Coming Home

I’m not a joiner. I’ve never been one. That’s why I was so surprised that I joined the American Association of Kidney Patients… and even more surprised to find myself attending this year’s conference in Tampa Bay, Florida. Readers had been suggesting I do so for years, but I’m not a joiner. Let’s change that; I wasn’t a joiner. The AAKP conference made the difference.

What’s that you ask? Of course, you need to know what they are. This is from their website at https://aakp.org/,

THE INDEPENDENT VOICE OF KIDNEY PATIENTS SINCE 1969™

The American Association of Kidney Patients is dedicated to improving the quality of life for kidney patients through education, advocacy, patient engagement and the fostering of patient communities.

Education

The American Association of Kidney Patients (AAKP) is recognized as the leader for patient-centered education – continually developing high quality, professionally written, edited and reviewed educational pieces covering every level of kidney disease.

Advocacy

For nearly 50 years, AAKP has been the patient voice – advocating for improved access to high-quality health care through regulatory and legislative reform at the federal level. The Association’s work has improved long term outcomes in both quality of health and the ability for patients and family members affected by kidney disease to lead a more productive and meaningful life.

Community

AAKP is leading the effort to bring kidney patients together to promote community, conversations and to seek out services that help maximize patients’ everyday lives.

An IRS registered, Sec. 501(C)(3) organization, AAKP is governed by a Board of Directors. The current board is comprised of dialysis patients, chronic kidney disease patients, [Me here: You did notice ‘chronic kidney disease patients,’ right?] transplant recipients, health care professionals and members of the public concerned with kidney disease. The board and membership are serviced by a staff of five employees under the direction of Diana Clynes, Interim Executive Director, at the AAKP National Office located in Tampa, Florida.”

What’s not mentioned here is that the organization was started by only six patients. I find that astounding, but I’ll let them explain their history:

Founded by Patients for Patients

King County Hospital, New York

The American Association of Kidney Patients (AAKP) has a rich history in patient advocacy and kidney disease education. AAKP started in 1969 with six dialysis patients at King County Hospital in Brooklyn, New York. They wanted to form an organization that would elevate the kidney patient voice in national health care arena, provide patients with educational resources to improve their lives and give kidney patients and their family members a sense of community. They met twice a week in the hospital ward and while hooked up to primitive dialysis machines for 12 to 18 hours at a time they brainstormed, researched and eventually formed AAKP.

The group originally called themselves NAPH (National Association of Patients on Hemodialysis, which later changed to AAKP). AAKP joined forces with other patient groups to fight for the enactment of the Medicare End-Stage Renal Disease (ESRD) Program, testifying before congressional committees, seeking public support and creating a newsletter (the forerunner of today’s AAKP RENALIFE) to keep everyone informed. This effort was crowned with success in 1972 when Congress enacted the program that continues to provide Medicare funding for dialysis and kidney transplantation.

After winning the initial and critical battle for the Medicare ESRD Program, AAKP turned its attention to other important issues — the need to establish a secure national organization to preserve the visibility and influence of patients with Congress and to develop national, educational and supportive programs.

Today & Beyond

AAKP has grown into a nationally recognized patient organization that reaches over 1 million people yearly. It remains dedicated to providing patients with the education and knowledge necessary to ensure quality of life and quality of health.”

This former non-joiner has found her association. I originally avoided the conferences because I thought they would be focused only on dialysis and transplant patients. Boy, was I ever wrong. Here are some of the outbreak (small group) sessions that dealt with other aspects of kidney disease:

Social Media (You’re right: I signed up for that one right away since I identify as a CKD awareness advocate.)

Dental Health

How Kidney Disease Impacts Family Members

Managing the Early Stage of CKD

Understanding Clinical Trials

Treatment Options

Staying Active

Veterans Administration

Caregiver’s Corner

Living Well with Kidney Disease

Avoid Infections

Of course, there were many outbreak sessions for dialysis and transplant patients as well. And there were two opportunities to lunch with experts. That’s where I tentatively learned about governmental aspects of our disease. There were opportunities to learn about nutrition, medications, working, and coping. I’ve just mentioned a few of the 50 different topics discussed.

The general sessions, the ones everyone attended, informed us of what the government’s national policy had to do with kidney disease, legislation, nutrition, patient centered care, and innovation in care (Keep an eye out for Third Kidney, Inc.’s August guest blog.).

I have not covered even half of what was offered during the conference. Did I mention renal friendly food was available and you could dialyze near the hotel if need be? The exhibitors went beyond friendly and explaining their products to being interested in who you were and why you were there. This was the most welcoming conference I’d been to in decades.

AAKP President Paul Conway summed up my feelings about the conference when he was interviewed by The Tampa Bay Times on the last day of the conference,

“This meeting is a way for us to bring patients together and educate them on trends that could affect their own health.”

I met so many others who have kidney disease and so many others who advocate for different types of kidney disease and patients’ rights. I was educated about so many areas, especially those I previously had known nothing about, for example, legislation. It was like coming home. Would I attend again? You bet’cha. Would I urge you to attend? At the risk of being redundant, you bet’cha.

I was so excited about AAKP that I almost didn’t leave myself enough space to tell you about yet another freebie. The Book of Blogs: Moderate Chronic Kidney Disease, Part 1 is no longer in print since it has been divided into SlowItDownCKD 2011 and SlowItDownCKD 2012. But I still have a desk copy. Let me know if you’d like it. My only restriction is that you have not received a free book from me before.

Until next week,

Keep living your life!

Advertisements

Sorry Spiderman, That was Webinars not Webshooters

So much has been going on in my world lately that it was hard to choose what to write about today. In addition to my family, there’s the experience of my first American Association of Kidney Patients Conference, PKD, KidneyX and the list goes on. It was hard to choose, that is, until the American Kidney Fund sent me the following information. They explain who they are, what they do, and why they hold their free monthly educational seminars. Good timing here since the next webinar is this Friday. I’ll let them take over for a while and write some more once they’re done.

Oh, wait. First we need to know what a webinar is. My favorite online dictionary, Merriam-Webster, at https://www.merriam-webster.com/dictionary/webinar defines this in the following way:

“a live online educational presentation during which participating viewers can submit questions and comments”

That means it’s real time; you have to be online to participate. Don’t worry if the time doesn’t work for you because AKF has former webinars on their websites. You just won’t be able to ask your own questions, although you will be able to hear the questions others have asked during the webinar and the answers they received. Okay, now we turn this section of the blog over to The American Kidney Fund.

“The American Kidney Fund (AKF) is a non-profit organization dedicated to helping people fight kidney disease and lead healthier lives.  Living with chronic kidney disease (CKD) or kidney failure is incredibly taxing, and can put strain on all elements of a person’s life. And although doctors are available for patients to ask questions about their disease, many kidney patients do not know what they should ask, and are left needing answers even after leaving a doctor’s appointment.

AKF believes every patient and caregiver has the right to understand what is going on with their health, or the health of their loved one, and how to best manage it. That is where we come in.

The American Kidney Fund hosts free, monthly, educational webinars meant for patients and caregivers. Each webinar explores a different topic relevant to living well with kidney disease. Since the webinar program’s launch in 2016, AKF has hosted over 27 webinars on many topics including nutrition, employment, insurance, transplant, exercise, heart disease, advocacy, pregnancy, mental health, and more.

Webinar speakers are carefully chosen based on their knowledge, and ability to connect with a patient audience. This ensures we deliver the highest quality of information in the best way. Some speakers are kidney patients or kidney donors themselves.  The webinars are delivered from a variety of perspectives so that the advice given is both relatable and reliable.

AKF aims to take complex topics and simplify the content without taking away from the quality of information.  In an effort to be inclusive of non-English speakers, AKF has hosted a webinar entirely in Spanish on preventing and treating kidney disease, and is in the process of translating even more webinars into Spanish.

One of the highlights of the American Kidney Fund webinars is the live Q&A session held during the last 15-20 minutes of each presentation, when the audience can ask their questions in real time and receive an immediate answer from our speaker. This creates a unique space for our attendees to interact anonymously with an expert in a judgement-free zone. We understand the time-demands of being a kidney patient or caregiver, which is why all our webinars, along with the PowerPoint slides, are also uploaded to the AKF website for on-demand viewing.

Our next webinar is on Friday, June 22 from 1-2pm (EST) and will discuss why phosphorus is an important nutrient for kidney patients to consider, and the best ways to manage phosphorus through diet and medicine.  Carolyn Feibig, the dietitian and speaker for this webinar is exceptionally knowledgeable and enthusiastic about her field. If you have questions about how to manage a CKD-friendly diet, this is your opportunity to learn more and to ask your questions.

After each webinar we ask for feedback and suggestions from our audience about future webinars.  We invite you to register now, and then share which topics you would like to hear about next. We hope you will use our webinars as a tool to live the healthiest life possible with kidney disease.

American Kidney Fund www.kidneyfund.org/webinars

I looked at some of their past webinar topics and was impressed with the variety.

My office is abuzz. SlowItDownCKD 2013, both digital and print, is available on Amazon. Give it a few weeks before it appears on B&N.com. I’m excited because I vowed to separate the unwieldy, small print, indexless The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 into two separate books with a SlowItDownCKD title, index, and larger print just as I’d done with The Book of Blogs: Moderate Chronic Kidney Disease, Part 1 (which is no longer available since it is now SlowItDownCKD 2011 and SlowItDownCKD 2012). That’s half way done now, boys and girls… I mean readers.

Here’s something a bit unusual: I have a request from a reader who has the rare kidney disease Calyceal Diverticulum. Rather than asking me to write about it, she’s looking for others with the same disease. Do we have any readers here with this disease? If so, we could make the blog a safe place to connect. Or you could email me and I’d pass on your information to her. Alternately, with her permission, I could pass her information to you. I can understand her need to communicate with others with the same disease, so please do let me know if you’d like to communicate with her.

And last, but not least, and I have to admit brain fog has me here, so bear with me if you’ve read this before. In digging through the morass of my desk, (I have been traveling a lot lately.) I uncovered a beta copy of SlowItDownCKD 2017. That means it has all the content, but I didn’t like the formatting so I re-did it. Would you like it? If so, just be the first one to contact me to let me know. Oh, one restriction: only those who haven’t received a free book from me before, please. I’d like to share the CKD information with as many people as possible.

Until next week,

Keep living your life!

 

 

Last Week, The Country… This Week, The World

Last week, I wrote about a U.S. clinical trial program, AllofUs Research Program. This week we’re going global. Huh? What’s that, you ask. It’s KidneyX.

I can just feel you rolling your eyes. (Ask my children if you don’t think I can do that.)  Hold on a minute and I’ll let KidneyX explain what they are from their website at http://www.kidneyx.org.

“The Kidney Innovation Accelerator (KidneyX) is a public-private partnership to accelerate innovation in the prevention, diagnosis, and treatment of kidney diseases. KidneyX seeks to improve the lives of the 850 million people worldwide currently affected by kidney diseases by accelerating the development of drugs, devices, biologics and other therapies across the spectrum of kidney care including:

Prevention

Diagnostics

Treatment”

I know, I know. Now you want to know why you should be getting excited about this program you don’t know much about. Let’s put it this way. There hasn’t been all that much change in the treatment of kidney disease since it was recognized. When was that? This question was answered in SlowItDownCKD 2015:

“…nephrologist Veeraish Chauhan from his ‘A Brief History of the Field of Nephrology’ in which he emphasizes how young the field of modern nephrology is.

‘Dr. Smith was an American physician and physiologist who was almost singlehandedly responsible for our current understanding of how the kidneys work. He dominated the field of twentieth century Nephrology so much that it is called the “Smithian Era of Renal Physiology“ .He wrote the veritable modern Bible of Nephrology titled, The Kidney: Structure and Function in Health and Disease. This was only in 1951.”

1951?????? It looks like I’m older than the history of kidney disease treatment is. Of course, there were earlier attempts by other people (Let’s not forget Dr. Bright who discovered kidney disease in the early 1800s.) But treatment?

Hmmm, how did Dr. Smith treat kidney disease I wondered as I started writing about KidneyX.

Clinics in Mother and Child Health was helpful here. I turned to their “A Short History of Nephrology Up to the 20th Century” at https://www.omicsonline.org/open-access/a-short-historic-view-of-nephrology-upto-the-20th-century-2090-7214-1000195.php? and found this information:

“His NYU time has been called the Smithian Era of renal physiology for his monumental research clarifying glomerular filtration, tubular absorption, and secretion of solutes in renal physiology …. His work established the concept that the kidney worked according to principles of physiology both as a filter and also as a secretory organ. Twenty-first century clinical nephrology stems from his work and teaching on the awareness of normal and abnormal functioning of the kidney.”

I see, so first the physiology and function of the kidney had to be understood before the disease could be treated.

 

I thought I remembered sodium intake as part of the plan to treat CKD way before the Smithian Era. I was wrong. This is also from SlowItDownCKD 2015:

“With all our outcry about following a low sodium diet, it was a bit shocking to realize that when this was first suggested as a way to avoid edema in 1949, it was practically dismissed. It wasn’t until the 1970s that the importance of a low sodium diet in Chronic Kidney Disease was acknowledged.”

Aha! So one of our dietary restrictions wasn’t accepted until the 1970s. I was already teaching high school English by then. Things did seem to be moving slowly when it came to Chronic Kidney Disease treatment.

Let’s see if I can find something more recent. This, from the National Kidney Fund at https://www.kidney.org/professionals/guidelines/guidelines_commentaries sounds promising, but notice that this has only been around since 1997. That’s only 21 years ago. It has been updated several times, but there doesn’t seem to be that much difference… or maybe I just didn’t understand the differences.

“The National Kidney Foundation Kidney Disease Outcomes Quality Initiative (NKF KDOQI)™ has provided evidence-based clinical practice guidelines for all stages of chronic kidney disease (CKD) and related complications since 1997…. KDOQI also convenes a small work group of U.S. based experts to review relevant international guidelines and write commentary to help the U.S. audience better understand applicability in their local clinical environment.

Clinical Practice Guidelines are documents that present evidence-based recommendations to aid clinicians in the treatment of particular diseases or groups of patients. They are not intended to be mandates but tools to help physicians, patients, and caregivers make treatment decisions that are right for the individual. With all guidelines, clinicians should be aware that circumstances may appear that require straying from the published recommendations.”

Time to get back to KidneyX before I run out of room in today’s blog. Here’s more that will explain their purpose:

“Principles

  • Patient-Centered Ensure all product development is patient-centered
  • Urgent Create a sense of urgency to meet the needs of people with kidney diseases
  • Achievable Ground in scientifically-driven technology development
  • Catalytic Reduce regulatory and financial risks to catalyze investment in kidney space
  • Collaborative Foster multidisciplinary collaboration including innovators throughout science and technology, the business community, patients, care partners, and other stakeholders
  • Additive Address barriers to innovation public/private sectors do not otherwise
  • Sustainable Invest in a diverse portfolio to balance risk and sustain KidneyX”

This may explain why think tanks for kidney patients, all types of kidney patients, are beginning to become more prevalent.

Let’s go back to the website for more information. This is how they plan to succeed:

“Building off the success of similar public-private accelerators, KidneyX will engage a community of researchers, innovators, and investors to bring breakthrough therapies to patients by:

Development

Driving patient access to disruptive technologies via competitive, non-dilutive funding to innovators.

Coordination

Providing a clearer and less expensive path to bringing products to patients and their families.

Urgency

Creating a sense of urgency by spotlighting the immediate needs of patients and their families.”

One word jumped out at me: urgency. I am being treated for my CKD the same way CKD patients have been treated for decades…and decades. It’s time for a change.

One thing that doesn’t change is that we celebrate Memorial Day in the U.S. every year. And every year, I honor those who have died to protect my freedom and thank my lucky stars that Bear is not one of them. There is no way to describe the gratitude those of us who haven’t served in the military – like me – owe to those who have and lost their lives in doing so.

Until next week,

Keep living your life!

All of Me, uh, Us

When I was a little girl, I liked to listen to my father whistle ‘All of Me,’ written by Marks and Simon in 1931 when Charlie, my father, was just 16. Only a few years later, it became a sort of love language for my mother and him. Enter a former husband of my own and my children. When my folks visited from Florida and my then husband’s side of the family journeyed over to Staten Island from Brooklyn to visit them, they all sang the song with great emotion. (By then, Bell’s palsy had robbed my father of the ability to whistle.)

To this day, I start welling up when I hear that song. But then I started thinking about the lyrics:

“All of me
Why not take all of me?”

Suddenly, it popped. For us, those with chronic kidney disease, it should be:

“All of us

Why not take all of us?”

For research purposes. To “speed up health research breakthroughs.” For help in our lifetime. To spare future generations whatever it is we’re suffering… and not just for us, but for our children… and their children, too.

The National Institutes of Health has instituted a new research program for just that purpose, although it’s open to anyone in the U.S. over the age of 18 whether ill with any disease or perfectly healthy. While only English and Spanish are the languages they can accommodate at this time, they are adding other languages.

I’m going to devote most of the rest of this blog to them. By the way, I’m even more inclined to be in favor of this program because they launched on my first born’s birthdate: May 6. All of Us has its own inspiring welcome for you at https://launch.joinallofus.org/

This is how they explain who they are and what they intend to do:

“The goal is to advance precision medicine. Precision medicine is health care that is based on you as an individual. It takes into account factors like where you live, what you do, and your family health history. Precision medicine’s goal is to be able to tell people the best ways to stay healthy. If someone does get sick, precision medicine may help health care teams find the treatment that will work best.

To get there, we need one million or more people. Those who join will share information about their health over time. Researchers will study this data. What they learn could improve health for generations to come. Participants are our partners. We’ll share information back with them over time.”

You’ll be reading more about precision medicine, which I’ve written about before, in upcoming blogs. This is from All of Us’s website at https://www.joinallofus.org/en, as is most of the other information in today’s blog, and makes it easy to understand just what they are doing.

How It Works

Participants Share Data

Participants share health data online. This data includes health surveys and electronic health records. Participants also may be asked to share physical measurements and blood and urine samples.

Data Is Protected

Personal information, like your name, address, and other things that easily identify participants will be removed from all data. Samples—also without any names on them—are stored in a secure biobank.

Researchers Study Data

In the future, approved researchers will use this data to conduct studies. By finding patterns in the data, they may make the next big medical breakthroughs.

Participants Get Information

Participants will get information back about the data they provide, which may help them learn more about their health.

Researchers Share Discoveries

Research may help in many ways. It may help find the best ways for people to stay healthy. It may also help create better tests and find the treatments that will work best for different people.

I’m busy, too busy to take on even one more thing. Or so I thought. When I read the benefits of the program (above) and how easy it is to join (below), I realized I’m not too busy for this and it is another way to advocate for Chronic Kidney Disease awareness. So I joined and hope you will, too.

Benefits of Taking Part

Joining the All of Us Research Program has its benefits.

Our goal is for you to have a direct impact on cutting-edge research. By joining the program, you are helping researchers to learn more about different diseases and treatments.

Here are some of the benefits of participating in All of Us.

Better Information

We’re all human, but we’re not all the same. Often our differences—like age, ethnicity, lifestyle habits, or where we live—can reveal important insights about our health.

By participating in All of Us, you may learn more about your health than ever before. If you like, you can share this information with your health care provider.

Better Tools

The goal of the program is better health for all of us. We want to inspire researchers to create better tools to identify, prevent, and treat disease.

You may also learn how to use tools like mobile devices, cell phones and tablets, to encourage healthier habits.

Better Research

We expect the All of Us Research Program to be here for the long-term. As the program grows, the more features will be added. There’s no telling what we can discover. All thanks to participants like you.

Better Ideas

You’re our partner. And as such, you are invited to help guide All of Us. Share your ideas and let us know what works, and what doesn’t.

Oh, about joining:

Get Started – Sign Up

Here’s a quick overview of what you’ll need to do to join.

1

Create an Account

You will need to give an email address and password.

2

Fill in the Enrollment and Consent Forms

The process usually takes 18-30 minutes. If you leave the portal during the consent process, you will have to start again from the beginning.

3

Complete Surveys and More

Once you have given your consent, you will be asked to complete online health surveys. You may be asked to visit a partner center. There, you’ll be asked to provide blood and urine samples and have your physical measurements taken. We may also ask you to share data from wearables or other personal devices.

