle changes such as losing weight, exercising, meditating, eating less sodium, drinking less alcohol and quitting smoking can help lower blood pressure. Better blood pressure control helps preserve kidney function.

If you have diabetes, tighter management of your blood glucose level can help slow the progression of kidney disease. It is important to keep your hemoglobin A1c at less than 6.5% or at the level established with your doctor, and closely monitor your blood glucose to avoid hypoglycemia. Ask your doctor or diabetes educator about your diabetes treatment goals and options.

Think positive after your diagnosis

After being diagnosed with an early stage of chronic kidney disease, you are in a good position to take control of your health. Having a positive attitude and surrounding yourself with a support system is necessary to help you live your life to its fullest. As you have learned, there are many ways to slow the progression of kidney disease. Keeping your kidney diet in mind, taking your medicines, controlling any other health issues you may have and changing some lifestyle habits can help. You will have a team of kidney health care professionals on your side to help you every step of the way.

You can find the article at http://www.yourkidneys.com/kidney-education/Treatments/Living-a-full-life-after-a-chronic-kidney-disease-diagnosis/3189 which is part of Yourkidneys.com from DaVita.

“Fill your life with people and things that make you happy.”  This sentence popped out at me.  A few months ago I decided to only be with people who wanted to be with me.  I was tired of constantly calling and running after people I loved who didn’t seem to have the time for me.  It was, and sometimes still is, a bit painful, but I also enjoy my time with friends and family – even professional relationships – so much more.  There are fewer people in my life, but these are the people who live on a two way street: one way to them; one way to me.  I almost wish I’d figured this out a long time ago, but then I would have missed out on the fun I had with the others (the ones who no longer want to be with me), the love that existed then and all the lessons we learned together.  I guess it’s true that people are in your life as you need them and they need you.  I’ll count myself very lucky for having known those people and think kindly of them as I hope they do of me.

Look at the time!  I’ve got to go now.  A long time buddy is in from New Jersey and I get to see her!!!

Until next week,

Keep living your life!

 

 

 

EPO Good, No, EPO Bad

In preparing for tonight’s TwitterChat, Mandy from Libre asked me about any medications I’d like to mention.  I immediately thought of EPO. I remember when I was first diagnosed and complained of fatigue, my nephrologist at the time talked about receiving EPO intravenously.  I think he said twice a month.  And I was horrified.  I didn’t know why; I just was.  It wasn’t the needle because I was used to that already from all the blood tests CKD patients take and the IVs I’d had for various procedures.  It just felt wrong, wrong way down in my gut.  Being a great believer in things happening for a reason whether we know the reason or not, I refused.  And then I refused again.  After reading the two articles from which I’ve taken excerpts for today’s blog, I’m glad I did.

Blood protein EPO involved in origin and spread of cancer

[PRESS RELEASE 5 December 2011] Researchers at Karolinska Institutet have demonstrated that a growth hormone, PDGF-BB, and the blood protein EPO are involved in the development of cancer tumours and that they combine to help the tumours proliferate in the body. These new preclinical findings offer new potential for inhibiting tumour growth and bypassing problems of resistance that exist with many drugs in current use. The results are published in the scientific journal Nature Medicine.

       

Yihai Cao Photo: John Sennet

Angiogenesis is the formation of new blood vessels from pre-existing ones, and is one of the most important research fields in the treatment of such diverse conditions as cancer, metastases, obesity, heart disease, stroke, diabetes and chronic inflammation. The process is also important in healthy individuals for wound healing, the menstrual cycle and other normal processes. Professor Yihai Cao and his team are researching into angiogenesis and its links to cancer and other diseases, and in the present study show the significant role played by a growth factor, PDGF-BB.

“EPO has several functions,” says Professor Yihai Cao. “It produces more blood and stimulates angiogenesis, and we have revealed the underlying mechanism. It also stimulates tumour angiogenesis by directly stimulating the proliferation, migration and growth of endothelial cells and their ability to form the so-called epithelial tube. PDGF-BB promotes the stimulation of extramedullary haematopoiesis, enlargement of the liver and spleen, which increases oxygen perfusion and protection against anaemia.”

The introduction of PDGF-BB in mice thus boosts erythropoietin production and the haematopoietic parameters. In addition, EPO may directly act on tumor cells to promote their growth and metastasis.