Before I leave you today, I have – what else? – a book give away. The reason? Just to share the joy that’s walked into my life lately. It’s easy to share the troubles; why not the joys? If you haven’t received one of my books in a giveaway before, all you have to do is be the first person to let me know you want this copy of SlowItDownCKD 2017.

 

I need to get back to that online health survey for All of Us now.

Until next week,

Keep living your life!

 

Published in: on May 21, 2018 at 10:38 am  Leave a Comment  
Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

Compliance 101

Welcome to the last blog of National Kidney Month 2018. We all know I rarely write about dialysis or transplant, but a friend who is awaiting a transplant brought this book to my attention. This particular section of the book sparked my interest since non-compliance can be an issue in any stage of kidney disease. One part of my mission is to create awareness among Chronic Kidney Disease patients, their friends, families, and loved ones of how important compliance with their medical team is. Dr. Michael B. Fisher is a nephrologist who thinks the same way.

Today’s blog is mostly an excerpt from the upcoming book Surviving Kidney Disease. According to his book’s web page:

“Dr. Fisher received his medical degree from SUNY in 1968 and did his nephrology fellowship at UCLA in 1972. He has been the Medical Director of Acute Dialysis at Santa Barbara Cottage Hospital from 1984 to present. He has done 131 teaching lectures at this hospital including topics such as management of malignant hypertension, renal management of toxic shock syndrome, and NSAID drug-induced renal failure. Dr. Fisher was voted by the medical residents the outstanding teacher of the year on 1988. He is active in promoting well-being among renal patients and educating them on care options.”

Dr. Fisher, the floor (er, keyboard) is yours:

“Each patient is unique. A teenager will have different issues than a professor in his fifties, or an elderly diabetic lady whose understanding of English is limited. Therefore, the only effective way to deal with non-compliance is to understand the issues that will interfere with the learning curve for a patient and then customize the lesson plan for the specific needs. The goal is to prevent major non-compliance by initiating a program of education where the patient and family learn why it is critical to make the sacrifice and are motivated to follow doctor’s orders.

The patient will gradually feel better over time after just having started dialysis and that is when the teaching really begins. If the patient is a transplant candidate, discussion of how to get a kidney is uplifting and sets the stage for the need to follow the prescription, no matter how difficult.

The truth is this is a difficult challenge because of the complex nature of kidney disease and the human mind.  I have found that by immediately presenting the possibility for a kidney transplant while also explaining why the need for a strict diet and appropriate fluid restriction, people begin to see a way out of their predicament, spirits soar, and their inner source of strength takes over.  Hope inspires people to find the how to overcome the most daunting challenges.

Here is a synopsis of a recent patient care meeting with a 22 year -old, father of 2 who has been on hemodialysis for 5 years. He is on the transplant list and could be called at any time. If he were called tomorrow, he would be rejected because his parathyroid hormone level (PTH) is ten times above the target number.

He appeared at a patient care meeting, attended by our full staff. When we reminded him that his PTH level was 2000 and that we had been aiming for 200 he was unfazed. Then I explained to him again that even though he felt well, at any time he might suffer from severe bone pain from a disease which is silent even though it is damaging the bones and every organ system. I discovered that he works five days a week despite having dialysis treatments three times in a week. His mother-in-law prepares his lunch every day which consists of a half of a chicken which provides high quality protein and with it an enormous amount of phosphorus. He also failed to take a drug called Sensipar which lowers PTH.

He has felt well, looks muscular, and rather healthy, so in his mind why fix it if it doesn’t seem broken?  I must have finally reached him when I told him what likely happening to his bones and other organs. The most powerful argument that I presented was that he was so close to being called for a kidney transplant, his ticket to a normal life, one where he could eat and drink that things he loved the most.

The bell rang in his mind. He asked questions, took notes, made an appointment to see me to further discuss kidney transplant, his diet and medicines. The social worker connected with him as did the dietician who was going to talk to the mother-in-law about reducing phosphorus in the diet and placing his pills in an organizer. He left with more knowledge and hope that if he talk (sic) ownership of his diet, he would soon receive that kidney transplant that would change his life forever.”

When I was a high school English teacher in New York City a million years ago – or so it seems – my feeling was that you have to meet the student at whatever level they are and start their education from there. I carried that feeling with me into my CKD Awareness Advocacy. It seems Dr. Fisher does, too. As CKD patients, we are each unique.

That’s one of the many and varied reasons I cover so many different topics and often revisit a topic several years later. Just as with my high school students, CKD patients may not be ready to hear medical advances or suggestions to make living with CKD easier the first, second, third, or even 99th time they hear – or read – it. They may gloss over it when it’s presented one way, but glom onto it when presented another.

Just in case you’re wondering how Dr. Fisher knows what a patient feels like, this is from his website at http://www.michaelfishermd.com/:

“I suddenly became a patient myself and came face-to-face with the idea that I was no longer a part of the ‘temporarily healthy.’ Walking in the slippers of my patients allowed me to more fully understand the challenges they faced and the courage that they found to overcome them….”

Although not a renal patient, he could see for himself just how brave you need to be to listen, to comply, to ask questions, to make suggestions as a patient who is probably scared out of your mind with your diagnose to begin with.

Here’s to all of us: the nephrologists, renal nutritionists, phlebotomists, schedulers, and the patients themselves. May this be your month for learning all you can about Chronic Kidney Disease.

Until next week,

Keep living your life!

Smoke Gets In Your Hair

Last weekend I was in Las Vegas renewing my vows to Bear as my brother and sister-in-law renewed their vows to each other. It was their 50th year of marriage, our 5th. I listened to what they had to say to each other during the ceremony and realized that was what I would have said to Bear on our 50th, if we were young enough to be able to count on having a 50th. And then I began to wonder how many people do reach this milestone in their lives.

More than the ceremony, it was the smoke in the casinos, the restaurants, the shops, and the cabs that got me to thinking about this. Even our non-smoking rooms had the scent of cigarettes. I know how much harm smoking can do to my kidneys, but what was this second hand smoke doing to them? If it clung to our hair and clothes, what else was it doing to us?

The very minute I was told I have CKD, I stopped the social smoking I had been doing. I would be surprised if I smoked a whole pack of cigarettes each month back then. But I wasn’t taking any chances on not raising my GFR. It was 39% at diagnose, so the smoking had to stop. Yet, it wasn’t until this past weekend that I became concerned about second hand smoke.

It appears that I’m not the only one concerned about second hand smoke. The National Kidney Fund (NKD) at https://www.kidney.org/blog/staying-healthy/second-hand-smoke-may-be-harmful-kidneys offers the following:

“Secondhand smoking was defined as living with at least 1 person who smoked, or having an elevated level of cotinine (a breakdown product of nicotine) in their blood. The researchers found that active smoking was associated with slightly lower kidney function and higher amounts of protein in the urine. Interestingly, secondhand smoke exposure was also associated with slightly lower kidney function in this study even after taking [into] account differences in age, sex, weight, demographics and parental education level. Differences in kidney function observed in the study were relatively small, but these small differences could have important effects on risk of developing hypertension and chronic kidney disease.”

What makes it worse is that hypertension, or high blood pressure, is one of the two leading causes of CKD. So second hand smoke could lead to CKD itself and/or one of the leading causes of CKD. Either way, it sounds like a losing proposition to me.

Of course, I needed to know more about cotinine. The Centers for Disease Control and Prevention (CDC) at https://www.cdc.gov/biomonitoring/Cotinine_FactSheet.html was able to help me out here:

“Cotinine is a product formed after the chemical nicotine enters the body. Nicotine is a chemical found in tobacco products, including cigarettes and chewing tobacco. Measuring cotinine in people’s blood is the most reliable way to determine exposure to nicotine for both smokers and nonsmokers exposed to environmental tobacco smoke (ETS). Measuring cotinine is preferred to measuring nicotine because cotinine remains in the body longer.

How People Are Exposed to Cotinine

Nicotine enters people’s bodies when they smoke or chew tobacco. When exposed to ETS from nearby smokers, smaller amounts of nicotine enter the body of the nonsmoker. Workers who harvest tobacco and produce tobacco products can also be exposed through their skin.”

While I don’t usually write about younger people and Chronic Kidney Disease, this quote from the Johns Hopkins Bloomberg School of Public Health at https://www.jhsph.edu/news/news-releases/2013/navas-acien-smoking-may-impact-kidney-function-among-adolescents.html caught my eye:

“’Tobacco use and exposure to secondhand tobacco smoke are major health problems for adolescents, resulting in short-term and long-term adverse health effects,’ said Ana Navas-Acien, MD, PhD, senior author of the study and an associate professor with the Bloomberg School’s Department of Environmental Health Sciences. ‘In this nationally representative sample of U.S. adolescents, exposure to tobacco, including secondhand smoke and active smoking, was associated with lower estimated glomerular filtration rates—a common measure of how well the kidneys are working. In addition, we found a modest but positive association between serum cotinine concentrations, a biomarker of tobacco exposure, among first-morning albumin to creatinine ratio. These findings further support the conclusion that tobacco smoke may damage the kidneys.’”

Lower estimated glomerular filtration rates???? No, thank you. I rarely go to casinos or any other place that allows smoking for that matter. I just don’t like the odor. Now I have a much more important reason to avoid such places.

Switching topics here. Something else I rarely mention is CKD cookbooks, probably because I don’t cook that often and firmly believe CKD patients need to eat according to their lab results. Months ago I received one such book in the mail and carefully explained to the author’s representatives that I don’t review CKD cookbooks on the blog. It’s an attractive book and always caught my eye just lying there on the kitchen counter for the last several months. During one of those in-the-house-trying-to-recoup-my-energy days after we got back from Las Vegas, I did the logical thing and picked it up to read.

Susan Zogheib, a registered dietitian with a Master’s in Health Science fulfilled my CKD cookbook dreams in her The Renal Diet Cook for the Newly Diagnosed in that she suggested repeatedly that we, as CKD patients, must work on our diets with our doctors and/or renal dietitians, especially if we have high blood pressure or diabetes. I also like that she clearly made the point that you have to take into account the stage of your CKD, your labs, your concurrent medical problems, and more. This, while including fairly easy recipes for some good looking meals. I never thought I’d like a cookbook. Well, there was the Betty Crocker one pre-CKD when I was a young bride still in college.

My 71st birthday is Friday. Naturally that means it’s time for a book giveaway. My birthday equals your gift. Three is my favorite number, so the first three book giveaway virgins (haven’t won a book before) to offer another bit of information about second hand smoke or CKD cookbooks win one of my CKD books. Sounds fair to me.

Until next week,
Keep living your life!

Banting

I can just about hear you asking, “What in heaven’s name is banting?” You know I like to read Victorian murder mysteries, right? The one I’m reading now is Murder on the Minneapolis by Anita Davison. In it, she has one character discuss a method of losing weight by strict eating limitations publicized by William Banting. I find it amusing that he was a celebrated undertaker, not that this had anything to do with the dietary restrictions.

According to Wikipedia – which is open to public editing –

“In 1863, Banting wrote a booklet called Letter on Corpulence, Addressed to the Public… which contained the particular plan for the diet he followed. It was written as an open letter in the form of a personal testimonial. Banting accounted all of his unsuccessful fasts, diets, spa and exercise regimens in his past, then described the dietary change which finally had worked for him, following the advice of a physician. His own diet was four meals per day, consisting of meat, greens, fruits, and dry wine. The emphasis was on avoiding sugar, saccharine matter, starch, beer, milk and butter. Banting’s pamphlet was popular for years to come, and would be used as a model for modern diets…. Initially, he published the booklet at his personal expense. The self-published edition was so popular that he determined to sell it to the general public. The third and later editions were published by Harrison, London. Banting’s booklet remains in print as of 2007, and is still available on-line. …He undertook his dietary changes at the suggestion of Soho Square physician Dr. William Harvey, who in turn had learnt of this type of diet, but in the context of diabetes management, from attending lectures in Paris by Claude Bernard.”

It’s starting to sound familiar, isn’t it? As Chronic Kidney Disease patients, and certainly if you’re also diabetic, we’re often told by our doctors to lose weight.

Have you heard of the Keto Diet? As a matter of fact, the app for that was included in last week’s blog. That’s one way to lose weight, but it’s too protein and fat heavy for CKD patients. Another way is to count carbohydrates or Bant.

I find it fascinating how the things I’m interested in seem to dovetail sometimes. For example, Chronic Kidney Disease, losing weight, Victorian murder mysteries, and banting.

I know. We need to back track a bit. Let’s start with carbohydrates. What are they anyway? According to the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/carbohydrate , they are:

“any of various neutral compounds of carbon, hydrogen, and oxygen (such as sugars, starches, and celluloses) most of which are formed by green plants and which constitute a major class of animal foods”

Here’s a list of carbohydrates from The American Diabetes Association at http://www.diabetes.org/food-and-fitness/food/what-can-i-eat/understanding-carbohydrates/carbohydrate-counting.html:

• grains like rice, oatmeal, and barley
• grain-based foods like bread, cereal, pasta, and crackers
• starchy vegetables like potatoes, peas and corn
• fruit and juice
• milk and yogurt
• dried beans like pinto beans and soy products like veggie burgers
• sweets and snack foods like sodas, juice drinks, cake, cookies, candy, and chips

Now that we have a definition and examples of carbohydrates, why limit them? The MayoClinic at https://www.mayoclinic.org/healthy-lifestyle/weight-loss/in-depth/low-carb-diet/art-20045831 has that one covered.

“Your body uses carbohydrates as its main fuel source. Complex carbohydrates (starches) are broken down into simple sugars during digestion. They’re then absorbed into your bloodstream, where they’re known as blood sugar (glucose). In general, natural complex carbohydrates are digested more slowly and they have less effect on blood sugar. Natural complex carbohydrates provide bulk and serve other body functions beyond fuel.

Rising levels of blood sugar trigger the body to release insulin. Insulin helps glucose enter your body’s cells. Some glucose is used by your body for energy, fueling all of your activities, whether it’s going for a jog or simply breathing. Extra glucose is usually stored in your liver, muscles and other cells for later use or is converted to fat.

The idea behind the low-carb diet is that decreasing carbs lowers insulin levels, which causes the body to burn stored fat for energy and ultimately leads to weight loss.”

Wait a minute. What are these “complex carbohydrates” they mention? This is what I found on MedlinePlus at https://medlineplus.gov/ency/imagepages/19529.htm:

“Complex carbohydrate foods provide vitamins, minerals, and fiber that are important to the health of an individual. The majority of carbohydrates should come from complex carbohydrates (starches) and naturally occurring sugars, rather than processed or refined sugars, which do not have the vitamins, minerals, and fiber found in complex and natural carbohydrates. Refined sugars are often called ‘empty calories’ because they have little to no nutritional value.”

Got it. Complex carbohydrates provide what our bodies need, but too much of them can raise our blood glucose levels or turn to fat.

If there are complex carbohydrates, does that mean there are simple ones, too? Healthline (Thank you again for including this blog among the six best kidney blogs of 2016 & 2017, Healthline.) at https://www.healthline.com/health/food-nutrition/simple-carbohydrates-complex-carbohydrates#2 was succinct in describing these:

“Carbohydrates are made up of three components: fiber, starch, and sugar. Fiber and starch are complex carbs, while sugar is a simple carb. Depending on how much of each of these is found in a food determines its nutrient quality.”

Just in case you’re not sure which foods to avoid, Everyday Health at https://www.everydayhealth.com/diet-nutrition/diet/good-carbs-bad-carbs/ has a beginner’s list for us:

• Soda
• Candy
• Cookies
• Pastries and desserts
• Sweetened beverages, such as lemonade or iced tea
• Energy drinks
• Ice cream

Before you ask, fruits and low fat or nonfat milk do contain simple carbohydrates, but these are healthy for you. You still have to include the milk in your phosphorous count on the renal diet.

This is amazing! Some blogs just flow while I get to the point of just about tearing my hair out to write others (Hey, stress is not good for CKD.) This one flowed.

Congratulations to Christine Barnard from South Africa. She was the first person to let me know she’d read last week’s blog. Instead of winning just one book, she won four: SlowItDownCKD 2012; The Book of Blog: Moderate Stage Chronic Kidney Disease, Part 2; SlowItDownCKD 2015; and SlowItDownCKD 2016. Why? Because she mentioned that there are few sources of Chronic Kidney Disease information in South Africa. Christine, please be sure to email me your physical address. Use SlowItDownCKD@gmail.com.

Until next week,
Keep living your life!

Apps Again

Last week I mentioned kidney diet apps and that I suspected the ones I wrote about in SlowItDownCKD 2016 may be outdated or not exist anymore. Let’s jump right in before I need to get up from the computer to walk around for a while. I’ve been working on another book and been sitting here a long time. We all know that’s not good for us.

This is from SlowItDownCKD 2016:

“According to GCFLearnFree.org – a program of Goodwill Community Foundation® and Goodwill Industries of Eastern NC Inc.® (GIENC®) – at http://www.gcflearnfree.org/computerbasics/understanding-applications/1/,

‘Simply put, an app is a type of software that allows you to perform specific tasks. Applications for desktop or laptop computers are sometimes called desktop applications, while those for mobile devices are called mobile apps.’

During an internet search, I found that NephCure which provides ‘detailed information about the diseases that cause Nephrotic Syndrome (NS) and Focal Segmental Glomerulosclerosis (FSGS)’ (and was one of the first organizations to interview me about CKD, by the way) – at http://nephcure.org/livingwithkidneydisease/managing-your-care/kidney-health-tracking-tools/helpful-mobile-apps/ was way ahead of me in discussing apps. This is what’s on their website:

Diet and Nutrition Apps

• KidneyAPPetite – Gives daily summaries of key nutrients for kidney health, check the nutritional value of foods before you eat it, and provides printable summaries to refer to. Great for patients on a renal diet! Cost: Free, Device: iOS

• Pocket Dietitian – Created by a Nephrologist, allows you to choose your health conditions and dietary restrictions to see recommended foods as well as keep track of what you have eaten. You can even see your past nutrition in graph form. Cost: Free, Device: iOS and Android

• My Food Coach – is designed to help you understand and manage all of your nutritional requirements. This app offers personalized nutrition information, recipes and meal plans. Cost: Free, Device: iOS and Android

• HealthyOut – Enables you to search and order nearby healthy food and browse for healthy options while out to eat. You can even choose a specific diet such as gluten free! Cost: Free, Device: iOS and Android

• Restaurant Nutrition – Allows you to search restaurants and look at nutritional values, locate nearby restaurants, and keep a food journal. The Restaurant Nutrition application shows nutritional information of restaurant foods. Cost: Free, Device: iOS and Android

While I could easily go to most of the apps’ websites by clicking on the name while I held down the control button, this was not the case with Pocket Dietician. I was able to find it and lots of descriptive information about it in the Google Play store, but kept getting the message that I had no devices. The help function on the site was not helpful.

What about My Food Coach? It has an extra feature that my favorite lacked: a warning when a recipe would bring you over your renal diet limits. It’s recipe oriented, which doesn’t endear it to me since I like to experiment cooking my big five ounces of protein daily with my three different size servings of different fruits that are on my renal diet. I also avoid red meat.

HealthyOut, while not specifically for CKD, does have a function for the Mediterranean diet which is more often than not recommended for us. I thought this was a hoot since it never occurred to me that you can check restaurant foods by the restaurant name. I am adding this app to my iPhone.”

It looks like I was wrong. Most of these are still available. Unfortunately KidneyDiet, my all-time favorite, is no more. Neither is Restaurant Nutrition. But let’s see what other apps are available for us.

If sodium (salt) is a problem for you, there’s an app for that. According to For Your Kidney at http://foryourkidney.com/en/2016/01/04/5-best-apps-kidney-health/:

“Sodium One is a user friendly Sodium Counter app. Patients with High Blood Pressure or Chronic Kidney Disease can benefit from this app a lot. The App allows you to track water intake as well as exercise and weight history. The main focus of Sodium One however, is to manage your daily sodium allowance. The tracking is actually very accurate when it comes to calorie counts. A great extra is that this app does not require an internet connection.”
This is $0.99 and only available in IOS. That’s Apple.

I do want to mention there are apps specifically for those on dialysis. I have not included them in this blog, although NephCure did include KidneyAPPetite. An internet search for ‘dialysis apps,’ or something along that line, will help you find them.

I’ve tried a few other apps that were not dedicated to those with CKD and found moderate success with them. One is Keto, which bills itself as “Stupid Simple”… and it is. However, it’s limited to carbs, fat, and protein. You’re on your own for phosphorous, potassium, and sodium. Oh, KidneyDiet, come back! The nice part of Keto is that you can scan barcodes (Is that really one word these days?) and add your own foods and meals IF you upgrade from the basic free version. Their website at https://play.google.com/store/apps/details?id=com.venninteractive.ssketo  tells you this is only available for Android, but I have it on my IOS device.

Under Armour’s MyFitnessPal at https://freepps.top/apps/health-fitness/calorie-counter-myfitnesspal has been around for a while. Again, while this is not perfect for those with CKD, it is a great help. I like that you can set goals and request reminders about your goal, as well as add foods. Of course, Premium offers you a lot more… and charges you accordingly. Articles about exercise and weight pop up, too. And then there are recipes. Again, it doesn’t do the whole trick, although it does count potassium, protein, sodium and calories . What’s missing is phosphorous. The bonuses are carb, fat (by type, no less) cholesterol, fiber, sugar, vitamins A & C, calcium, and iron counters. This is also a free Apple app.

Lose It! at https://www.loseit.com/ is not as comprehensive for the CKD patient. It allows you to track fat, carbs, protein, and calories. Here, again, you can set your goals. You can even take pictures of your food to track it. However, I find I want something more CKD oriented with potassium, phosphorous, and sodium counters included. This looks like it may be a good app for weight loss, but I’m wondering how much help it is for the CKD patient.. This is a free Android app.

At this point, I stopped checking out apps. There are so many more in just a little over the year I last looked at apps. But they’re not quite for the likes of us. It looks like MyFitnessPal is the closest we can come to a kidney app, unless you’re on dialysis. Then I’d go for KidneyAPPetite.

Before I go, here’s a shameless plug for my new book. It’s Sort of Dark Places, available on Amazon and is not CKD related at all. I’ve fictionalized the stories people have told me about their most difficult times. I found it cathartic to write even though these are not my stories. Advance readers have told me they did, too. Give it a try.

In honor of the great Dr. Martin Luther King’s birthday, the first person who hasn’t already won a free book that lets me know they’ve read today’s blog wins a copy of SlowItDownCKD 2012.

Until next week,
Keep living your life!

The Elusive Diet Plan

I find it amazing, absolutely amazing, how limited my diet has become in the last decade. It’s not just the renal diet, or even the renal diet with the prediabetes way of eating added. I had some testing done and found ‘food sensitivities’ as well as out and out allergies that needed attention. And now? It turns out I have Irritable Bowel Syndrome or IBS, which requires I change my eating habits yet again.

When I was first diagnosed with Chronic Kidney Disease, I was introduced to the Northern Arizona Council on Renal Nutrition Diet. I reproduced that in SlowItDownCKD 2015 and here it is again…still crooked. (Can I blame that on macular degeneration? No? Oh well.) Unfortunately for me, I can’t just “limit,” which is what the second column on each page suggests, so I have to avoid. One exception leads to a second and then a third, so to me, “limit” means Do.not.eat.

I understood I had to limit my phosphorous, potassium, protein, and sodium to preserve my kidney function and was scared enough by my diagnosis to follow this diet religiously, recording the amounts I ate in a little notebook. Nowadays, there are apps that will help you track these electrolytes. I listed a few in SlowItDownCKD 2016, but that list surely needs updating a full year or more later. Perhaps I should write about that next week.

Back to the renal diet. This meant changes for me, lots of them. My staple – bread – would now be limited, as would potatoes. I am so the grandchild of my grandfather, a Russian miller. I am also lactose intolerant so those limitations were not a problem since I didn’t eat dairy in the first place. The measuring is what I had to get used to in all categories… and I did, to the point where I can eye measure just about all the foods.

Then came the pre-diabetes dietary changes. My A1C was continually elevated. I didn’t want to develop diabetes, so I knew this test that measures blood glucose had to start registering lower readings. Hmmm, I was able to adhere to the renal diet. I’ll just modify that with these new changes, I thought.

Writing The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2  helped me  understand how to do this:

“Ahh! So all carbohydrates, whether from starches or sugars break down into sugar glucose. This is starting to sound familiar. When I brought my pre-diabetes to the nutritionist at my nephrologist’s office, she gave me quite a bit of information and a handout from DCE, a dietetic practice group of the American Dietetic Association. Did you know that starchy vegetables, fruits, juices and milk also contain carbohydrates? It hadn’t occurred to me…. The Mayo Clinic has a good diet plan for diabetes, but it won’t work for Chronic Kidney Disease patients as it is. For example, whole wheat flour raises your blood glucose less than white flour, but has too much phosphorous for us, so we are warned to avoid it. Yoghurt, cheese, beans, and nuts are no-nos on my renal diet, but are often recommended in diabetes diets.”

My diet became noticeably more limited. But I was still willing to work on it. I remembered that CKD can cause diabetes, just as diabetes can cause CKD. I had enough trouble without diabetes, thank you very much.

Boom! Enter food allergies and sensitivities. Lettuce? I was living on salads at this point, but no more unless I could get a spinach salad. I wouldn’t necessarily miss lima beans, brazil nuts, buckwheat, celery, cherries, corn, cucumbers, lamb (ugh), oranges, red raspberries, and watermelon. Whine: some of my staples were on the list, too: rice, shellfish, vanilla, and yeast. Oh yeah, the little bit of mustard I cheatingly ate every once in a while was on the allergy list, too. *sigh*

It took quite a bit of telling myself I could do this and referring to this NEW list constantly to get my now three purpose diet under control. It was especially hard during sad times in my life.

As happens (thank goodness), the sad times with their emotional eating passed and I could get back to doing what my body needed. So why was I feeling so unwell? Was it a UTI? An ulcer? Something worse?

Welcome to eating modification number four. It’s Irritated Bowel Syndrome… and stress can be the source. The stress was caused by sadness in my case: my brother’s death, a bad outcome for testing on another family member, a third one’s hospitalization, a friend’s death, another’s illness. Now that my sad times were ended, at least temporarily, I had to deal with the aftermath.

While the disease is self-explanatory and the causes apparent, I still needed to know how to treat it. The MayoClinic at https://www.mayoclinic.org/diseases-conditions/irritable-bowel-syndrome/diagnosis-treatment/drc-20360064 was helpful, but also informed me that each person with IBS may need different treatments and that there were different kinds of IBS and different tests for each kind. This is the information I found most helpful, although two more of my staples – broccoli and cauliflower – are no longer available to me.

“Your doctor might suggest that you eliminate from your diet:

• High-gas foods. If you experience bloating or gas, you might avoid items such as carbonated and alcoholic beverages, caffeine, raw fruit, and certain vegetables, such as cabbage, broccoli and cauliflower.
• Gluten. Research shows that some people with IBS report improvement in diarrhea symptoms if they stop eating gluten (wheat, barley and rye) even if they don’t have celiac disease.
• FODMAPs. Some people are sensitive to certain carbohydrates such as fructose, fructans, lactose and others, known as FODMAPs — fermentable oligo-, di-, and monosaccharides and polyols. FODMAPs are found in certain grains, vegetables, fruits and dairy products. Your IBS symptoms might ease if you follow a strict low-FODMAP diet and then reintroduce foods one at a time.”

I’m laughing right now. This could not get more complicated. Uh, maybe I shouldn’t say that. Don’t want to draw attention from the diet gods, do I? At any rate, I see this as a challenge. Until I get tired, that is. Then it’s a formidable task.

Until next week,
Keep living your life!

To Eat It Or Not To Eat It

Merry Christmas… and for tomorrow, Happy Kwaanza. Oh, all right, let’s throw in Happy Chanukah although that’s already passed this year. What all these celebrations – yes, and New Year’s Eve, too – have in common is food. And food has potassium and phosphorous in it. Those are two of the electrolytes that Chronic Kidney Disease patients have to curtail.

Let’s backtrack a little bit and find out what these are. Each was included in the glossary of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

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

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

Now, let’s see if we can get a bit more information about the ill effects of having too much of either one.

This is from SlowItDownCKD 2011:

“Be aware that kidney disease can cause excessive phosphorus. And what does that mean for Early Stage CKD patients? Not much if the phosphorous levels are kept low. Later, at Stages 4 and 5, bone problems including pain and breakage may be endured since excess phosphorous means the body tries to maintain balance by using the calcium that should be going to the bones.”

And potassium? SlowItDownCKD 2012 has the answer:

“Too much potassium can cause irregular heart beat and even heart attack. This can be the most immediate danger of not limiting your potassium.”

We all have limitations on these (as well as sodium and protein) based upon our latest blood and urine lab results. Since my lab results registered normal for both electrolytes, I have pretty generous daily limitations: potassium: 3000 mg; phosphorous: 800 mg. If you’re like me, the numbers didn’t mean much.

Let’s try this another way. My husband’s traditional family Christmas dinner consists of standing rib roast, sweet potatoes baked in orange juice with marshmallow topping, string bean casserole, dinner rolls, tea or coke, and apple pie. (I added salad so there would be something I could eat.)

We’ll need a list of high potassium and high phosphorous foods before we can to analyze the meal. Luckily, there is one for phosphorus in SlowItDownCKD 2015:

HIGH PHOSPHORUS FOOD TO LIMIT OR AVOID

Beverages:
ale                                                    beer
chocolate drinks                           cocoa
drinks made with milk                dark colas
canned iced teas

Dairy Products:
cheese                                              cottage cheese

custard                                            ice cream

milk                                                 pudding

cream soups                                  yogurt

Protein:
carp                                                crayfish
beef liver                                       chicken liver
fish roe                                          organ meats
oysters                                           sardines

Vegetables:
dried beans and peas                  baked beans
black beans                                   chick peas
garbanzo beans                            kidney beans
lentils lima                                    northern beans
pork’n beans                                 split peas
soy beans

Other foods:
bran cereals                                brewer’s yeast
caramels                                      nuts
seeds                                            wheat germ
whole grain products

Now we need a list of high potassium foods. The National Kidney Foundation at https://www.kidney.org/atoz/content/potassium was helpful here. They also have a list for “Other Foods.”:

Fruits and Vegetables:
Apricot, raw (2 medium) dried (5 halves)    Acorn Squash
Avocado (¼ whole)                                           Artichoke
Banana (½ whole)                                             Bamboo Shoots
Cantaloupe                                                          Baked Beans
Dates (5 whole)                                                  Butternut Squash
Dried fruits                                                          Refried Beans
Figs, dried                                                            Beets, fresh

then boiled
Grapefruit Juice                                                  Black Beans
Honeydew                                                            Broccoli, cooked
Kiwi (1 medium)                                                 Brussels Sprouts
Mango(1 medium)                                             Chinese Cabbage
Nectarine(1 medium)                                        Carrots, raw
Orange(1 medium)                                             Dried Beans and Peas
Orange Juice                                                       Greens, except Kale
Papaya (½ whole)                                              Hubbard Squash
Pomegranate (1 whole)                                      Kohlrabi
Pomegranate Juice                                             Lentils
Prunes                                                                    Legumes
Prune Juice                                                           White Mushrooms,

cooked (½ cup)
Raisins                                                                    Okra
Parsnips

Potatoes, white and sweet
Pumpkin  

Rutabagas
Spinach, cooked
Tomatoes/Tomato products
Vegetable Juices

(Looks like my formatting is on vacation. Sorry about that, folks.)

Okay, here comes the hard part. Let’s scan the lists to see which of the foods in the dinner my husband craved are on this list. I see canned iced teas, dark colas, orange juice, and sweet potatoes. The potassium and phosphorous in one serving (?) of each is as follows:

food                                  potassium                                    phosphorous
canned iced tea                    18 mg.                                            32 mg.
dark cola                               44 mg.                                            62 mg.
orange juice                       235 mg.                                            40 mg.
sweet potatoes                   542 mg.                                            81 mg.
totals                                   839 mg.                                          215 mg.

Doesn’t look bad at all, does it? But it’s all guesswork. Is your liquid serving an ounce? Eight ounces? What about the juice in the sweet potato dish? Surely it’s not just one ounce. And maybe not eight depending upon how much of the juice is in the size portion of the sweet potato dish you had. Maybe you had seconds. Same for the sweet potatoes.

Since this is not at all a precise science, you’re better off practicing more limiting rather than less. I’m not a doctor as I keep mentioning, but I don’t see anything wrong with a just a taste or a small serving of each.

Of course, I’m not a fan of soda or any canned drink, so I get a pass on that. If you’re not sure how much of what you can eat on a daily basis, make an appointment with your renal dietician after the holidays and just enjoy today’s Christmas meal.

Hey, that doesn’t give you free reign to eat all those things expressly not on your renal diet. I know if I decide to eat some of the standing rib roast, I’m still limited to five ounces of protein a day… including the hardboiled egg I had for breakfast.

Lay.off.the.salt.shaker.too. Sodium is not your friend if you have CKD. Ask your hostess if he or she has Mrs. Dash’s seasoning or garlic powder (NOT SALT) should you be asked if you’d like the salt. Oh, was the green bean casserole made with canned, creamy soup? That’s going to up the salt content. Just another thing to be aware of when salivating at the sight of the scrumptious meal in front of you today.

I’d go really light on the hot chocolate, too, if you were planning on having some. The message here is to enjoy, but limit, those high phosphorous and potassium holiday foods you really crave.

Until next week (and next year),
Keep living your life!

Decisions, Decisions

A reader asked me how I choose the articles or studies I include in the blogs. Now you’ve got to remember that researching and I go way back. I was fortunate in that Research Writing was my favorite course to teach before I retired as a community college instructor. I loved it.

I was going to give you my take on researching when I stumbled across Dr. Alicia White’s piece on the United Kingdom’s National Health Services site at https://www.nhs.uk/news/Pages/Howtoreadarticlesabouthealthandhealthcare.aspx. She’s already written what I would have, so I’m dedicating today’s blog to that. I have not reproduced all of it only because I don’t have the room in the blog for that. Oh, those are not typos; they’re the UK spelling. Take it away, Dr. White:

If you’ve just read a health-related headline that has caused you to spit out your morning coffee (“Coffee causes cancer” usually does the trick), it’s always best to follow the Blitz slogan: “Keep Calm and Carry On”. On reading further, you’ll often find the headline has left out something important, such as: “Injecting five rats with really highly concentrated coffee solution caused some changes in cells that might lead to tumours eventually (study funded by The Association of Tea Marketing).”

The most important rule to remember is: don’t automatically believe the headline. …, you need to analyse the article to see what it says about the research it is reporting on….

Does the article support its claims with scientific research?

Your first concern should be the research behind the news article. If an article touts a treatment or some aspect of your lifestyle that is supposed to prevent or cause a disease, but doesn’t give any information about the scientific research behind it, then treat it with a lot of caution. The same applies to research that has yet to be published.

Is the article based on a conference abstract?

Another area for caution is if the news article is based on a conference abstract. Research presented at conferences is often at a preliminary stage and usually hasn’t been scrutinised by experts in the field. Also, conference abstracts rarely provide full details about methods, making it difficult to judge how well the research was conducted. …

Was the research in humans?

Quite often, the “miracle cure” in the headline turns out to have only been tested on cells in the laboratory or on animals. … Studies in cells and animals are crucial first steps and should not be undervalued. However, many drugs that show promising results in cells in laboratories don’t work in animals, and many drugs that show promising results in animals don’t work in humans. If you read a headline about a drug or food “curing” rats, there is a chance it might cure humans in the future, but unfortunately a larger chance that it won’t…..

How many people did the research study include?

In general, the larger a study the more you can trust its results. Small studies may miss important differences because they lack statistical “power”, and are also more susceptible to finding things (including things that are wrong) purely by chance. … When it comes to sample sizes, bigger is usually better. So when you see a study conducted in a handful of people, treat it with caution.

Did the study have a control group?

…. If the question being asked is about whether a treatment or exposure has an effect or not, then the study needs to have a control group. A control group allows the researchers to compare what happens to people who have the treatment/exposure with what happens to people who don’t. …

Also, it’s important that the control group is as similar to the treated/exposed group as possible. The best way to achieve this is to randomly assign some people to be in the treated/exposed group and some people to be in the control group. This is what happens in a randomised controlled trial (RCT) and is why RCTs are considered the “gold standard” for testing the effects of treatments and exposures. … Without either, retain some healthy scepticism.

Did the study actually assess what’s in the headline?

…. For example, you might read a headline that claims: “Tomatoes reduce the risk of heart attacks.” What you need to look for is evidence that the study actually looked at heart attacks. You might instead see that the study found that tomatoes reduce blood pressure. This means that someone has extrapolated that tomatoes must also have some impact on heart attacks, as high blood pressure is a risk factor for heart attacks. Sometimes these extrapolations will prove to be true, but other times they won’t. Therefore if a news story is focusing on a health outcome that was not examined by the research, treat it with a pinch of salt.

Who paid for and conducted the study?

This is a somewhat cynical point, but one that’s worth making. The majority of trials today are funded by manufacturers of the product being tested – be it a drug, vitamin cream or foodstuff. This means they have a vested interest in the results of the trial, which can potentially affect what the researchers find and report in all sorts of conscious and unconscious ways. This is not to say that all manufacturer-sponsored trials are unreliable. Many are very good. However, it’s worth seeing who funded the study to sniff out a potential conflict of interest….

Many thanks to Dr. White for her explanations.

Here we are in the middle of madness, holiday madness that is. Of course, that means we need to remind ourselves to slow down and de-stress. Exercising is one way to de-stress. We all have different ways to do that. The important thing is to do it… and stick to your renal diet if you follow one.

To those of who you celebrate Chanukah, I wish you a happy and a healthy first night tomorrow night. We’ll be lighting the Menorah along with you. It’ll be hard not to eat the chocolate gelt (money), but you can do it.

Until next week,
Keep living your life!

Giving Thanks

Thursday is the American Thanksgiving. This is what we were taught in grade school when I was a child:

“In 1621, the Plymouth colonists and Wampanoag Indians shared an autumn harvest feast that is acknowledged today as one of the first Thanksgiving celebrations in the colonies. For more than two centuries, days of thanksgiving were celebrated by individual colonies and states. It wasn’t until 1863, in the midst of the Civil War, that President Abraham Lincoln proclaimed a national Thanksgiving Day to be held each November.”

Thank you History.com at http://www.history.com/topics/thanksgiving/history-of-thanksgiving for that information.

Thanksgiving is celebrated in one form or another all over the world since it is basically a celebration of the harvest. For example, Canadians celebrate theirs on the second Monday of October since the harvest is earlier there. Then there’s China’s Mid-Autumn Moon Festival, Korea’s Chuseok, the Liberian Thanksgiving, Ghana’s Homowo Festival, and the Jewish Sukkot.

One thing all the different forms of Thanksgiving worldwide have in common is the delicious danger of overeating… and that is not good for our kidneys (no matter how scrumptious the food is). This report – which deals with just that topic – popped up on my news feed the other day. The source is Baylor College of Medicine at https://www.bcm.edu/news/kidney/overeating-holidays-bad-for-kidneys.

“‘The body absorbs nutrients from the gut and then the liver metabolizes them. Whatever is left that can’t be used by the body is excreted by the kidneys,” said Mandayam, associate professor of medicine in the section of nephrology. “The more you eat, the more you deliver to your kidneys to excrete, so eating a lot of substances that are very high in proteins or toxins can put a strain on your kidneys because they now have to handle the excess calories, toxins or proteins you’ve eaten.

During holidays like Thanksgiving, people tend to eat very heavy meals with lots of proteins and carbohydrates, and this can impact not only kidney function, but also liver, pancreas and cardiac function,’ Mandayam said.

‘When you consume carbohydrates, the body will use what is necessary for immediate energy release but any extra carbohydrates are converted into fat and stored underneath the skin and in the muscles and the liver. Similarly, when you eat a lot of fat, if the fat can’t immediately be converted into energy-producing adenosine triphosphate, then all of the fat will be stored in various fat deposits in the body,’ Mandayam explained.