You can find the entire article at:  http://ki.se/ki/jsp/polopoly.jsp?l=en&d=130&a=133831&newsdep=130&utm_source=twitterfeed&utm_medium=twitter . It is from Nature Medicine AOP 4 December 2011

Then I found a blog written by a doctor as a patient. This is part of that Wednesday, December 07, 2011 blog. You can read the entire blog entry at:  http://www.typepad.com/services/trackback/6a0133f61818b7970b0162fd805711970d

EPO: Lighting the Fires of Cancer

By Peter Laird, MD

Erythropoietin (EPO) is a natural hormone that mediates the production of red blood cells (RBC’s) that is primarily produced in the renal cortex and small amounts in the liver. Studies over the last decade evaluated the effects of  EPO in diverse populations at risk of anemia outside of the renal dialysis patients, especially in patients undergoing chemotherapy for a variety of cancers. Unfortunately, these studies revealed adverse survival with more rapidly progressive cancers and shortened survival. In addition, in the CKD population, patients were more likely to experience cardiovascular events and death bringing the CHOIR study to an early close as well.  The TREAT trial followed shortly with a higher risk of stroke for patients treated with EPO for CKD related anemia.

Many patients sustained with EPO for years on dialysis vocally protested the new FDA labelling changes and the removal of minimum Hb levels in the QIP. Despite the increased risk of cardiovascular outcomes with EPO and the suspected increased cancer risk for chemotherapy trials, the correction of anemia for many patients overcame the potential risks. However, a new study highlighed by Gary Peterson of RenalWEB sheds light on the role of EPO not only in promoting cancer, but it is actually involved in the development of cancers as well:

PDGF-BB modulates hematopoiesis and tumor angiogenesis by inducing erythropoietin production in stromal cells

As a cancer survivor in addition to my IgA nephropathy and dialysis, I have been very leery of EPO right from the time I first started on dialysis in 2007. My first confrontation with my health care team at dialysis came about when I refused to continue EPO shortly after beginning dialysis. In retrospect of current guidelines, I never needed EPO with a Hb over 12.0 with only iron infusions alone. The issue of adverse cardiovascular outcomes and now this new basic science information that EPO is involved in cancer formation leaves dialysis patients with hard choices. EPO prevents the need for blood transfusions and their associated complications, but at what price?

This brings up the subject of advocating for yourself.  You do NOT need to accept what a doctor tells you or recommends to you just because you are not a doctor and s/he is.  Refuse (unless it’s an emergency) and go home and research…or get a second opinion…or call another patient you trust to suggest another way of finding out if you do need this whatever it is you’re not comfortable with.

On the book front, you already know about tonight’s TwitterChat at 8-9 EST at WhatHowEarlyCKD, courtesy of Libre Clothing.  You do know about that, don’t you?  Come join us.  Bring your questions, comments and friends.  Let’s make this a lively hour.

Those of you living in Arizona, I’ll be looking forward to meeting you on Saturday, January 14th, from 1-3 at Bookman’s in Mesa.  The address is 1056 S. Country Rd.  C’mon down!

Until next week,

Keep living your life!

This is what early stage CKD looks like

Bedtime is Best

This is what early stage CKD looks like

Ladies and Gentlemen, welcome to the first post of 2012.  Here’s hoping you have the very best year you’ve had to date.

Dr. Kevin Pho started my new year right by posting an except from the book at  http://www.kevinmd.com/blog/2012/01/chronic-kidney-disease-patient-perspective.html which is the address for his KevinMD.com blog.  I am constantly overwhelmed by the kindess of the medical professionals in helping me with my quest to get the book into the hands of every newly diagnosed CKD patient.

I’ve posted about taking cholesterol medication at night and am doing so myself.  Then I ran across this article from MedicineNet.com and will explore whether or not to also take hypertension medication at night.  It all makes sense to me, but I would suggest you talk it over with your nephrologist before you make any changes in your medication taking regiment.

Blood Pressure Drugs at Bedtime May Cut Heart Risk

Latest High Blood Pressure News

Study Suggests Benefits to Taking Blood Pressure Drugs Before Going to Sleep

By Kathleen Doheny WebMD Health News

Reviewed by Laura J. Martin, MD

Oct. 27, 2011 — Taking at least one blood pressure medicine at bedtime cuts the risk of heart problems, according to new research.

The study also shows that participants taking at least one blood pressure pill at bedtime had lower blood pressure while asleep.