‘The building up of fat inside your liver can lead to liver failure or cirrhosis, and fat inside your blood vessels can lead to heart attacks. Additionally, eating a lot of protein that your body can’t metabolize can lead to an increase in blood urea nitrogen, which adds stress on kidneys because they have to work harder to excrete this.

It is especially important for people with chronic kidney disease and kidney stones to not overeat,’ he said.

‘For people with kidney disease, even eating normal amounts of food puts stress on their kidneys,’ he said. ‘If you consume large amounts of carbohydrates, protein or fat the stress on an overworked, half functioning kidney will get even worse and can accelerate your kidney dysfunction.’”

It always made sense to me that overeating is detrimental to your health, but I was thinking in terms of obesity which could lead to diabetes which, in turn, could lead to CKD. I’ve also noticed that since I read this report, I’ve been eating less without making an effort. For years, I’ve been struggling with my weight and all I had to do is read this report????? Life is weird.

Let’s talk about carbohydrates for a minute. I instantly think of bread, all kinds of bread which is even weirder because I’ve been on a low carb diet for a while. I know, you thought of cakes and pies, didn’t you? Did you know that fruits and vegetables contain carbohydrates, too?

Hmmm, that was a revelation to me the first time I saw those charts. Now I’m wondering about excess calories. I’m limited to 1200 a day and find that this is fine with me. Bear is larger, being both male and bigger than I am, so his calorie limitations are higher. Your renal dietician can tell you what your ideal calorie count per day is if you don’t know.

So, why limit calories? Renal Medical Associates at http://renalmed.com/wp-content/uploads/2015/08/Nutrition-and-the-CKD-diet.pdf explain this succinctly:

  Why being overweight matters and what you can do about it.

We used to think that those “few extra pounds” were just dead weight. We now know that those extra pounds work together to disrupt your body’s normal functioning-with the goal of making you gain more weight. That’s why losing weight is such a difficult task.

I’m back. It’s important to limit your calorie limit so that you don’t add those extra pounds. The extra pounds not only make it more difficult to lose weight, but can lead to obesity… which can lead to diabetes… which can lead to CKD. This is starting to sound familiar, isn’t it?

If you already have CKD, the extra pounds you gain without calorie restrictions make it more difficult for your poor, already overworked and struggling kidneys to do their jobs.

What are those jobs you ask? Let’s take a look at Verywell.com at https://www.verywell.com/kidney-functions-514154 ‘s answer:

• Prevent the Buildup of Waste Products – The kidneys function as an intricate filter, removing normal waste products of metabolism, as well as toxins from the body. In the process of removing toxins, the kidneys may be damaged   by these substances.
• Regulate Fluid – Through holding on to fluids when a person is dehydrated, or eliminating excess fluids, the kidneys control fluid balance in the body.
• Regulate Electrolytes – The kidneys play an important function in electrolyte balance in the body, regulating the levels of sodium, potassium, and phosphate. This maintaining of optimal levels of electrolytes is referred to as homeostasis – or equilibrium.
• Regulate Blood Pressure – Through the production of a hormone called renin, the kidneys play an important role in regulating blood pressure. Learn more about the renin-angiotensin system.
• Regulate Production of Red Blood Cells – The kidneys produce a hormone called erythropoietin which controls the production of red blood cells in the bone marrow.
• Bone Health – The kidneys produce an active form of vitamin D which keeps the bones healthy.

Hey, it’s Thanksgiving. You can enjoy the holiday meal without overeating.

Until next week,
Keep living your life!

Feed Me

Over the years, I’ve seen advertisements for food preparation services. You know the ones that cook your meals and deliver them weekly. I would approach the people offering the service to see what they could do with the renal diet. That was a deal killer right there.

All right, I figured. Maybe what I should be doing is finding a chef who is willing to work with kidney patients rather than ask existing food preparation services to accommodate just me. I even had one chef who agreed that this is a valuable service and something she wanted to do. I was excited. Then she simply stopped emailing and answering calls. That was a couple of years ago.

I sort of gave up… until I ran into an advertisement for Clarence’s food service. I figured it was worth it to try again and called him. It was.

I explained to Clarence that I don’t permit advertising on my blog, but I would like other Chronic Kidney Disease patients to see how they can make use of food preparation services such as his. He was kind enough to write this guest blog for us. I’m hoping that this inspires you to approach a chef in your area to ask him/her if he/she is willing to provide such a service. Of course, not all of us want to have someone else prepare our meals or want to spend the money to do so, so this is a blog for that portion of readers who do.

Meal Planning for Those with Kidney Disease.
Clarence Ferguson, RTSM, CMTA, NT

Understanding your kidney disease, or renal disease, is the first step in taking control of your health. While I am not a doctor, I have aligned myself with those whose specialize in CKD so that I can adjust meals accordingly. When you have kidney disease, your kidneys are no longer able to remove waste effectively from your body or to balance your fluids. The buildup of wastes can change the chemistry of your body causing some symptoms that you can feel, and others that you don’t.

With kidney diseases, the first symptoms you may have are ones that you won’t feel but that will show up in tests that your doctor orders. Common problems are high blood pressure, anemia and weakening bones. It is important to find a kidney doctor (also called a nephrologist). And once you have your doctor’s recommendation that’s where we come in and prepare your meal according to his or her recommendations.

Okay Clarence, we know that but how do we navigate healthy eating?

Here are some suggestions for you and what I prepare for clients who struggle with CKD.

Make sure these snacks are readily available:
1. Fruit: apples, grapes, tangerines or strawberries; dried cranberries or blueberries; or packaged fruit cups with diced     peaches, pears, pineapple, mandarin oranges or mixed fruit. Make sure they are organic.
2. Low- or no-sodium microwave popcorn.
3. Low-sodium crackers, pita chips or unsalted pretzels.
4. Pouches of tuna or chicken and a side of Vegainse (a dairy free option for mayonnaise).
5. Kidney-friendly nutrition bars or liquid supplements, such as the ones from ID life, since they meet these guidelines.

What we do at Fit Body Foods
1. Compare brands. Sodium and potassium levels can vary significantly from one brand to another.
2. Look for low-sodium labels on packaging. Stock up on the lowest sodium broths, stocks and condiments.
3. Choose fresh vegetables, or frozen or canned veggies with no added salt or sodium.
4. Use only 1/4 as much of the tomato sauce and canned tomatoes that a recipe calls for to limit potassium and sodium.
5. Don’t use canned fish or chicken with added salt. All fish is fresh, so we can control the sodium levels by rinsing to reduce the sodium. Try to limit use of canned goods in general.
6. Avoid baking and pancake mixes that have salt and baking powder added. Instead, make a kidney-friendly recipe from scratch.
7. Use sweet pickles instead of dill pickles and check for added salt.
8. Check cold and instant hot cereals for sodium amounts. Although oatmeal contains more phosphorus than some cereals, it may be okay one to two times a week if phosphorus is well-controlled.
9. Check the ingredients in vinegar. Some vinegars, such as seasoned rice vinegar, contain added salt and sugar.
10. Avoid store-bought sauces and gravies that have mystery ingredients in them. Make our own instead from real-food ingredients.
11. Use homemade soup recipes, such as Rotisserie Chicken Noodle Soup, instead of pre-made or canned soups. Some soups contain more than 800 mg sodium per serving.
12. Low – and reduced – sodium broth is great for use in cooking. We save the homemade broth from stewed or boiled chicken or beef.
13. Don’t trade sodium for potassium. Some products replace salt with potassium chloride.
14. Limit nuts, seeds and chocolate as they are high in potassium and phosphorus.

We prepare food weekly and deliver to our clients on Sundays. We take the worry out of meal prep, our meals start at $7.99 a meal, and we can accommodate most palates. We can be reached for orders at: info@coachclarence.com.

Below is a sample recipe:
Cucumber-Carrot Salad
Diet types: CKD non-dialysis, Dialysis, Diabetes
Portions: 4
Serving size: 1/2 cup
Ingredients:
1/4 cup unseasoned rice vinegar
1 teaspoon sugar
1/2 teaspoon olive oil
1/8 teaspoon black pepper
1/2 cucumber
1 cup carrots
2 tablespoons green onion
2 tablespoons red bell pepper
1/2 teaspoon Mrs. Dash® Italian Medley seasoning blend

Notice there is nothing new here. We all know this information. What is appealing is having someone else, someone who understands our diet limitations, buy the food and prepare it for our meals. I explained to Clarence that our food needs as far as electrolytes change with each blood test and he agreed that it’s important to eat according to your numbers. That’s something he’s very willing to pay attention to. Should this interest you, why not approach a professional in your area to see if they can also provide such a service?Big news! SlowItDownCKD 2011 is now available on Amazon.com in both print and digital (and needs reviews: hint). SlowItDownCKD 2012 will not be far behind. These are the first and second parts of the reformatted, larger print, more comprehensively indexed The Book of Blogs: Moderate Chronic Kidney Disease, Part 1, (available only until SlowItDownCKD 2012 is published).

Until next week,

Keep living your life!

This Former Hippy Wannabe Likes HIPAA

Each day, I post a tidbit about, or relating to, Chronic Kidney Disease on SlowItDownCKD’s Facebook page. This is the quote from Renal and Urology News that I posted just a short while ago:

“Patients with stage 3 and 4 chronic kidney disease (CKD) who were managed by nephrology in addition to primary care experienced greater monitoring for progression and complications, according to a new study.”

My primary care physician is the one who caught my CKD in the first place and is very careful about monitoring its progress. My nephrologist is pleased with that and feels he only needs to see me once a year. The two of them work together well.

From the comments on that post, I realized this is not usual. One of my readers suggested it had to do with HIPPA, so I decided to look into that.

The California Department of Health Care Services (Weird, I know, but I liked their simple explanation.) at http://www.dhcs.ca.gov/formsandpubs/laws/hipaa/Pages/1.00WhatisHIPAA.aspx defined HIPPA and its purposes in the following way:

“HIPAA is the acronym for the Health Insurance Portability and Accountability Act that was passed by Congress in 1996. HIPAA does the following:

• Provides the ability to transfer and continue health insurance coverage for millions of American workers and their families when they change or lose their jobs;
• Reduces health care fraud and abuse;
• Mandates industry-wide standards for health care information on electronic billing and other processes; and
• Requires the protection and confidential handling of protected health information”

Got it. Let’s take a look at its last purpose. There is an infogram from HealthIT.gov at https://www.healthit.gov/sites/default/files/YourHealthInformationYourRights_Infographic-Web.pdf  which greatly clarifies the issue. On item on this infogram caught my eye:

“You hold the key to your health information and can send or have it sent to anyone you want. Only send your health information to someone you trust.”

I always send mine to one of my daughters and Bear… and my other doctors if they are not part of the hospital system most of my doctors belong to.

I stumbled across National Conference of State Legislatures at http://www.ncsl.org/research/health/hipaa-a-state-related-overview.aspx and learned more than I even knew existed about HIPAA. Take a look if you’d like more information. I finally tore myself away from the site to get back to writing the blog after following links for about an hour. It was fascinating, but not germane to today’s blog.

Okay, so sharing. In order to share the information from one doctor that my other doctors may not have, I simply fill out an Authorization to Release Medical Information form. A copy of this is kept in the originating doctor’s files. By the way, it is legal for the originating doctor to charge $.75/page for each page sent, but none of my doctors have ever done so.

I know, I know. What is this about doctors being part of the hospital system? What hospital system? When I first looked for a new physician since the one I had been using was so far away (Over the usual half-an-hour-to-get-anywhere-in-Arizona rule), I saw that my new PCP’s practice was affiliated with the local hospital and thought nothing of it.

Then Electronic Health Records came into widespread use at this hospital. Boom! Any doctor associated with that hospital – and that’s all but two of my myriad doctors – instantly had access to my health records. Wow, no more requesting hard copies of my health records from each doctor, making copies for all my other doctors, and then hand delivering or mailing them. No wonder I’m getting lazy; life is so much easier.

Back to HealthIt.gov for more about EHR. This time at https://www.healthit.gov/buzz-blog/electronic-health-and-medical-records/emr-vs-ehr-difference/:

“With fully functional EHRs, all members of the team have ready access to the latest information allowing for more coordinated, patient-centered care. With EHRs:

• The information gathered by the primary care provider tells the emergency department clinician about the patient’s life threatening allergy, so that care can be adjusted appropriately, even if the patient is unconscious.
• A patient can log on to his own record and see the trend of the lab results over the last year, which can help motivate him to take his medications and keep up with the lifestyle changes that have improved the numbers.
• The lab results run last week are already in the record to tell the specialist what she needs to know without running duplicate tests.
• The clinician’s notes from the patient’s hospital stay can help inform the discharge instructions and follow-up care and enable the patient to move from one care setting to another more smoothly.”

Did you notice the part about what a patient can do? With my patient portal, I can check my labs, ask questions, schedule an appointment, obtain information about medications, and spot trends in my labs. Lazy? Let’s make that even lazier. No more appointments for trivial questions, no more leaving phone messages, no more being on hold for too long. I find my care is quicker, more accessible to me, and – believe it or not – more easily understood since I am a visual, rather than an audial, person.

Kudos to American Association of Kidney Patients for postponing their National Patient Meeting in St. Petersburg from last weekend to this coming spring. The entire state of Florida was declared in a state of emergency by the governor due to the possible impact of Hurricane Irma. The very next day, AAKP acted to postpone placing the safety of its members over any monetary considerations. If I wasn’t proud to be a member before (and I was), I certainly am now.

Aha! That gives me five found days to separate The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 each into two separate books with indexes. I never was happy with the formatting of those two. I plan to reward myself after this project. How, you ask. By writing a book of short stories. I surmise that will be out next year sometime. Meanwhile, there’s always Portal in Time, a time travel romance. Geesh! Sometimes I wonder at all my plans.

Until next week,
Keep living your life!

Gluten Free

“…I started GF mid-April & my June lab work showed significant improvement. My next lab work is not until August, but I feel & look so much better, and because my BP dropped so much, my nephrologist took me off hydrochlorothorozide and reduced irbesartan from 300 to 75.” This is a small part of the message I received from a reader… and it intrigued me.

I take hydrochlorothiazide.  I know I looked it up at the time it was prescribed, something about fluid. Hmmm, it wouldn’t hurt to look it up again to refresh my (and your) memory. According to Medicinenet.com at http://www.medicinenet.com/hydrochlorothiazide/page2.htm, hydrochlorothiazide is prescribed for the following reasons:

“Hydrochlorothiazide is used to treat excessive fluid accumulation and swelling (edema) of the body caused by heart failure, cirrhosis, chronic kidney failure, corticosteroid medications, and nephrotic syndrome. It also is used alone or in conjunction with other blood pressure lowering medications to treat high blood pressure…. Hydrochlorothiazide can be used to treat calcium-containing kidney stones because it decreases the amount of calcium excreted by the kidneys in the urine and thus decreases the amount of calcium in urine to form stones….”

I didn’t recognize irbesartan specifically, although the sartan part was  familiar. According to the same source, but this time at http://www.medicinenet.com/irbesartan/article.htm, “Irbesartan is used to treat high blood pressure (hypertension) and to help protect the kidneys from damage due to diabetes. Lowering high blood pressure helps prevent strokes, heart attacks, and kidney problems. Irbesartan belongs to a class of drugs called angiotensin receptor blockers (ARBs). It works by relaxing blood vessels so that blood can flow more easily.”

Oh, of course! I’m taking losartan for the same reason. I’d had hypertension for over 20 years before I was diagnosed with Chronic Kidney Disease. Even if I hadn’t, once I was diagnosed with CKD, a drug like this would have been prescribed.  As a matter of fact, when I complained to my primary care doctor that I was taking too many pills (mostly supplements), she came up with one that combined hydrochlorothiazide and losartan.

 

 

 

 

But I digress. So, it’s a good thing that this reader no longer needs her hydrochlorothiazide since she has no swelling and that her irbesartan has been reduced since her blood vessels are becoming more relaxed. Wait a minute. Why wouldn’t every CKD patient want these results? Ah, but I’ve left something out of the equation.

She’s gone GF or Gluten Free. Ready? Here is the definition of gluten from the Oxford Dictionary at https://en.oxforddictionaries.com/definition/GLUTEN “A mixture of two proteins present in cereal grains, especially wheat, which is responsible for the elastic texture of dough.” Oh, come on. There must be more to it than that. Let’s try gluten free instead of gluten. Oh, my! NephCure at https://nephcure.org/livingwithkidneydisease/diet-and-nutrition/gluten-free-diet/

has an entire page devoted to going gluten free. But I am getting ahead of myself here.

Let’s go back to gluten, this time sources. The American Diabetes Association at http://www.diabetes.org/food-and-fitness/food/planning-meals/gluten-free-diets/what-foods-have-gluten.html  offers these lists:

What Foods Have Gluten?

Gluten is found in wheat, rye, barley and any foods made with these grains. Avoiding wheat can be especially hard because this means you should avoid all wheat-based flours and ingredients. These include but are not limited to:
White Flour
Whole Wheat Flour
Durum Wheat
Graham Flour
Triticale
Kamut
Semolina
Spelt
Wheat Germ
Wheat Bran

Common foods that are usually made with wheat include:
Pasta
Couscous
Bread
Flour Tortillas
Cookies
Cakes
Muffins
Pastries
Cereal
Crackers
Beer
Oats (see the section on oats below)
Gravy
Dressings
Sauces
This may seem like a long list, but there are still plenty of gluten-free foods out there! Choose from many fresh, healthy foods like fruits, vegetables, beans, dairy, nuts and gluten-free grains like quinoa or rice. There are also gluten-free versions of many of the foods above available in most grocery stores. You just have to look for them!

Gluten Surprises
You may not expect it, but the following foods can also contain gluten:
broth in soups and bouillon cubes
breadcrumbs and croutons
some candies
fried foods
imitation fish
some lunch meats and hot dogs
malt
matzo
modified food starch
seasoned chips and other seasoned snack foods
salad dressings
self-basting turkey
soy sauce
seasoned rice and pasta mixes
There are also many additives  and ingredients in packaged foods that may contain gluten. Always check labels and ingredient lists for these. For a more comprehensive list of gluten-containing additives, contact your local celiac support group.

Other Tips to Remember
Don’t forget that ingredients in food products change frequently, so always check the label before buying packaged foods. Remember that “wheat-free” does not automatically mean “gluten-free.” While a product may not contain wheat, it can still contain rye or barley in some form. If you have any question about whether a food contains gluten, contact the manufacturer directly.

The Fuss About Oats
Pure oats are a gluten-free food, but most commercially processed oats have been contaminated during the growing, harvesting or processing stages. In the past, many experts recommended completely avoiding oats  those on a gluten-free diet in addition to wheat, barley, and rye. Now, some oats are grown and processed separately, and can be labeled “gluten-free.”

I see an awful lot of the same foods to avoid on this list as I do on the renal diet. I wonder if that would make it easier to go gluten free if you decide to?

Phosphorous! Aha. We, as CKD patients, need to limit our phosphorous intake. Have you noticed that many of these foods are high phosphorous? Is it possible that the gluten free diet will help us with our renal diets? I’m not suggesting that you go gluten free and I’m not suggesting that you don’t. I am saying the idea is, well, intriguing.

Before I forget: SlowItDownCKD has been chosen as one of Healthline’s top kidney disease blogs for 2017. Second year in a row!!!!! AND I’ve lowered the price of all five of my digital kidney books to $2.99 to spread the awareness of CKD out there more effectively. Oh, yes, you can still get them for free on Kindle Unlimited.

Until next week,

Keep living your life!

 

 

Here, There, and Everywhere

I was thinking about the AAKP Annual National Meeting coming up in September. You see, I’ve never been to one. Years ago, when I first started writing about Chronic Kidney Disease a reader asked if I’d be there. I was almost a decade younger then and had lots on my plate: teaching college classes, acting, writing, being an active mother, and getting used to my new diagnose. I had no time to run off to meet a bunch of people with the same disease. I didn’t even know anyone there!

Yep, things have changed for me. I’ve retired from both education and acting as of 2013, my children are out of the house although we still have almost daily contact, and I’m better at dealing with CKD. So I’m going. I thought you might like to know something about this group since it was started by patients for patients.

AAKP is the acronym for the American Association of Kidney Patients. I am flabbergasted that six patients in Brooklyn, New York, started this group in 1969 while they were undergoing dialysis and that today AAKP reaches one million people at all stages of kidney disease. I’m a member as of last week. Did I mention that membership is free? This year’s meeting will be in St. Petersburg, Florida from September 8th to the 10th.

I also shied away because I thought they’d have nothing to offer me since I’m stage 3 and the association was started by dialysis patients. I was wrong. Some of the General Sessions deal with national policy and kidney disease, innovations in kidney disease care, patient centered kidney disease care, and the kidney friendly diet. This is not all of them, just the ones I’m interested in.

The smaller Breakout Sessions that might interest others in the early or moderate stages of CKD are social media, dental health, clinical trials, staying active, veterans’ health, lab values, and vaccinations. But that’s not all: there’s even lunch with the experts on the first two days. The topics range from transplant, caregiver, advocacy, cooking, and support groups to acute kidney injury. I mentioned those areas that interest me, but there’s more, far more.

Before I start to sound like I’m selling you a product, here’s their web site so you can explore this association and national meeting for yourself: https://aakp.org.

Let’s say you don’t want to travel. How else can you partake of the kidney patient world, the part of it that doesn’t deal with going to the nephrologist or renal dietician? Well, have you heard of Renal Support Network at http://www.rsnhope.org/? Lori Hartwell has had kidney disease since she was two years old and wanted to instill hope in those with the disease. Now you understand the URL. There are also podcasts about kidney disease at http://www.rsnhope.org/kidneytalk-podcast/ or you can go through the menu on their home page.

Here’s something you can do to help other kidney patients and maybe, just maybe, see your work in print.

Calling all Storytellers who have kidney disease, Share your Experience!

Enter RSN’s 15th Annual Essay Contest.
This year’s theme is “Describe a positive decision that you have made about your healthcare.”
First Prize: $500, Second Prize: $300, Third Prize: $100
Winning essays will be published on RSNhope.org and in Live&Give newsletter

Lori was especially helpful to me when I was first starting out in CKD awareness advocacy. I think you’ll find something of interest to you on her website, although I’ll bet it won’t be the same something for any two people. What I especially like is the Health Library with articles on varied subjects.

Further afield, The Bhutan Kidney Foundation is doing an Amazonian job of spreading kidney disease awareness. I am constantly reading about their walks and educational meetings, as well as governmental initiatives. I think they may even have a Facebook page. Let me go check. Hi again. I’m back and they do.

Have you heard of Mani Trust? This is an India based group that strives to provide humanitarian help to individuals and their country, including those suffering from kidney disease. We know this is not a Western-part-of-the-world-only problem, but I wonder if we realize just how widespread it is.

Remember I told you about the CKD awareness presentation I offered at a global conference several weeks ago? I found astounding facts from World Life Expectancy at http://www.worldlifeexpectancy.com. One of the most striking facts I included in that presentation is that globally 864,226 people  died of kidney disease last year. That makes kidney disease number 15 in the cause of death hit parade.

In Malaysia, there were 2,768 deaths due to kidney disease, over 2% of the country’s total population. In Albania, there were 443, that’s also close to 2% of the country’s total population. Ghana had 2,469 deaths, which is 1.3%.  Egypt? 15,820, which is almost 3½ %. Here in the United States, there were 59,186 deaths, which is almost 3% of our population. What’s my point?

Kidney disease is a global problem. I don’t know what I can do to help in other countries in other parts of the world, but I do know what I can do to help here… and what you can do to help here. If you’re able to, attend the national meetings and local conferences about kidney disease and spread whatever new information you’ve learned. If you are unable to travel, keep your eye on the Facebook kidney disease pages which often have files and delve into them. Share this information, too. If you don’t travel and you’re not on a computer, register for mailing lists and share information from them, too. Of course, check everything you read with your nephrologist before you share and use the advice yourself.

 

You’ll find a blog roll – a list of kidney care and awareness organizations – on the right side of my blog. Why not explore some of these and see which ones appeal to you? If you like them, you’ll read them. And, hopefully, if you read them, you’ll share the information. According to the latest CDC findings, more than one out of every seven people in the United States has CKD. Let’s try to change those figures. By the way, you can read more about this at https://www.cdc.gov/diabetes/pubs/pdf/kidney_factsheet.pdf.

Until next week,
Keep living your life!

CKD and the VA or It’s Not Alphabet Soup at All

Today is Memorial Day in the United States. It is not a day to say Happy Memorial Day since it is a day commemorating those who gave their lives for our freedom. Lots of us have bar-b-ques or go to the park or the beach to celebrate. No problem there as long as we remember WHO we are celebrating. I promise: no political rant here, just plain appreciation of those who serve(d) us both living and dead. Personally, I am honoring my husband, my step son-in-law, and all those cousins who just never came home again.

I explained the origins of this day in SlowItDownCKD 2015 (May 25), so won’t re-explain it here. You can go to the blog and just scroll down to that month and year in the drop down menu on the right side of the page under Archives. I was surprised to read about the origins myself.

We already know that Chronic Kidney Disease will prevent you from serving your country in the military, although there are so many other ways to serve our country. This is from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

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

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

‘Current or history of acute (580) nephritis or chronic (582) Chronic Kidney Disease of any type.’

Until this date, Chronic Kidney Disease was not mentioned.”

You can read the entire list of The Department of Defense’s Instruction for Medical Standards for Appointment, Enlistment, or Induction in the Military Services at http://dtic.mil/whs/directives/corres/pdf/613003p.pdf. You’ll also find information there about metabolic syndrome, high blood pressure, high cholesterol, diabetes, and pre-diabetes as conditions for non-enlistment.

This got me to thinking. What if you were had already enlisted when you developed CKD. Yes, you would be discharged as medically unfit, but could you get help as a veteran?

According to the Veterans Administration at https://www.research.va.gov/topics/Kidney_disease.cfm#research4,

“In 2012, VA and the University of Michigan began the work of creating a national kidney disease registry to monitor kidney disease among Veterans. The registry will provide accurate and timely information about the burden and trends related to kidney disease among Veterans and identify Veterans at risk for kidney disease.

VA hopes the kidney disease registry will lead to improvements in access to care, such as kidney transplants. The department also expects the registry will allow VA clinicians to better monitor and prevent kidney disease, and will reduce costs related to kidney disease.”

That’s what was hoped for five years ago. Let’s see if it really came to fruition.

Oh, this is promising and taken directly from The U.S. Department of Veterans Affairs.

“VA eKidney Clinic

The VA eKidney Clinic is now available! The eKidney Clinic offers patient education through interactive virtual classrooms where Veterans can learn how to take care of their kidneys and live a good life with kidney disease. Please visit the VA eKidney Clinic website or click on the picture below. For additional information see the eKidney Clinic Patient Information Brochure.”

The Veterans Health Administration doesn’t just provide information, although I must say I was delighted to see the offer of Social Work Services. There is also treatment available. Notice dialysis mentioned in their mission statement.

Mission: The VHA Kidney Program’s mission is to improve the quality and consistency of healthcare services delivered to Veterans with kidney disease nationwide. The VHA Kidney Program provides kidney-related services to dialysis centers throughout VA’s medical centers. Professional guidance and services are available in the form of consultation and policies developed by VA kidney experts. These experts are dedicated to furthering the understanding of kidney disease, its impact on Veterans, and developing treatments to help patients manage disease symptoms. In addition, the VHA Kidney Program provides VA healthcare professionals with clinical care, education, research, and informatics resources to improve healthcare at local VA dialysis facilities.”

I did find it strange that there was a cravat on the Veterans Administration site that they do not necessarily endorse the VHA Kidney Program, especially since it is so helpful.

 

 

 

How involved is the VA with CKD patients? Take a look for yourself at this 2015 statistics by going to https://www.va.gov/HEALTH/services/renal/documents/Kidney_Disease_and_Dialysis_Services_Fact%20Sheet_April_2015.pdf

  • All Veterans enrolled in VA are eligible for services, regardless of service connection status
  • Enrolled Veterans can receive services from the VA or from community providers under the Non-VA Care Program if VA services are unavailable
  • 49 VA health care facilities offer kidney disease specialty care (nephrology services)
  • 96 VA facilities offer inpatient and/or outpatient dialysis; 25 centers are inpatient-only. Of the 71 VA outpatient dialysis centers, 64 are hospital based units, 2 are joint VA/DoD units, 4 are freestanding units, and one is within a community based outpatient clinic (CBOC)
  • VA enrollees must be offered the option of home dialysis provided either directly by the VA or through the Non-VA Care Program
  • 36 outpatient hemodialysis centers offer home dialysis care directly.
  • 5 VA medical centers host kidney transplantation programs.
  • VA Delivered Kidney Care (Calendar Year 2013) 13,794 Unique Veterans receiving dialysis paid for by VA; representing an annual increase of 13% since 2008. 794 Veterans received home dialysis; 55percent (434) by VA facilities and 45percent (360) under the Non-VA Care Program.
  • Increasing use of telehealth services to increase Veteran access to kidney specialty care Secure messaging: 7,319 messages, Clinical video telehealth: 4,977 encounters
  • VA Kidney Research (FY ’14) the research budget for the study of kidney disease has been $18.5 million per year for the past 5 years (FY ’10-FY ’14). The VA Cooperative Studies Program has supported national clinical trials addressing the best treatment of Veterans with CKD since at least 1998.

It seems to me our veterans are covered. Now if we could only make sure the rest of us stay covered no matter what bills the current administration signs into law.

Until next week,

Keep living your life!

So That’s How It’s Decided

SlowItDownCKD’s being honored as one of the best kidney disease blogs for 2016 has had some interesting results.  The first was the health and food writer’s guest blog about hydration for Chronic Kidney Disease on March 6th. Then it was the guest blog by the Social Security Administration’s Outreach Director. This week, it’s a telephone interview with Dr. Michael J. Germain, a nephrologist from Massachusetts, about some of the suggested guidelines in the upcoming KDIGO for 2016.

Got it:  backtrack. Let’s start with KDIGO. This stands for KIDNEY DISEASE | IMPROVING GLOBAL OUTCOMES. Their homepage at KDIGO.org states, “KDIGO MISSION – Improving the care and outcomes of kidney disease patients worldwide through the development and implementation of global clinical practice guidelines.” Anyone up for visiting their offices? What an excuse to go to Belgium!

Okay, now we know what the organization is and what it does, but why Dr. Germain? I asked the same question. Although he is not on the KDIGO panel of doctors who decide what the next year’s development and implementation will be, he is well versed with the topic having published or having been part of the writing for an overwhelming number of articles in such esteemed journals as the American Journal of Kidney Disease, Kidney International, and The Clinical Journal of the American Society of Nephrology, as well as contributing to textbooks, … and he could simplify the medicalese in the guidelines to simple English for this lay person.

If you think I remind you quite often that I’m not a doctor, you should read my emails to our liaison. State I’m not a doctor, repeat, state I’m not a doctor, repeat. She had the good graces to laugh at my insecurities.

The latest guideline updates have not been released yet, so both the good doctor (over 40 years as a nephrologist) and I (CKD patient and awareness advocate for a decade) were working off the draft that was released last August.

Dr. Germain also made it a point to ensure that I understand the guidelines are based upon expert opinion, not evidence. That made sense to me since he is not only a patient seeing nephrologist, but also a research nephrologist – to which his numerous publications will attest. With me being a lay person, he “had a lot of ‘splaining to do.” I had to admire his passion when discussing the vitamin D guidelines.

In the draft guidelines, it was suggested that hypercalcemia be avoided. I know; it’s a new word. We already know that hyper is a prefix meaning over or too much; think excessive in this case. Calcemia looks sort of like calcium. Good thinking because, according to Healthline at http://www.healthline.com/health/hypercalcemia:“Hypercalcemia is a condition in which you have too high a concentration of calcium in your blood. Calcium performs important functions, such as helping keep your bones healthy. However, too much of it can cause problems….”

This excerpt from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease explains how calcium works with vitamin D and phosphorous.

“The kidneys produce calcitrol which is the active form of vitamin D. The kidneys are the organs that transfer this vitamin from your food and skin [sunshine provides it to your skin] into something your body can use. Both vitamin D and calcium are needed for strong bones. It is yet another job of your kidneys to keep your bones strong and healthy. Should you have a deficit of Vitamin D, you’ll need to be treated for this, in addition for any abnormal level of calcium or phosphates. The three work together. Vitamin D enables the calcium from the food you eat to be absorbed in the body. CKD may leech the calcium from your bones and body.”

The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 offers us more information.

“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. …  Thanks to MedLine Plus at http://www.nlm.nih.gov/medlineplus/ency/article/003690.htm .”

As Dr. Germain explained, CKD patients break down vitamin D quickly since they have more of a catabolic enzyme, the enzyme that converts the vitamin D to an inactive form. Oh, right, catabolic means “any destructive process by which complex substances are converted by living cells into more simple compounds, with release of energy” according to Dorland’s Medical Dictionary for Health Consumers.

Here’s the problem: vitamin D can cause hypercalcemia. Dr. Germain phrased it, “In fact, the draft guideline recommends active vitamin D hormone therapy not to be routinely used in patients with CKD stage 3 or 4 due to increased risk of hypercalcemia and the lack of efficacy shown in studies.” Therefore, he urges nephrologists to wait until stage 4 or 5 to recommend vitamin D since hyperparathryoidism may lead to bone damage. But just as in any disease, it is harder to treat bone damage once it’s already there. His recommendation: Ask about your parathyroid level every three to six months and discuss the results of your tests with your nephrologist. By the way, his feeling – and obviously mine – is that preserving the kidney function is the most important job of the nephrologist and the patient.

I am eager to see the guidelines published so I can write more about them. The conclusion about vitamin D is based upon what nephrologists have seen in their practices since the last set of KDIGO guidelines were published in 2009. It will affect the way our nephrologists speak with us about our treatment, just as the other guidelines for 2016 will.

That will affect the way we self-manage. For example, I restrict my sun time to 15 minutes a day based on these findings. Take a look at how you self-manage. It should bring up a list of questions for you to ask your nephrologist at your next appointment.

You should also know the KDIGO deals with all stages of CKD including End Stage CKD and pediatric CKD.

Until next week,

Keep living your life!

Yet Another Possibility

Today we have yet another fitness plan? Weight loss plan? Health plan? Beauty plan? I don’t know what to call it since they offer so many different types of products. What’s that, you ask. It’s called Wakaya Perfection. It seems a great number of my friends and acquaintances have been involved in their health in this way recently. They, however, do not have Chronic Kidney Disease.

Let’s get this part out of the way: I want to go there. Yes, there. Wakaya is not only a company, but an island in the South Pacific and it.is.beautiful. Take a look at their website (wakayaperfection.com) so you can see for yourself… but, of course, that’s not what this blog is about.

The company has several different lines, so I decided to look at one product from each to evaluate them for CKD patients. Remember, should they not be viable options for CKD patients does not mean they’re not viable for those without CKD.

Let’s start with the weight loss products since that’s what’s on my mind lately. That would be the Bula SlimCap. This is what their website has to say about these caps:

“At Wakaya Perfection, when we say all natural, that is exactly what we mean. Our tropical flavors are:

  • Sugar Free
  • Fat Free
  • Gluten Free

And Contain:

  • NO Artificial Flavors, Ingredients or Colors
  • NO Monosodium Glutamate (MSG)
  • NO Insect or Animal Matter
  • NO Growth Hormones
  • NO Antibiotics
  • NO Herbicides or Pesticide

That sounds great and appeals to me. Wait a minute, natural is good, but what is it that’s natural? I couldn’t find an ingredient list other than this:

  • All Natural Flavors
  • Active Ingredients
  • Pink Fijian Ginger
  • Stevia Reb-A 98%
  • Quick Dissolve Blend

What makes it a quick dissolve blend? What are the all natural flavors? What are the active ingredients? Ginger is permissible for CKD patients, but how much ginger is in each cap? And as for Stevia Reb-A 98%, this is a warning I found on New Health Guide at http://www.newhealthguide.org/Stevia-Side-Effects.html: “The FDA has noted that stevia may have a negative impact on the kidneys, reproductive, cardiovascular systems or blood sugar control.” Uh-oh, they mentioned our kidneys.

Oh well, that’s only one product and maybe there’s some other source of ingredients somewhere. Hmmm, I’d want to know what’s in a product and how much of each ingredient is in it before I took it, especially with CKD on my plate.

Let’s switch to a fitness product. I stayed away from the protein shake meal replacements for the reasons I explained about such products in SlowItDownCKD 2016. This is the poignant part of that blog:

“Ladies and gentlemen, our protein intake is restricted because we have CKD. Why would we take a chance on increasing the protein in our bodies? Here’s a reminder from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease about why we need to limit our protein.

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

Why don’t we take a look at the BulaFit Burn Capsules? Wakaya Perfection describes them as,

“A potent combination of herbs and extracts that help you manage appetite/cravings while providing sustained energy and heightened focus throughout your day. BulaFIT BURN™ is designed to help boost fat burning and provide a sense of wellbeing that reduces cravings for food and snacking.

When combined with a healthy diet and exercise, BURN capsules promote a sense of well being and energy that reduces cravings for food and snacking. BURN can also play an important role in increasing the results of ketosis and even avoiding the ‘keto flu’ that some people may experience with other ketogenic programs.”

Huh? What’s keto flu? I figured a site with the name Keto Size Me (http://ketosizeme.com/keto-flu-101-everything-need-know/) could help us out here… and they did. “The ‘keto flu’ is what we commonly call carbohydrate withdrawal symptoms. These symptoms usually occur in people who start a low carb diet that alters their hormones and causes and electrolyte imbalances.”

Wait! Electrolyte imbalances? But we work so hard with the renal diet trying to keep these within the proper range for CKD. I went back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for a little reminder about electrolytes.

“In order to fully understand the renal diet, you need to know a little something about electrolytes. There are the sodium, potassium, and phosphate you’ve been told about and also calcium, magnesium, chloride, and bicarbonate. They maintain balance in your body….Too much or too little of a certain electrolyte presents different problems.”

Nope, not me. I’m keeping my electrolytes right where they belong. This is not looking good for the Chronic Kidney Disease patient. I vote no; you, of course, have to make up your own mind.

News of a local opportunity: This year’s first Path of Wellness Screening will be Saturday, June 17th at the Indo American Cultural Center’s community hall, 2809 W. Maryland Ave., Phoenix, AZ 85017. The free screening events can process up to 200 people.  Their use of point-of-care testing devices provides blood and urine test results in a matter of minutes, which are reviewed onsite by volunteer physicians.  All screening participants are offered free enrollment in chronic disease self-management workshops.  Help is also given to connect participants with primary care resources.  The goals of PTW are to improve early identification of at-risk people, facilitate their connection to health care resources, and slow the progression of chronic diseases in order to reduce heart failure, kidney failure and the need for dialysis.

Until next week,

Keep living your life!

Just Blend In

Well, if that doesn’t beat all! Here I thought I was juicing until a reader asked me if my nephrologist knew the difference between juicing and blending. There’s something called blending? Let’s get my doctor out of the equation right away. He may or may not know the difference between the two, but I certainly didn’t.

I heard juicing and just assumed (and we all know what happens when we assume) it meant tossing 80% vegetables – since this was prescribed for fast weight loss – and 20% fruits in the blender. Hmmm, the name of the machine I used should have tipped me off that there was a difference, but it went right over my head.

Let me tell you what I learned. Juice, according to Dictionary.com at http://www.dictionary.com/browse/juicing, is: “the natural fluid, fluid content or liquid part that can be extracted from a plant or one of its parts…” while juicing is “to extract juice from.” Uh-uh, I wasn’t doing that. There was no pulp left after the vegetables and fruits were processed in the blender. It all sort of mushed – oh, all right – blended together.

The same dictionary tells me blending is: “to mix smoothly and inseparably together.” Yep, that’s what I’ve been doing. By the way, for those of you who asked to be kept posted about any weight loss, I’ve lost five pounds in ten days. To be perfectly candid, there was one day of I’m-going-to-eat-anything-I –want! mixed in there.