Earlier studies have suggested that bedtime dosing of at least one blood pressure medication may help control blood pressure. But the new study is believed to be the first to look at whether the timing makes a difference in terms of heart attacks, strokes, and death.

Ramon C. Hermida, PhD, director of the bioengineering and chronobiology labs at the University of Vigo in Spain, studied 661 people with both high blood pressure and chronic kidney disease.

“Taking blood-pressure-lowering medication at bedtime, compared to [taking] all medication upon awakening, not only improved blood pressure control, but significantly reduced the risk of cardiovascular events,” Hermida says in a news release.

The research appears in the Journal of the American Society of Nephrology.

Timing of Blood Pressure Medicines

Hermida’s team asked half of the men and women to take all their blood pressure medicine when they got up in the morning. On average, each person took two medicines. Many took more than three.

The researchers asked the other half to take at least one of their blood pressure medicines at bedtime.

They measured blood pressure by using 48-hour ambulatory monitoring at the start of the study — not just a single daytime measurement used in most earlier studies. They also measured blood pressure three months after any treatment changes or, at the least, every year.

The researchers followed the men and women for about five and a half years. They looked to see which heart problems developed. They tracked death from any cause and from heart disease or stroke.They also tracked heart attack, angina, heart failure, and other problems.

More than half of those with chronic kidney disease also have high blood pressure, according to the National Kidney Foundation. High blood pressure increases the risk of the kidney disease worsening. Overall, one in three U.S. adults has high blood pressure, according to the researchers.

Bedtime Dosing of Blood Pressure Medicine

Those who took at least one blood pressure medicine at bedtime had lower nighttime blood pressure while asleep. They were also more likely to have overall good control of their blood pressure.

The bedtime group was one-third as likely to have heart and blood vessel problems such as heart attack, stroke, or heart failure, the researchers found.

Improved overnight blood pressure with bedtime dosing had a real benefit. Each 5-point drop in sleep-time blood pressure was linked with a 14% reduction in risk for heart attack, stroke, or heart failure.

“Cardiovascular event rates in patients with hypertension can be reduced by more than 50% with a zero-cost strategy of administering blood pressure-lowering medications at bedtime rather than in the morning,” Hermida says in a news release.

Why Blood Pressure Drugs Work Best at Bedtime

Hermida tells WebMD that some of the body’s blood pressure control systems are most active while we sleep. So medicines designed to control those systems work better when taken close to the time when the systems are activated most fully.

The study results ”make absolute sense to me,” says Robert Graham, MD, MPH, an internist and director of residency research at Lenox Hill Hospital. Graham, an assistant professor of medicine at New York University, reviewed the study findings for WebMD.

”Certain medications have the greatest effect on the body while we sleep,” he says. Indeed, bedtime dosing of blood pressure medications recently has been a hot topic among experts.

Graham has been prescribing blood pressure medicines to be taken at bedtime for years, he says, as it seems to help with the top side effects of blood pressure medicine: fatigue and drowsiness.

“If you do have high blood pressure, and have a hard time getting it [down to your] goal, maybe you should talk with your doctor about changing the time [you take the medicine],” he says.

SOURCES: Journal of the American Society of Nephrology, published online Oct. 24, 2011.Ramon Hermida, PhD, director, bioengineering and chronobiology labs, University of Vigo, Pontevedra, Spain.Robert Graham, MD, MPH, director of residency research, Lenox Hill Hospital; assistant professor of medicine, New York University. ©2011 WebMD, LLC. All Rights Reserved.

You can find the original article at: http://www.medicinenet.com/script/main/art.asp?articlekey=151006#

Many, many hopes for a happy new year.  Join us for the upcoming TwitterChat on Jan. 9 from 8-9 EST at #LibreChat.  If you’re local, schedule in the book signing at Bookman’s in Mesa on Saturday, Jan. 14 from 1-3.  I really enjoy meeting my readers and their friends and family.  One person seems even more interesting than the other!

Until next week,

Keep living your life!

Notices for the New Year

Happy New Year, One and All.  May this be your best year yet.

 

I  have two pre-blog notices for you today:

 

What a way to start the year! KevinMD will post an excerpt from the book sometime around 7 p.m. today on: http://www.kevinmd.com/blog/2012/01/chronic-kidney-disease-patient-perspective.html

 

and

 

The correct info for the Jan. 9 Twitter chat from 8-9 EST is: #LibreChat.  Hey, I’m still learning. 