Another CKD Awareness Advocate wondered just what I was doing to my electrolyte limits while on this blending (I do know that’s what it is now.) diet. I arbitrarily chose a recipe from a juicing book I got online before I realized I wasn’t juicing. The recipe called for:

2 beets (what a mess to peel and chop)

2 carrots (I used the equivalent in baby ones since my hands were already starting to hurt from dealing with the beets)

8 strawberries

7 leaves of kale – which I learned is also called Tuscan cabbage

I added a cup of water since I wasn’t taking any pulp out, so the mixture was really thick.

All the ingredients were on my renal diet. So far, so good. But the question was about my daily electrolyte limits. My limits are as follows (Yours may be different since the limits usually are based upon your most current labs.):

Calories – 2100

Potassium – 3000 mg.

Phosphorous – 800 mg.

Protein – 5 ounces (141,748 mg.)

Sodium – 2000 mg.

Nutritional Data at http://nutritiondata.self.com/facts/vegetables-and-vegetable-products/2348/2 tells me I drank this much of each of those electrolytes in the total of two drinks I had of this concoction… I mean blend. The measurement is milligrams and each drink replaces a meal.

 

 

Protein Phosphorus
Beets  1300   33
Carrots  2700   42
Kale  2200   38
Strawberries  1000   37
Totals  7200 150

 

 

 

Potassium

 

 

Sodium

Beets   267  1300
Carrots   359   2700
Kale   299  2200
Strawberries   233   1000
Totals  1158  7200

 

 Calories
Beets    33
Carrots    42
Kale    38
Strawberries    37
Totals   150

I had to backtrack a little to figure out that 8 baby carrots is the equivalent to 2/3 of a cup or a little over five oz. Thanks to http://www.fruitsandveggiesmorematters.org/how-much-do-i-need for the help there. They were also the source I used to verify that 8 large strawberries equal 1 cup or 8 oz.

The calculations were the hardest part of this blog for me. I rounded up whenever possible. Also, keep in mind that different sites or books may give you different approximations for the electrolytes in the different amounts of each different food you blend. I discovered that when I was researching and decided to stick with the simplest site for me to understand.

So, did I exceed my limits? I am permitted three different vegetables per day with a serving of half a cup per vegetable. There are only three vegetables in this recipe. I did go over ½ cup with the all of them, yet am under my limitations for each of the electrolytes. This is complicated. As for the fruit, I am also allowed three different ones with ½ cup limit on each. Or can I count the one cup of strawberries as two servings of today’s vegetables? Welcome to my daily conundrum.

Over all, I still have plenty of electrolytes available to me for my third meal today, which is to be a light meal of regular foods (provided they’re on my renal diet). I also have two cups of coffee a day which has its own numbers:

Protein  Phosphorus Potassium  Sodium   Calories

6000              14                232               9               4

Add those in and I still have plenty of food available to me with the electrolytes within the balance limits. The funny part is that I’m not hungry for hours after one of the blended drinks and, bam! all of a sudden I’m ravenous. I usually have the light meal mid-day so I’m not still digesting at bedtime. This is really important: on that I’m-going-to-eat-anything-I –want! day, I was hungier and hungier the more I ate and didn’t recognize when I was full.

The nice part about blending is that the fiber is still in the mixture. Fiber is necessary for a multitude of reasons when you’re a CKD patient. DaVita at https://www.davita.com/kidney-disease/diet-and-nutrition/diet-basics/fiber-in-the-kidney-diet/e/5320 lists those reasons for us:

Benefits of fiber

Adequate fiber in the kidney diet can be beneficial to people with chronic kidney disease (CKD) because it:

  • Keeps GI (gastrointestinal) function healthy
  • Adds bulk to stool to prevent constipation
  • Prevents diverticulosis (pockets inside the colon)
  • Helps increase water in stool for easier bowel movements
  • Promotes regularity
  • Prevents hemorrhoids
  • Helps control blood sugar and cholesterol

Our fourth anniversary is Thursday. We have had numerous health problems to deal with since that date, BUT we’ve also had numerous opportunities for fun…and we’ve taken each one. Did I ever tell you we had the ceremony at 4 p.m. in our backyard and the reception at 6 p.m. in order to help us remember the date? 4/6 = April 6th. Get it?

Anyway, any help offered to make the blending and a light meal work on Saturday when we’ll be celebrating by attending the Phoenix Film Festival (http://www.phoenixfilmfestival.com/) all day and night will be gratefully accepted. Bring your copy of one of my books. I’ll gladly sign it for you.

Until next week,

Keep living your life!

Women and Water (Men, too)

Welcome to March: National Kidney Month and Women’s History Month. I’m going to fudge a bit on the ‘History’ part of that as I did last month with Black History Month. I don’t often have guest bloggers, but this month will feature two women as guest bloggers in honor of Women’s History Month. The first is Jessica Walter, who sent me the following email last month:

Hi There,

I am a freelance health and food writer, I have teamed up with a small senior lifestyle advice site, I worked with them to develop a complete guide on how to eat better and be healthier from a dietary point of view. This includes detailed information on why being hydrated is so important. … you can check out the article here:

https://www.senioradvisor.com/ blog/2017/02/7-tips-on- developing-better-eating- habits-in-your-senior-years/.

I liked what Jessica had to say and how easily it could be adapted not only for senior Chronic Kidney Disease patients, but all Chronic Kidney Disease patients.

In addition, she sent me this short article about hydration and CKD. It’s easy to read and has some information we constantly need to be reminded of.

Staying Hydrated When You Have Chronic Kidney Disease

We all know that drinking water is important for our health, and monitoring fluid intake is critical for those with chronic kidney disease. Too much water can be problematic, but so can too little. Dehydration can be serious for those with chronic kidney disease. If you are suffering from vomiting, diarrhea, fever, or diabetes, or if you urinate frequently, you may become dehydrated because you are losing more fluid than you are taking in. For those without chronic kidney disease, the solution is to increase the intake of water until the body is sufficiently hydrated.

Since dehydration can decrease blood flow to the kidneys, and as fluid intake must be controlled in patients with chronic kidney disease, it’s important to closely monitor their fluid intake and loss in these circumstances.

Recognizing The Signs

The first step is to recognize the physical signs of dehydration. You may have a dry mouth or dry eyes, heart palpitations, muscle cramps, lightheadedness or fainting, nausea, or vomiting. You may notice a decrease in your urine output. Weight loss of more than a  pound or two over a few days can also be an indicator of dehydration. If you are taking ACE inhibitors and ARBs, such as lisinopril, enalapril, valsartan, or losartan, or water pills or diuretics, these medications can harm your kidneys if you become dehydrated. It is doubly important to be aware of signs of dehydration if you are on any of these medications.

Steps to Take

To rehydrate your body, start by increasing your intake of water and ensure that you are eating plenty of fruits and vegetables. (Me here: remember to stay within your renal diet guidelines for fruits, vegetables, and fluids.)If you cannot keep water down, or if increased consumption doesn’t alleviate the signs of dehydration, contact your health care provider  immediately.

They may also recommend a different fluid than plain water since electrolytes and minerals can also be reduced if you are dehydrated, but you may still need to watch your intake of potassium, phosphorus, protein, and sodium. Your doctor may recommend an oral rehydration solution that will restore your body to a proper level of hydration. If you have a fluid restriction because you are on dialysis, you should consult your healthcare provider if you have issues with or questions about hydration. Taking in or retaining too much fluid when you have these restrictions can lead to serious complications, including headaches, swelling, high blood pressure and even stroke. Carefully monitoring your fluid intake and watching for signs of dehydration will help you to avoid the consequences of dehydration.

I’ve blogged many times over the last six years about hydration. I’m enjoying reading this important material from another’s point of view. I’m sorry Jessica’s grandmother had to suffer this, but I’m also glad Jessica chose to share her writing about it with us.

 

This June, 2010, article included in The Book of Blogs: Moderate Chronic Kidney Disease, Part 1 furthers explains:

“.…Dr. HL Trivedi of the Institute of Kidney Diseases and Research Centre (IKDRC) said, ‘…. Rapid water loss causes the kidney’s functioning to slow down, resulting in temporary or permanent kidney failure.’

Extreme heat causes rapid water loss, resulting in acute electrolyte imbalance. The kidney, unable to cope with the water loss, fails to flush out the requisite amount of Creatinine and other toxins from the body. Coupled with a lack of consistent water intake, this brings about permanent or temporary kidney failure, explain experts.”

The article can be viewed directly at http://www.dnaindia.com/health/report_heat-induced-kidney-ailments-see-40pct-rise_1390589 and is from “Daily News & Analysis.”

The CDC also offers advice to avoid heat illness:

“People with a chronic medical condition are less likely to sense and respond to changes in temperature. Also, they may be taking medications that can worsen the impact of extreme heat. People in this category need the following information.

  • Drink more water than usual and don’t wait until you’re thirsty to drink.
  • Check on a friend or neighbor, and have someone do the same for you.
  • Check the local news for health and safety updates regularly.
  • Don’t use the stove or oven to cook——it will make you and your house hotter.
  • Wear loose, lightweight, light-colored clothing.
  • Take cool showers or baths to cool down.
  • Seek medical care immediately if you or someone you know experiences symptoms of heat-related illness(http://www.cdc.gov/extremeheat/warning

It’s clear we need to keep an eye on our hydration. While we’re doing that, keep the other eye out for SlowItDownCKD 2016 purposely available on World Kidney Day on Amazon.

Until next week,

Keep living your life!

The Three Musketeers

I was in Cuba last week with very sketchy internet, so it was not possible to post a blog. But for now, I was thinking about a friend – you know, one of those Facebook friends you pic_backbone_sidenever met but you feel an instant kinship with – who told me that her surgeon warned her that her recovery from the spinal fusion surgery she’d recently had would be slow because she has Chronic Kidney Disease.

CKD…bone healing. Let’s start slowly and work this one out.  First of all, what do the kidneys have to do with your bones?

I turned to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for some answers.

FullSizeRender (2)“Both vitamin D and calcium are needed for strong bones. It is yet another job of your kidneys to keep your bones strong and healthy….Vitamin D enables the calcium from the food you eat to be absorbed in the body. CKD may leech the calcium from your bones and body….Be aware that kidney disease can cause excessive phosphorus. And what does that mean for Early Stage CKD patients? Not much if the phosphorous levels are kept low. Later, at Stages 4 and 5, bone problems including pain and breakage may be endured since excess phosphorous means the body tries to maintain balance by using the calcium that should be going to the bones.”

Whoa! Each one of those thoughts needs at least a bit more explanation. Let’s start with the jobs of the kidneys. The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 has a paragraph that mentions some of them. I turned it into a list to make it more visual.

“Our kidneys are very busy organs, indeed.  They produce urine, remove potentially harmful waste products from the blood, aid in the maintenance of the local environment around the cells of the body, kidneys5

help to stimulate the production of red blood cells, regulate blood pressure, help regulate various substances in the blood {For example, potassium, sodium, calcium and more}, help to regulate the acidity of the blood, and regulate the amount of water in the body. Mind you, these are just their main jobs.”IMG_2982

Another of those various substances in the blood they help to regulate is phosphorous. That’s where one of the connections between CKD and your bones lies. If your phosphorous is not being correctly regulated by your kidneys (since your kidneys are impaired), yes you do experience pain and broken bones, but did you notice that your body also diverts your necessary-for-bone-health calcium to regulate the other substances in your blood?

I wanted to know more about phosphorous so I turned to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2. I got a chuckle from seeing that I’d quoted from my first book in explaining how phosphorous works. I’d forgotten about that.

sparkling teeth“This is the second most plentiful mineral in the body and works closely with the first, calcium. Together, they produce strong bones and teeth. 85% of the phosphorous and calcium in our bodies is stored in the bones and teeth.  The rest circulates in the blood except for about 5% that is in cells and tissues…. Phosphorous balances and metabolizes other vitamins and minerals including vitamin D which is so important to CKD patients. As usual, it performs other functions, such as getting oxygen to tissues and changing protein, fat and carbohydrate into energy.”

FullSizeRender (3)

Talk about multi-tasking. Let’s focus in on the calcium/phosphorous connection. Kidney Health Australia at http://kidney.org.au/cms_uploads/docs/calcium-and-phosphate-balance-fact-sheet.pdf explained this succinctly:

“When your kidney function declines, you are unable to get rid of excess phosphate. (Me here: that’s what we call phosphorous except when dealing with inorganic chemistry.)  The phosphate builds up in your body and binds to calcium, which, in turn, lowers your calcium levels. When your calcium levels get too low, glands in bloodyour neck (called the parathyroid glands) pull the extra calcium your body needs out of your bones. This can make your bones easy to break. The bound phosphate and calcium get deposited in your blood vessels. It can increase your risk of heart disease and stroke. It can also cause skin ulcers and lumps in your joints.”

So where does vitamin D come in? As was mentioned in SlowItDownCKD 2015,

“’Vitamin D: Regulates calcium and phosphorous blood levels as well as promoting bone formation, among other tasks – affects the immune system.’ We know vitamin D can be a real problem for us.  How many of you are taking vitamin D supplements? Notice my hand is raised, too.  How many of you read the blogs about vitamin D?  Good!” IMG_2980

It sounds like vitamin D is in charge here. Let me get some more information about that for us. Bingo: DaVita at https://www.davita.com/kidney-disease/diet-and-nutrition/diet-basics/vitamin-d-and-chronic-kidney-disease/e/5326 was able to help us out here.

“Vitamin D is responsible for:

  • Building and maintaining strong bones
  • Keeping the right level of calcium and phosphorus in the blood
  • Preventing bones from becoming weak or malformed
  • Preventing rickets in children and osteomalacia in adults

vitamin d pillsToo much vitamin D can be toxic….”

Hmmm, the three work together with vitamin D as their captain.

I wondered what foods would be helpful for my friend in her healing process.

“Calcium

Milk, yogurt, cheese, sardines, spinach, collard greens, kale, soybeans, black-eyed peas, white beans and foods often fortified with calcium: breakfast cereals, orange juice, soy milk, rice milk

Vitamin D

Salmon, mackerel, sardines, tuna, flounder, sole, cod

Phosphorusfish

Ricotta cheese, barley, soybeans, sunflower seeds, cottage cheese, lentils”

Thank you to Weill Cornell Medical College’s Women’s Health Advisor at http://www.cornellwomenshealth.com/static_local/pdf/WHA0210_BoneHealth.pdf for the above information.

But, you know, it’s never just that easy. As CKD patients, we have limits of how much protein, potassium, sodium, and – wait for it – phosphorous we can eat each day. There is no socking in all the good stuff for kidney disease patients.

I can see why my friend’s surgeon told her the recovery might be slow. Something else that keeps the bones strong is weight bearing exercise, but how can she do that right now?

Until next week,

Keep living your life!

 

It’s Unfolding Now

Remember when I was lucky enough to catch the flu just after Christmas? (She wrote sarcastically.) When I went to the Immediate Care facility my doctor is associated with, the doctor there had my records and knew I’d had pleurisy at one time. But now, he ordered a chest x-ray to check for pneumonia. What he found instead was news to me… so, of course, I’m telling you about it.

IMG_2982To quote from the final result report of the X-ray: “There is unfolding of the thoracic aorta.” Huh? In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 there’s an explanation of thorax.

“What?  The what? Oh, the thorax. That’s ‘the part of the human body between the neck and the diaphragm, partially encased by the ribs and containing the heart and lungs; the chest’ according to The Free Dictionary at http://www.thefreedictionary.com/thorax.”

Thoracic is the adjective form of thorax; it describes the aorta in this case.

Do you remember what the aorta is? I sort of, kind of did, but figured I’d better make certain before I started writing about it. MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=2295 was helpful here.

“The aorta gives off branches that go to the head and neck, the arms, the major organs in the chest and abdomen, and the legs. It serves to supply them all with oxygenated blood. The aorta is the central conduit from the heart to the body.”

Now I get the connection between Chronic Kidney Disease and the aorta. Did you catch “oxygenated blood” in that definition? And what organs oxygenate the blood? IMG_2980Right. Your kidneys. This excerpt from SlowItDownCKD 2015 may help.

““The National Kidney and Urologic Diseases Information Clearinghouse …explains.

‘Healthy kidneys produce a hormone called erythropoietin, or EPO, which stimulates the bone marrow to produce the proper number of red blood cells needed to carry oxygen to vital organs.  Diseased kidneys, however, often don’t make enough EPO. As a result, the bone marrow makes fewer red blood cells.’”

With me so far? Now, what the heck is an unfolded aorta? I turned to the British site for radiologists, Radiopaedia.org, at https://radiopaedia.org/articles/unfolded-aorta for the definition. “The term unfolded aorta refers to the widened and ‘opened up’ appearance of the aortic arch on a frontal chest radiograph. It is one of the more common causes for apparent mediastinal widening and is seen with increasing age.

It occurs due to the discrepancy in the growth of the ascending aorta with age, where the length of the ascending aorta increases out of proportion with diameter, causing the plane of the arch to swivel.”

thoracic-aortaI purposely left the click through definitions in so you read them for yourself. You know the drill: click on the link while holding down your control key. For those of you who are reading the print version of the blog, just add the definition of aorta to the common terms we know: arch and ascending.

Mediastinal, according to the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/mediastinum is the adjective (describing) form of mediastinum or “the space in the chest between the pleural sacs of the lungs that contains all the tissues and organs of the chest except the lungs and pleurae; also:  this space with its contents.”

Hang on there, folks, just one more definition. I searched for a new site that wouldn’t offer a terribly technical definition of pleura (or pleurae) and found verywell at https://www.verywell.com/pleura-lungs-definition-conditions-2249162.

“The pleura refers to the 2 membranes that cover the lungs and line the chest cavity. The purpose of the pleura is to cushion the lungs during respiration.

The pleural cavity is the space between these 2 membranes and contains pleural fluid.”graduation

Side note: I definitely feel like I’m back teaching a college class again.

Okay, so now we have a bunch of definitions, we’ve put them together as best we can and where does it bring us? Are you ready for this? Nowhere. An unfolding of the thoracic aorta is nothing more than a function of age.

FullSizeRender (2)However, with CKD, it’s somewhere. As was explained in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, “Hemoglobin is the protein in red blood cells that carries oxygen from the lungs to the rest of the body.”  We’re already not getting enough oxygen due to our poor, declining in function kidneys.

Am I concerned about the unfolding thoracic aorta? No, not at all. It happens with age; I don’t think I can do anything about that. But, the CKD that also lowers our oxygen production? Oh yes, I can – do – and will do something about that by protecting my kidneys as best I can and keeping the remaining kidney function I have.

Kidneys.com, quoted in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, did a nice job of laying out a plan for me to do just that.

“Along with taking your prescribed blood pressure medications, lifestyle changes such as losing weight, exercising, meditating, eating less sodium,  drinking  less  IMG_2982alcohol  and  quitting  smoking  can  help  lower  blood pressure. Better blood pressure control helps preserve kidney function.”

I added using my sleep apnea machine and aiming for eight hours of sleep a night. I also stick to my renal diet – which limits protein, phosphorous, potassium, and sodium (as mentioned by kidney.com) – for the most part and keeping my kidneys hydrated by drinking at least 64 ounces of fluid a day.

Is it hard? I don’t know any more. It’s been nine years. They’re simply habits I’ve developed to live as long as I can and, sometimes, even raise the bottled waterfunction of my kidneys.

When my New York daughter was with us over the holidays, I realized how differently we eat than other people do. My husband has chosen to pretty much eat the way I do. So she actually had to go down to the market to pick up the foods that people ordinarily eat.  It would have been funny if I hadn’t been sick. I would have gone with her and laughed each time I answered, “No,” when she asked, “Do you eat this?”laughing

Until next week,

Keep living your life!

What Are You Doing for Others?

Today is Martin Luther King’s birthday. Today, more than ever, we need to heed his message. Whether you apply it to today’s bizarre political scene, your local community, your family, your co-workers doesn’t matter. What matters is the operant word: doing.

mlk-do-for-others

That picture and those words got me to thinking.  What AM I doing for others? And what still needs to be done?

My commitment is to spread awareness of Chronic Kidney Disease (CKD). As a patient myself, I know how important this is. As you know, CKD is a costly, lethal disease if not caught early and treated… and it’s not just older folks – like me – who are at risk. One out of ten people worldwide has CKD, yet an overwhelming number of them are unaware they have it.

stages of CKDWe also know the disease can be treated, just not the way you’d usually expect a disease to be treated. A diet with restrictions on protein, potassium, phosphorous and sodium is one aspect of that treatment. Exercise, adequate sleep, and avoiding stress are some of the other aspects. Some patients – like me – may have to take medication for their high blood pressure since that also affects kidney function. Imagine preventing a death with lifestyle changes. Now image saving the lives of all those who don’t know they have CKD by making them aware this disease exists. Powerful, isn’t it?

We’re all aware by now that the basic method of diagnosing CKD is via routine blood and urine tests. Yet, many people do not undergo these tests during doctor or clinic visits, so don’t know they have Chronic Kidney Disease, much less start treating it. That’s where I come in; I tell people what can be done. I tell people how they can be diagnosed and treated, if necessary.IMG_2979

I was a private person before this CKD diagnosis so many years ago. Now, in addition to a Facebook page, LinkedIn, and twitter accounts as SlowItDownCKD, I make use of an Instagram account where I post an eye catching picture daily with the hashtag #SlowItDownCKD. This brings people to my weekly blog about CKD (the one you’re reading now) and the four books I wrote about it: What Is It and How Did I Get It? Early Stage Chronic Kidney Disease (which explains CKD) and the others – The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1; The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2; and SlowItDownCKD 2015 – which are the blogs in print for those who don’t have a computer or are not computer savvy.

Healthline is a well-respected, informative site for medical information. This past year this blog, SlowItDownCKD, was a winner in their list of The Six Best Kidney Disease Blogs. That brought the hits on my page up by the hundreds. That means hundreds more people are now aware of Chronic Kidney Disease, how it is diagnosed, how it is treated, and how to live with it.badge_kidney-disease-1

But not everything is working as I’d hoped it would. Unfortunately, I am still not having success in having Public Service Announcements placed on television or radio. Nor have I been able to interest most general magazines or newspapers in bringing the disease to the public’s awareness.

It hasn’t totally been a wipeout there, though. Michael Garcia did interview me on The Edge Podcast and both Nutrition Action Healthletter, Center for Science in the Public Interest (the nation’s largest-circulation nutrition newsletter) and New York State United Teachers (membership 600,000) ‘It’s What We Do’ profiled my work spreading CKD Awareness. Profiling my work, interviewing me, mentioning the blog all bring awareness of Chronic Kidney Disease to the public. Awareness leads to testing. Testing leads to diagnosing. Diagnosing leads to treatment. Treatment leads to saving lives. This is why I do what I can to spread awareness of Chronic Kidney Disease.

friendsWhat about you? Can you speak about CKD with your family? Your friends? Your co-workers? Your brothers and sisters in whichever religion you follow? What about your neighbors? I was surprised and delighted at the number of non CKD friends and neighbors who follow the blog. When I asked why they did, they responded, “I have a friend….” We may all have a friend who may have CKD, whether that friend has told us yet or not.

There are more formal methods of spreading this awareness if that interests you. The National Kidney Foundation has an Advocacy Network.

“A NKF Advocate is someone who has been affected by kidney disease, donation or transplant and who wants to empower and educate others. These include people NKF-logo_Hori_OBwith kidney disease, dialysis patients, transplant recipients, living donors, donor family members, caregivers, friends and family members.

Advocacy plays an integral role in our mission. You can make a significant difference in the lives of kidney patients by representing the National Kidney Foundation. We give you the tools you need to make your voice heard.”

You can read more about this program at https://www.kidney.org/node/17759 or you can call 1.800.622.9010 for more information.

The American Kidney Fund also has an advocacy program, but it’s a bit different.

“There is strength in numbers. More than 5,100 passionate patients, friends, loved ones and kidney care professionals in our Advocacy Network are making a huge AKF logodifference on Capitol Hill and in their own communities. Together, we are fighting for policies that improve care for patients, protect patients’ access to health insurance and increase funding for kidney research. As advocates, we play a key role in educating elected officials and our communities about the impact of kidney disease.”

You can register for this network online at http://www.kidneyfund.org/advocacy/advocate-for-kidney-patients/advocacy-network/

Obviously, I’m serious about doing that which will spread awareness of CKD. You can take a gander at my website, www.gail-raegarwood.com, to see if that sparks any ideas for you as to how you can start doing something about spreading awareness of CKD, too. I urge you to do whatever you can, wherever you can, and whenever you can.

Until next week,

Keep living your life!

 

Starting the New Year with a Miracle

fireworksHappy New Year and welcome to 2017.  We did our usual stay in, watch movies, and toast with non-alcoholic champagne (I know that’s contradictory.) at midnight.  With our New York daughter here, it was even more meaningful.

A new year brings to mind new beginnings… and that leads me to Part 3 of the miracle series, as promised. I am so, so serious about this and hope you decide to take on for yourself causing a miracle in CKD by sharing information.

I was thinking about social media the other day. Where are the public service announcements about Chronic Kidney Disease?  I am still – nine years after my diagnose – knocking on seemingly closed doors to encourage Public Service Announcements everywhere. While the public doesn’t seem as involved with network television or radio as they were when I was younger, we now have Twitter, Facebook, Instagram, LinkedIn, and Tumblr to name just a few ways we can share.

I use a both a Facebook page and a Twitter account to post one fact about or information pertinent to those with CKD daily. Join me at newslowitdownckdfbcoverSlowItDownCKD on Facebook and @SlowItDownCKD on Twitter. I also monitored Libre’s Tweet Chat with Gail Rae 1/10/12. I knew nothing about Twitter at the time, but it was a way to share the information I had. You may not want to do this, but feel free to ‘steal’ the information posted and share it with others.

There are also Podcasts, Internet Radio Shows, YouTubes, etc. to share what the public needs to know about CKD. A YouTube can be viewed by one person who posts it on Facebook and go viral. Don’t bother looking at mine. They’re pretty painful. I’ll look into this again at a later date.

On the other hand, these are some of the social media venues that interviewed me: The Edge

Podcast 5/9/16, Online with Andrea 3/23/15 & 3/07/12, What Is It? How Did I Get It? 2/17/12, and Improve Your Kidney Health with Dr. Rich Snyder, DO 11/21/11. I never knew these venues existed before I started working towards the miracle I wanted to cause.

Lo and behold, my sharing brought others who wanted to know about CKD, so I was profiled by Nutrition Action Healthletter, Center for Science in the Public Interest 9/16, New York State United Teachers ‘It’s What We Do’  8/9/16, and Wall Street Journal ‘Health Matters’  1/13/14. Remember that Clairol commercial in last week’s blog?

Let’s say you agree that sharing can cause a miracle in Chronic Kidney Disease and want to join in living a life causing this miracle. The first thing you’d want to do is learn about CKD. The American Kidney Fund and the National Kidney Foundation both have a wealth of information written AKF logofor the lay person, not the medical community. By the way, the National Kidney Foundation also has information about NKF-logo_Hori_OBCKD globally. Maybe you’d rather join in World Kidney Day gatherings and distribute materials. Then keep an eye on World Kidney Day’s Twitter account for locations around the world.

As you can see, I’ve been creating this miracle is by writing for these organizations and more kidney specific ones, as well as guest blogging for various groups. You may not choose to do that… but you can speak at your religious group meetings, your sports league, your weekly card game, or whatever other group you’re comfortable with.

A miracle doesn’t have to be profound. You can help create this one. All you need is a little education about CKD and the willingness to introduce the subject where you haven’t before.friends

I live my life expecting miracles and I find they happen.  This miracle that I’m causing – and is happening – has been (and is) created by sharing, sharing, sharing. The more than 200 million people who have Chronic Kidney Disease need this information, to say nothing of those who have yet to be diagnosed.

kidneys5There aren’t that many organs to go around for those who didn’t know they had CKD and progressed to End Stage Renal Disease.  We know that transplantation is a treatment, not a cure, and one that doesn’t always last forever. We also know that kidneys from living donors usually last longer than those from cadaver donors. Share that, too.

We have our no cost, no pain, no tools needed miracle right on our lips… or at our fingertips. Start sharing, keep sharing, urge others to share, and help to prevent or slow down the progression in the decline of kidneys worldwide. Sharing is causing a miracle in CKD. Both deaths and hospitalizations for this disease have declined since 2008. If that isn’t a miracle, I don’t know what is. I keep saying I live my life expecting miracles; this is one of them.hearing

I was a private person before this disease. Now, in addition to the Facebook page and twitter accounts, I make use of an Instagram account (SlowItDownCKD) where I post an eye catching picture daily with the hash tag #SlowItDownCKD. This brings people to my weekly blog about CKD – as does my Instagram account as Gail Rae-Garwood – and the four books I wrote about it: one explaining it and the others the blogs in print – rather than electronic form for those who don’t have a computer or are not computer savvy. Time consuming? Oh yes, but if I expect to live a life of miracles, I need to contribute that time to share what I can about the disease and urge others to do the same.IMG_2979

I am urging you to realize you are the others I am asking to help cause a miracle in Chronic Kidney Disease. As the Rabbinic sage Hillel the Elder said, “If I am not for myself, who will be for me? If I am only for myself, what am I? If not now, when?” Now. You. Me. Others. CKD.

Until next week,

Keep living your life!

It’s a Miracle!

It’s that time of year again… the time to believe in miracles. There’s the miracle of Mary’s virgin birth at Christmas. And there’s the miracle of the Christmas TreeChanukah oil burning for eight nights instead of the one it was meant to. That got me to thinking about miracles and so, we have a different kind of several part blog beginning today. Consider it my gift to you this holiday season.

Miracles happen every day, too. We just need to take action to make them happen… and that’s what I’d like to see us do with Chronic Kidney Disease by sharing the available information.  This particular miracle is helping to alleviate the fear of needing dialysis and/or transplantation. This particular miracle is helping patients help themselves and each other. This particular miracle is helping doctors appreciate involved patients.

Yet, causing this miracle by sharing information is overlooked again and again. Chronic Kidney Disease, or CKD, is easily diagnosed by simple blood tests and urine tests (as we know), but who’s going to take them if they have no idea the disease exists, is widespread, and may be lethal? By Menorahsharing information, those at high risk will be tested. Those already in the throes of CKD can be monitored and treated when necessary. While CKD is not curable, we know it is possible to slow down the progression of the decline in your kidney function.

According to the National Institutes of Health at http://www.ncbi.nlm.gov/pmc/articles/PMC4112688,

“2014: Worldwide, an estimated 200 million people have chronic kidney disease (CKD).”

Before I was diagnosed, I had never heard of this disease… and apparently I’d had it for quite some time.  Why weren’t people sharing information about this?  Couldn’t that have prevented my developing it? At the time of my diagnose nine years ago, I meant doctors.  I don’t anymore. Nor do I leave causing a miracle by sharing to others.

This is my life. I have had Chronic Kidney Disease for nine years. As a college instructor who taught Research Writing at the time of my diagnose, I researched, researched, and researched again, but the only person I was sharing my research with was the nephrologist who treated me and FullSizeRender (2)monitored my condition. I may have expected a miracle there, but I didn’t get one. Why?

I got to thinking about that and realized he already knew what I told him. That’s when it struck me that if I expected a miracle with CKD, I would have to start sharing this information with the people who need it: the ones who didn’t know, the ones who had just been diagnosed and were terrified, and the families of those with CKD who didn’t know they also might be at risk. I went so far as to bring CKD education to the Native American Communities in Arizona since Native Americans are at high risk. I had the information and had experts willing to come to the communities to share that information.

We all know this is a costly, lethal disease if not caught early and treated… and that it’s not just the elderly who are at risk. One out of ten people worldwide has CKD, yet an overwhelming number of them are unaware they have it. We know CKD can be treated, just not the way those who don’t have it might expect. A diet with restrictions on protein, potassium, phosphorous and sodium may be one aspect of that treatment. Exercise, adequate sleep, and avoiding stress are some of the other aspects. Some patients – like me – may have to take medication for their high blood pressure since that also affects kidney function. Imagine preventing a death with lifestyle changes. Now imagine EXPECTING the miracle of preventing that death by sharing this information. Powerful, isn’t it?

We know the basic method of diagnosing CKD is via routine blood and urine tests. Yet, many people do not undergo these tests during doctor or clinic visits, so don’t know they have Chronic Kidney Disease, much less start treating it.urine container

This is where the miracle I expected in my life began for me. I started speaking with every doctor of any kind that I knew or that my doctors knew and asked them to share the information. They were already experiencing time constraints, but suggested I write a fact sheet and leave it in their waiting rooms since they agreed there’s no reason to wait until a person is in kidney failure and needs dialysis or a transplant to continue living before diagnosing and dealing with the illness.

My passion about producing this miracle multiplied threefold from that point on. So much so that I went one better and wrote a book with the facts. I was convinced we would be able to cause a miracle by sharing information about this disease. My goal was clear: have everyone routinely tested.

Dr. Robert  Provenzano, a leading nephrologist in the United States,  succinctly summed up the problem worldwide.

“Chronic Kidney Disease is an epidemic in the world…. As other countries become Westernized, we find the incidence of Chronic Kidney Disease and end-stage renal failure increases. We see this in India, and in China. We see this everywhere. …”

We repeatedly see diabetes and hypertension cited as the two major causes of CKD. Does your neighbor know this? How about the fellow at the gas bp cuffstation? Ask them what Chronic Kidney Disease is. More often than not, you’ll receive a blank look – one we can’t afford if you keep the statistic at the beginning of this paper in mind. We can cause a miracle to change this.

Sharing can be the cause of that miracle… but that’s not something we can leave to the other guy. We each ARE the other guy. More on this next week.

For now, Merry Christmas, Happy Chanukah, Happy Kwanzaa (somehow implicit in this holiday is the miracle of bringing people together), and every other holiday I’ve inadvertently missed or don’t know about.

portal_in_time_cover_for_kindleI just got word that Portal in Time – my first novel – is available on Amazon.com. Consider that as a holiday gift for those friends not interested in CKD. Of course, I just happen to have four CKD books on Amazon.com for those who might be interested in CKD. Be part of a miracle.IMG_2979

Until next week,

Keep living your life!

Clean…or Dirty?

My daughter brought a friend to a party we were both attending a few weeks ago. We all enjoyed each other so we talked about the possibility of going out to dinner together at some future date. Being well aware of my renal restrictions and how that sometimes limits our choice of restaurants, IMG_2980I asked my daughter’s friend how he likes to eat. He said, “Clean.”

I’ve heard this before, as you probably have, too. Yet, I wasn’t sure exactly what it meant. And that’s why I’m researching it today and seeing just how it does – or doesn’t – fit into our usual renal diet. Will someone get the dictionary, please?  Thanks.

According to my personal favorite, The Merriam-Webster at http://www.merriam-webster.com/dictionary/clean, clean means

: free from dirt, marks, etc.

: not dirty

: tending to keep clean

: free from pollution or other dangerous substancesdictionary

Maybe it’s that last definition that applies to eating?  Hmmm, I need to take a closer look at this.

In her nutrition blog on another of my favorites – The MayoClinic – this past summer,  Katherine Zeratsky, R.D., L.D., suggested these as the main tenets of clean eating:

  • Eat more real foods. Sound familiar? One of the tenets of the Mayo Clinic Diet is eating more real foods and fewer processed or refined foods. Convenience food is OK, sometimes even necessary, just make sure that what’s in that can or package is the real thing with few other ingredients.
  • Eat for nourishment. Eat regular, balanced meals and healthy snacks that are nourishing and not too rushed. Eat at home more often and prepare food in healthy ways. Pack food to eat away from home when on the road, at work or activities. When you do eat out, choose wisely.
  • Eat safe food. This is my addition to the idea of clean eating. Based on the name itself, clean food should be safe. Practice food safety by IMG_2982washing produce before consumption (you may consider buying organic as well), keeping raw meats separate from produce from the grocery store to home, cooking food to proper temperatures and chilling food quickly after service.

You can read more of her thoughts about clean eating at http://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/expert-blog/clean-eating/bgp-20200665. By the way, R.D. means Registered Dietician and L.D. is Licensed Dietitian. Most states require at least one of these in order for the person to provide nutrition or diet advice.

This sounds too simple. Let’s look a bit more. I found loads of articles on sites I didn’t recognize by people I hadn’t heard of, so I decided to take a look at a site specifically for clean eaters. This is from Clean Eating Magazine at http://www.cleaneatingmag.com/food-health/food-and-health-news/what-is-clean-eating/.

water melon“The soul of eating clean is consuming food the way nature delivered it, or as close to it as possible. It is not a diet; it’s a lifestyle approach to food and its preparation, leading to an improved life – one meal at a time.

Eat five to six times a day – Three meals and two to three small snacks. Include a lean protein, plenty of fresh fruit and vegetables, and a complex carbohydrate with each meal. The steady intake of clean food keeps your body energized and burning calories efficiently all day long.

Choose organic clean foods whenever possible.

Drink at least two liters of water a day.

veggiesLimit your alcohol intake to one glass of antioxidant-rich red wine a day

Get label savvy – Clean foods contain just one or two ingredients. Any product with a long ingredient list is human-made and not considered part of a clean diet.

Avoid processed and refined foods – This includes white flour, sugar, bread and pasta. Enjoy complex carbs such as whole grains instead.

Steer clear of anything high in trans fats, anything fried or anything high in sugar. Avoid preservatives, color additives and toxic binders, stabilizers, emulsifiers and fat replacers.

Consume healthy fats.

FullSizeRender (3)Aim to have essential fatty acids, or EFAs, incorporated into your clean diet every day.

Learn about portion sizes – Work towards eating within them. When eating clean, diet is as much about quantity as it is quality.”

Wow! And there’s much more on their site.

There are just a few things that concern me here, specifically about the contents of those three meals and two to three small snacks. How can I stretch my five ounces of protein over all these meals and snacks? And my three servings each of only certain fruits and vegetables?   I suppose I could skip the protein on one of them and have only one ounce at each of the others.

Do you know what one ounce of protein looks like? One egg, ¼ tablespoon of peanut butter, or 2 bites of meat (although I don’t eat red meat), poultry or seafood. That last one is subjective; I used my food scale to test it out. I imagine it could be different if your mouth is smaller or larger than mine. I also didn’t take into account the foods not on the renal diet, such as beans and nuts.

Thanksgiving

I’m attempting to avoid carbohydrates as much as I can in order to lose some weight, but my renal diet allows for 7 or 8 choices of these a day and 3 of fruits – which I do eat in moderation.  There may be a problem with the whole grains recommended for clean eating since whole grains are high in phosphorous, something Chronic Kidney Disease patients need to watch.  Chapter 8 of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease explains the renal diet I follow in detail.FullSizeRender (2)

Other than those objections, I like the sound of clean eating. However, I do remember going to a clean eating restaurant when they first started opening and finding I was severely limited as to what I could order. Yep, whole grains, fruits and vegetables not on my diet, and too much protein. I checked out the vegetarian dishes, but found them huge.  Funny to think of that as a negative, isn’t it?

As usual, it looks like this is something you have to decide for yourself according to your renal diet since each of us is different.  Would I try a clean eating restaurant again, sure. Would I try clean eating at home?  Maybe, although the whole grains thing bothers me.

Until next week,

Keep living your life!  

Updates, Anyone?

FullSizeRender (2)Several months ago, an Arizona reader asked me to meet her for lunch to talk over her Chronic Kidney Disease journey and mine. I was open to the idea and glad to be able to share ideas with each other. Uh-oh, during the conversation, while trying to share my iPhone apps with her, I discovered that one of those I use to help me is no longer available to new installers. That got me to thinking about what else may have changed in the CKD electronic world.

Time to back track just a bit. I have an iPhone and look for apps for those. Many of the apps I looked at are also available for Androids, iPads, and iPod Touch. According to GCFLearnFree.org – a program of Goodwill Community Foundation® and Goodwill Industries of Eastern NC Inc.® (GIENC®)  – at http://www.gcflearnfree.org/computerbasics/understanding-applications/1/,

“Simply put, an app is a type of software that allows you to perform specific tasks. Applications for desktop or laptop computers are sometimes called desktop applications, while those for mobile devices are called mobile apps.”