 

Meanwhile, again, the very best new year to you and yours.

Po…Pot…Potassium? What’s that?

Here’s hoping you had a wonderful Christmas – if that’s what you celebrate – and/or Chanukah, Kwaaza or a holiday I don’t know about yet.  Everyone’s financial situation was so tight this year that I was told repeatedly, “I have never spent so little on gifts as I did this year,” or “I can’t afford any gifts. I’ll have to come up with some other ideas.”  And this year was the year that these same people gave the most thoughtul, creative and inspired gifts. From the letter telling me how my step-daughter felt about me to the afternoon spent with my daughter and all the thoughtful, really thoughtful gifts inbetween, if this is how a no-money gifting season goes, I wish we’d treat every year this way – whether or not there was money available.  Tissue alert: With my four daughters – step and biological – and my fiance, “I don’t need no stinkin’ gifts.” (Thank you, “Treasure of Sierra Madres” for the almost quote.)

Okay, you can put the tissues away again.  We did visit and go out to restaurants a bit.  This time I heard another question several times: “What’s with you and potassium?”  Just as I was framing an original post on this very subject, The National Kidney Foundation posted their potassium fact sheet.  Nothing like learning from the masters!

On Potassium and Your CKD Diet

What is potassium and why is it important to you?

Potassium is a mineral found in many of the foods you eat. It plays a role in keeping your heartbeat regular and your muscles working right. It is the job of healthy kidneys to keep the right amount of potassium in your body. However, when your kidneys are not healthy, you often need to limit certain foods that can increase the potassium in your blood to a dangerous level. You may feel some weakness, numbness and tingling if your potassium is at a high level. If your potassium becomes too high, it can cause an irregular heartbeat or a heart attack.

What is a safe level of potassium in my blood?

Ask your doctor or dietitian about your monthly blood potassium level and enter it here:

If it is 3.5-5.0………………………You are in the SAFE zone
If it is 5.1-6.0………………………You are in the CAUTION zone
If it is higher than 6.0……………..You are in the DANGER zone

How can I keep my potassium level from getting too high?

• You should limit foods that are high in potassium. Your renal dietitian will help you plan your diet so you are getting the right amount of potassium.
• Eat a variety of foods but in moderation.
• If you want to include some high potassium vegetable in your diet, leach them before using. Leaching is a process by which some potassium can be pulled out of the vegetable. Instructions for leaching selected high potassium vegetables can be found at the end of this fact sheet. Check with your dietitian on the amount of leached high potassium vegetables that can be safely included in your diet.
• Do not drink or use the liquid from canned fruits and vegetables, or the juices from cooked meat.
• Remember that almost all foods have some potassium. The size of the serving is very important. A large amount of a low potassium food can turn into a high- potassium food.
• If you are on dialysis, be sure to get all the treatment or exchanges prescribed to you.

 

What foods are high in potassium (greater than 200 milligrams per portion)?

The following table lists foods that are high in potassium. The portion size is ½ cup unless otherwise stated. Please be sure to check portion sizes. While all the foods on this list are high in potassium, some are higher than others.

High-Potassium Foods
Fruits	Vegetables	Other Foods
Apricot, raw (2 medium) dried (5 halves)	Acorn Squash	Bran/Bran products
Avocado (¼ whole)	Artichoke	Chocolate (1.5-2 ounces)
Banana (½ whole)	Bamboo Shoots	Granola
Cantaloupe	Baked Beans	Milk, all types (1 cup)
Dates (5 whole)	Butternut Squash	Molasses (1 Tablespoon)
Dried fruits	Refried Beans	Nutritional Supplements: Use only under the direction of your doctor or dietitian.
Figs, dried	Beets, fresh then boiled
Grapefruit Juice	Black Beans
Honeydew	Broccoli, cooked	Nuts and Seeds (1 ounce)
Kiwi (1 medium)	Brussels Sprouts	Peanut Butter (2 tbs.)
Mango (1 medium)	Chinese Cabbage	Salt Substitutes/Lite Salt
Nectarine (1 medium)	Carrots, raw	Salt Free Broth
Orange (1 medium)	Dried Beans and Peas	Yogurt
Orange Juice	Greens, except Kale	Snuff/Chewing Tobacco
Papaya (½ whole)	Hubbard Squash
Pomegranate (1 whole)	Kohlrabi
Pomegranate Juice	Lentils
Prunes	Legumes
Prune Juice	Mushrooms, canned
Raisins	Parsnips
	Potatoes, white and sweet
	Pumpkin
	Rutabagas
	Spinach, cooked
	Tomatoes/Tomato products
	Vegetable Juices

What foods are low in potassium?

The following table list foods which are low in potassium. A portion is ½ cup unless otherwise noted. Eating more than 1 portion can make a lower potassium food into a higher potassium food.

Low-Potassium Foods
Fruits	Vegetables	Other Foods
Apple (1 medium)	Alfalfa sprouts	Rice
Apple Juice	Asparagus (6 spears)	Noodles
Applesauce	Beans, green or wax	Pasta
Apricots, canned in juice	Cabbage, green and red Carrots, cooked	Bread and bread products: (Not Whole Grains)
Blackberries	Cauliflower	Cake: angel, yellow
Blueberries	Celery (1 stalk)	Coffee: limit to 8 ounces
Cherries	Corn, fresh (½ ear)   frozen (½ cup)	Pies without chocolate or high potassium fruit
Cranberries	Cucumber	Cookies without nuts or chocolate
Fruit Cocktail	Eggplant	Tea: limit to 16 ounces
Grapes	Kale
Grape Juice	Lettuce
Grapefruit (½ whole)	Mixed Vegetables
Mandarin Oranges	Mushrooms, fresh
Peaches, fresh (1 small) canned (½ cup)	Okra
Pears, fresh (1 small) canned (½ cup)	Onions
Pineapple	Parsley
Pineapple Juice	Peas, green
Plums (1 whole)	Peppers
Raspberries	Radish
Strawberries	Rhubarb
Tangerine (1 whole)	Water Chestnuts, canned
Watermelon (limit to 1 cup)	Watercress
	Yellow Squash
	Zucchini Squash

How do I get some of the potassium out of my favorite high-potassium vegetables ?

The process of leaching will help pull potassium out of some high-potassium vegetables. It is important to remember that leaching will not pull all of the potassium out of the vegetable. You must still limit the amount of leached high-potassium vegetables you eat. Ask your dietitian about the amount of leached vegetables that you can safely have in your diet.

How to leach vegetables.

For Potatoes, Sweet Potatoes, Carrots, Beets, and Rutabagas:

1. Peel and place the vegetable in cold water so they won’t darken.
2. Slice vegetable 1/8 inch thick.
3. Rinse in warm water for a few seconds.
4. Soak for a minimum of two hours in warm water. Use ten times the amount of water to the amount of vegetables. If soaking longer, change the water every four hours.
5. Rinse under warm water again for a few seconds.
6. Cook vegetable with five times the amount of water to the amount of vegetable.

For Squash, Mushrooms, Cauliflower, and Frozen Greens:

1. Allow frozen vegetable to thaw to room temperature and drain.
2. Rinse fresh or frozen vegetables in warm water for a few seconds.
3. Soak for a minimum of two hours in warm water. Use ten times the amount of water to the amount of vegetables. If soaking longer, change the water every four hours.
4. Rinse under warm water again for a few seconds.
5. Cook the usual way, but with five times the amount of water to the amount of vegetable.

References:
Bowes & Church Food Values of Portions Commonly Used, 17th Ed., Pennington, JA, Lippincott, 1998.
Diet Guide for Patients with Kidney Disease, Renal Interest Group-Kansas City Dietetic Association, 1990.

The National Kidney Foundation would like to thank the

        Council on Renal Nutrition for the development of this fact sheet.

[Me: This is a bit different from my renal diet.  There are foods on here that my diet doesn't allow, but you'll see when you look at your diet that most foods we need to concern ourselves with are mentioned on this list.]

On the book front, don’t forget the Twitter Chat on Jan. 9 from 8-9 EST.  Locals, come on down to Bookman’s in Mesa on Jan. 14 from 1-3 for a book signing.  Oh, KevinMD.com will be running an excerpt from the book within the next week and a half or so.  I’ll send out a bulletin when I find out the exact date.  My new year is already looking pretty bright.  That’s what I wish for you: a happy, healthy new year with lots of whatever you desire in it.

Until next week (which will actually be next year),

Keep living your life!