During an internet search, I found that NephCure which provides “detailed information about the diseases that cause Nephrotic Syndrome (NS) and Focal Segmental Glomerulosclerosis (FSGS)” (and was one of the first organizations to interview me about CKD, by the way) – at http://nephcure.org/livingwithkidneydisease/managing-your-care/kidney-health-tracking-tools/helpful-mobile-apps/ was way ahead of me in discussing apps. This is what’s on their website:

Diet and Nutrition Apps

  • 02-77-6660_ebe_myfoodcoachappKidneyAPPetite– Gives daily summaries of key nutrients for kidney health, check the nutritional value of foods before you eat it, and provides printable summaries to refer to. Great for patients on a renal diet! Cost: Free,  Device: iOS
  • Pocket Dietitian– Created by a Nephrologist, allows you to choose your health conditions and dietary restrictions to see recommended foods as well as keep track of what you have eaten. You can even see your past nutrition in graph form. Cost: Free,  Device: iOS and Android
  • My Food Coach– is designed to help you understand and manage all of your nutritional requirements. This app offers personalized nutrition information, recipes and meal plans. Cost: Free,  Device: iOS and Android
  • HealthyOut– Enables you to search and order nearby healthy food and browse for healthy options while out to eat. You can even choose a specific diet such as gluten free! Cost: Free, Device: iOS and Android

kidneyapp

  • Restaurant Nutrition– Allows you to search restaurants and look at nutritional values, locate nearby restaurants, and keep a food journal. The Restaurant Nutrition application shows nutritional information of restaurant foods. Cost: Free, Device: iOS and Android

While I could easily go to most of the apps’ websites by clicking on the name while I held down the control button, this was not the case with Pocket IMG_2982Dietician. I was able to find it and lots of descriptive information about it in the Google Play store, but kept getting the message that I had no devices. The help function on the site was not helpful.

I have KidneyAPPetite on my phone, but keep using KidneyDiet instead. It keeps track of the 3 Ps (protein, potassium, and the one missing from food labels: phosphorous), sodium, calories, carbohydrates, cholesterol, and fat, and fluid intake. The very nice part of the app? You can add the foods you eat that are not on the food list provided. Unfortunately, this is the one I mentioned in the first paragraph. This is what’s presently on their website:

The KidneyDiet® app is no longer being sold or supported. It, and all your data, will continue to reside on your device unless you delete it.

Thank you for your patronage. We hope KidneyDiet® has helped you.

Sincerely,
The KidneyDiet® Team

FullSizeRender (3)I consider this a great loss for those looking for a simple nutritional app for their CKD.

What about My Food Coach? It has an extra feature that my favorite lacked: a warning when a recipe would bring you over your renal diet limits. It’s recipe oriented, which doesn’t endear it to me since I like to experiment cooking my big five ounces of protein daily with my three different size servings of different fruits that are on my renal diet. I also avoid red meat.

HealthyOut, while not specifically for CKD, does have a function for the Mediterranean diet which is more often than not recommended for us. I thought this was a hoot since it never occurred to me that you can check restaurant foods by the restaurant name. I am adding this app to my iPhone.

Restaurant Nutrition is another app offered by Google Play, which means I can’t even get into it. I did get through to the reviews and couldn’t find any positive ones. I didn’t see the point in pursuing this any further.IMG_2980

There are even kidney disease games, such as KidneyWarrior, to teach yourself and your loved ones about your disease. This is the author’s description of the game:

“A new hero emerges to fight a dreadful illness. A quest to save his father. A brand NEW approach to mobile gaming •Play as Glo, a young hero on his exciting adventure to save his father •SHOOT, SMACK, and SPIN your way through 3 different and exciting stages, packed with hours of gaming •LEARN about what kidneys do and how kidney disease affects people worldwide Created on behalf of Project ARK, an organization focused to support research efforts on combating kidney disease. As a high school organization, Project ARK seeks to raise awareness on campus and within the community.”

To borrow a term from a now defunct cigarette brand: We’ve come a long way, baby!

Until next week,

Keep living your life!

The Nutrition Action Health Letter Article

I am now officially excited.  I’d been getting some comments about this article which I thought wasn’t being published until September. I wondered why. It was my mistake. The article was to appear in the September issue, which I didn’t realize is published before the month begins.

The Center for Science in the Public Interest’s September Nutrition Action Health Letter is out… and younutrition can read it online, too. The URL is http://www.nutritionaction.com/wp-content/uploads/cover-Kidney-Check-How-to-Keep-Yours-Going-Strong.pdf. Many thanks to Bonnie Liebman for such a fine job of reporting and aiding in spreading Chronic Kidney Disease Awareness. It’s long, six pages, so what we have here are excerpts.

 

David White“I didn’t know that I had end-stage renal disease until I was admitted to the hospital in 2009,” says David White, who was then in his mid-40s. “A few days later, I stopped producing urine.”

Doctors told White that he had crashed. “It was scary,” he says. “I went from ‘Something may be wrong’ to ‘Oh my god am I going to die?’ to ‘I have to spend the rest of my life on dialysis.’”

And with four hours of dialysis three times a week, he never felt great.

“People call it the dialysis hangover,” says White, from Temple Hills, Maryland. “You’re so tired that you want to sleep all day after dialysis and most of the following day. And then you gear up for the next treatment.”

And White struggled with his one-quart-a-day limit on fluids. “When you drink too much, moving isn’t comfortable, laying down isn’t comfortable,” he says. “It’s hard to breathe.”

For Gail Rae-Garwood, the news about her kidneys came when she switched to a new doctor closer to herNutrition home in Glendale, Arizona.

“She decided that as a new patient, I should have all new tests,” says Rae-Garwood, now 69. “When the results came in, she got me an appointment with a nephrologist the next day. When you get an appointment with a specialist the next day, you know something is not right.”

Rae-Garwood had chronic kidney disease. “My GFR was down to 39, and apparently had been low for quite a while,” she says. (Your GFR, or glomerular filtration rate, is the rate at which your kidneys filter your blood.) “‘What is chronic kidney disease and how did I get it?’ I demanded,” recalls Rae-Garwood.

Every 30 minutes, your kidneys filter all the blood in your body. Without at least one, you need dialysis or a transplant. Yet most people have no idea how well their kidneys are working. “It’s very common for people to have no idea that they have early chronic kidney disease,” says Alex Chang, a nephrologist at Geisinger Health System in Danville, Pennsylvania.

A routine blood test sent to a major lab—like Quest or LabCorp—typically includes your GFR. If it doesn’t, your doctor can calculate it.

kidney function“A GFR is pretty routine for anyone who has blood work done,” says Chang. “But if you have very mild kidney disease, and especially if you’re older, a doctor might not mention it since kidney function tends to decline as you age.”

Doctors also look for kidney disease by testing your urine for a protein called albumin …. “That’s usually only done if you have high blood pressure or diabetes or some risk factor for kidney disease other than age,” says Chang.

Rae-Garwood’s previous doctor missed that memo. “I had been on medication for high blood pressure for decades,” she explains. “I wonder how much more of my kidney function I could have preserved if I’d known about it earlier.”

***

David White had kidney transplant in 2015. “It’s given me my life back,” he says. “No more dialysis.”

He takes anti-rejection drugs and steroids, and, like Rae-Garwood, he gets exercise and has to watch what he eats.

“I’ve changed my diet radically,” says Rae-Garwood. “I have to limit the three P’s—protein, potassium, What is itand phosphorus. I’m restricted to 5 ounces of protein a day. We have no red meat in the house. Any product above 7 or 8 percent of a day’s worth of sodium I don’t buy.

“And you know what? It’s fine. It’s been nine years now, and I’ve been able to keep my GFR around 50.”

Both patients are now advocates for preventing kidney disease. “I’ve written four books and almost 400 weekly blogs, and I post a daily fact about chronic kidney disease on Facebook,” says Rae-Garwood. White chairs the the MidAtlantic Renal Coalition’s patient advisory committee, among other things among other things.

“Get tested,” urges Rae-Garwood. “Millions of people have chronic kidney disease and don’t even know it. All it takes is a blood and urine test.”

My hope is that as a result of this article, more libraries, medical schools, and nephrology practices will IMG_2982order copies of What Is It and How Did I Get It? Early Stage Chronic Kidney FullSizeRender (3)Disease, The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, and SlowItDownCKD 2015. If you have a Kindle, Amazon has two wonderful low cost or free programs that may make it easier for you, your loved ones, and anyone you think could benefit from these books to read them.

This is how Amazon explains these programs:

“Kindle Unlimited is a subscription program for readers that allows them to read as many books as they want. The Kindle Owners’ Lending Library is a collection of books that Amazon Prime members who own a Kindle can choose one book from each month with no due dates.”

Barnes and Noble doesn’t have any such programs, but they do offer discount deals daily, which you can use to purchase any book.IMG_2980

I urge you to help spread awareness of Chronic Kidney Disease in any way you can. Here’s another quote from the article that may help you understand why:

“One out of ten adults have chronic kidney disease. Most don’t know it because early on, kidney disease has no symptoms. And because the risk rises as you age, roughly one out of two people aged 30 to 64 are likely to get the disease during their lives….”

Until next week,

Keep living your life!

CKD Treatment Interruptus

Recently, someone close to me experienced a major burglary.  After calling the police, he called me. That’s what my friends do and I’m thankful they do. I kept him on the phone while I threw on some clothes and sped over to his house. This is a strong, independent man who was shocked at the intimacy of the invasion of his home. When I got there, we walked from room to room, astonished at how much had been stolen.

That night, I couldn’t leave – not even to go home for my evening medications and supplements. That night, I couldn’t sleep while my buddy was in such turmoil. So we sat up staring at the empty space where the TV had been.  He’s not on the renal diet and all he had that I could eat was some chicken, no fruit, no vegetables. And I was too busy being with him to exercise. This was my good buddy of over 30 years standing.

The next morning, another friend came over to help with security devices and spend time with our mutual friend.  I got to go home, take my morning medications, and crawl into bed for ½ an hour. But then our mutual friend had to go to work, so I went back to my buddy’s house and spent the day helping him try to list what was missing, what to do about the insurance, how to handle going to work, etc. The word spread, and, suddenly, a third friend was coming to spend the night with him and another couple joined them to make dinner.  I could go home again.    friends

But I was exhausted. I ate stupidly: Chinese restaurant food with all that sodium. I even ate rice, and here I am on a low carbohydrate diet. I sat in the living room like a zombie while Bear waited on me hand and foot.

Even with all this help, my buddy needed to see me daily. I was his strength. So we ran around rummaging up some receipts he’d need for the insurance. But I could see he was feeling better. Our mutual friends were amazing, including those who couldn’t leave work to come so kept phoning and texting instead. A different someone else stayed with him overnight again.  Then he only needed to see me for a quick hug… and yet another someone else stayed with him overnight again. He didn’t really need me anymore, which is great because I started breaking down.

sad faceI have Chronic Kidney Disease. I need to sleep adequately – and with my BiPap. I need to follow the renal diet. I need to exercise. I need to rest.  I did very little of any of this during the trauma itself, and that’s alright. This is my long term buddy – as grown up and mature as he is – and he needed me. But what did I do to myself?

You guessed it. Right away, my blood pressure shot up and that’s a bad thing. Why? Let me tell you… or you can go to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, page 9.  FullSizeRender (2)

“Through my research, I began to understand what high blood pressure [HPB] has to do with renal disease.  HPB can damage small blood vessels in the kidneys to the point that they cannot filter the waste from the blood as effectively as they should. Nephrologists may prescribe HBP medication to prevent your CKD from getting worse since these medications reduce the amount of protein in your urine.  Not too surprisingly, most CKD related deaths are caused by cardiovascular problems.”

FullSizeRender (3)What about the stress?  What was that doing to my poor overworked kidneys?  I went to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 for the answer to that one:

“First you feel the fight or flight syndrome which means you are releasing hormones.  The adrenal glands which secrete these hormones lay right on top of your kidneys. Your blood sugar raises, too, and there’s an increase in both heart rate and blood pressure.  Diabetes {Blood sugar} and hypertension {Blood pressure} both play a part in Chronic Kidney Disease.”

That’s two strikes against me. I almost hesitate to think about exercise… or the lack of it for several consecutive days.  This is one of the points about treating prediabetes (which I have and so do so many of you) from the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/prediabetes/basics/treatment/con-20024420 which was included in SlowItDownCKD 2015:IMG_2980

“Losing excess pounds. If you’re overweight, losing just 5 to 10 percent of your body weight — only 10 to 20 pounds (4.5 to 9 kilograms) if you weigh 200 pounds (91 kilograms) — can reduce the risk of developing type 2 diabetes. To keep your weight in a healthy range, focus on permanent changes to your eating and exercise habits. Motivate yourself by remembering the benefits of losing weight, such as a healthier heart, more energy and improved self-esteem.”

And the renal diet? We mustn’t forget about the renal diet. In The Book of Blogs: Moderate Kidney Disease, Part 1 I quoted from 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:

“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 IMG_2982CKD 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.”

Have I done more permanent damage to my kidneys? I’m hoping not since it was just a few days and I made the conscious decision to be with my buddy instead of tending to myself. Let’s consider this a cautionary tale instead.

Until next week,

Keep living your life!

Maybe for You, But Not for Me

hairLast week, when I wrote about thinning hair, I received loads of suggestions. While I was pleased with all the interaction, it was clear to me that we had people answering from three different positions: pre-dialysis (like me at Stage 3 Chronic Kidney Disease), dialysis, and post-transplant. What also became clear is that the ‘rules’ for each position are different. That got me to wondering.

But first, I think a definition of each of these is necessary. My years teaching English ingrained in me that ‘pre’ is a prefix meaning before; so pre-dialysis means before dialysis. In other words, this is CKD stages 1-4 or 5 depending upon your nephrologist. It’s when there is a slow progression in the decline of your kidney function.

I remembered a definition of dialysis that I liked in SlowItDownCKD 2015, and so, decided to repeat it here.IMG_2980

“According to the National Kidney Foundation at https://www.kidney.org/atoz/content/dialysisinfo,

‘Dialysis is a treatment that does some of the things done by healthy kidneys. It is needed when your own kidneys can no longer take care of your body’s needs. There are several different kinds of dialysis. Basically, they each eliminate the wastes and extra fluid in your blood via different methods.’”

And post -transplant?  Simply put, it means after having had an kidney (or other organ) placed in your body to replace one that doesn’t work anymore.

I know as a pre-dialysis that I have certain dietary restrictions.  Readers have told me some of theirs and they’re very different. It’s not the usual difference based on lab results that will tell you whether you need to cut back more on one of the electrolytes this quarter. It seemed like an entirely different system.

FullSizeRender (2)Let’s go back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease to see what my basic dietary restrictions as a pre-dialysis CKD patient are.

 “The (e.g. renal) diets seem to agree that protein, sodium, phosphorus and potassium need to be limited. … Apparently, your limits may be different from mine or any other patient’s.  In other words, it’s personalized.”

Well, what about those on dialysis? What do their dietary guidelines look like? I found this in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

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

“Potassium is a mineral found in many foods, especially milk, fruits, and vegetables. It affects how steadily your heart beats. Healthy kidneys keep FullSizeRender (3)the right amount of potassium in the blood to keep the heart beating at a steady pace. Potassium levels can rise between dialysis sessions and affect your heartbeat. Eating too much potassium can be very dangerous to your heart. It may even cause death.”

I suspected that potassium is not the only dietary problem for dialysis and dug a bit more.  I discovered this information on MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=78054, along with the caveat that these also need to be individualized as per lab results.

  1. Fluids: Allowance is based primarily on the type of dialysis and urine output. If you have any edema, are taking a diuretic, and/or have congestive heart failure, your allowance will be adjusted.
  2. Sodium: This will be modified to maintain blood pressure and fluid control and to help prevent congestive heart failureand pulmonary edema.
  3. Potassium: Your intake of this will be adjusted to prevent your blood levels from going too high or too low.
  4. bananaPhosphorus: The majority of dialysis patients require phosphate binders and dietary restrictions in order to control their blood phosphorus levels.
  5. Protein: Adequate protein is necessary to maintain and replenish your stores. You may be instructed on increasing your intake now that you are on dialysis.
  6. Fiber: There is a chance that constipation may be a problem due to fluid restrictions and phosphate binders, so it’s important to keep fiber intake up. You will need guidance on this because many foods that are high in fiber are also high in potassium.
  7. Fat: Depending on your blood cholesterol levels, you may need to decrease your intake of trans fat, saturated fat, and cholesterol.
  8. Calories: If you are over or underweight, you will be instructed on adjusting the amount of calories that you take in each day.
  9. Calcium: Most foods that contain calcium also contain phosphorus. Due to your phosphorus restrictions, you will need guidance on how to get enough calcium while limiting your intake of phosphorus.

Big difference here!  More protein, less calcium, phosphate binders, fat and calcium. No wonder the responses I got to last week’s blog were so varied.

And post-transplant? What about those dietary restrictions? The Mayo Clinic at http://www.mayoclinic.org/tests-procedures/kidney-transplant/manage/diet-nutrition/nuc-20209734 has that one covered, with the same warning as the other two groups’ diets: your labs dictate your amounts.

  • Eating at least five servings of fruits and vegetables each dayfruits and veggies
  • Avoiding grapefruit and grapefruit juice due to its effect on a group of immunosuppression medications (calcineurin inhibitors)
  • Having enough fiber in your daily diet
  • Drinking low-fat milk or eating other low-fat dairy products, which is important to maintain optimal calcium and phosphorus levels
  • Eating lean meats, poultry and fish
  • Maintaining a low-salt and low-fat diet
  • Following food safety guidelines
  • Staying hydrated by drinking adequate water and other fluids each day

So it looks like you get to eat more servings of fruits and vegetables a day, must avoid grapefruit and its juice, and be super vigilant about calcium and phosphorus levels. Notice the same suggestion to have enough fiber in your diet as when on dialysis.

Whoa! We have three different sets of diet guidelines for three different stages of CKD, along with the strict understanding that everything depends upon your lab results. That means that the post-transplant patients were right – for them – that I needed more protein.  And the dialysis patients were right – for them – too. But for the pre-dialysis patients? Nope, got to stay below five ounces daily. IMG_2982

Until next week,

Keep living your life!

The American Kidney Fund Blog

AKF logoI was honored that The American Kidney Fund (www.kidneyfund.org) asked me to write a blog for them. This is that blog. Once it was published last Thursday, I started thinking. If you share the blog and ask those you shared with to share it, too, and they asked their friends to share it, too… image how many people would become aware of Chronic Kidney Disease. Will you do that?

Slowing Down CKD—It Can Be Done

When a new family doctor told me nine years ago that I had a problem with my kidneys—maybe chronic kidney disease (CKD)–my first reaction was to demand, “What is it and how did I get it?”

No doctor had ever mentioned CKD before.

I was diagnosed at stage 3; there are only 5 stages. I had to start working to slow it down immediately. I wanted to know how medication, diet,stages of CKD exercise and other lifestyle changes could help. I didn’t want to be told what to do without an explanation as to why… and when I couldn’t get an explanation that was acceptable to me, I started researching.

I read just about every book I could find concerning this problem. Surprisingly, very few books dealt with the early or moderate stages of the disease.  Yet these are the stages when we are most shocked, confused, and maybe even depressed—and the stages at which we have a workable chance of doing something to slow down the progression in the decline of our kidney function.

I’ve learned that 31 million people—14 percent of the population—have CKD, but most don’t know they have it. Many, like me, never experienced any noticeable symptoms. Many, like me, may have had high blood pressure (hypertension) for years before it was diagnosed. Yet, high blood pressure and diabetes are the two leading causes of CKD.

I saw a renal dietician who explained to me how hard protein is on the kidneys… as is phosphorous… and potassium… and, of course, sodium. Out bananawent my daily banana—too high in potassium. Out went restaurant burgers—larger than my daily allowance of protein. Chinese food? Pizza? Too high in sodium. I embraced an entirely new way of eating because it was one of the keys to keeping my kidneys functioning in stage 3.

Another critical piece of slowing down CKD is medication. I was already taking meds to lower my blood pressure when I was first diagnosed with CKD. Two more prescriptions have been added to this in the last nine years: a diuretic that lowers my body’s absorption of salt to help prevent fluid from building up in my body (edema), and a drug that widens the blood vessels by relaxing them.

For a very short time, I was also taking a drug to control my pre-diabetes, but my doctor and I achieved the same effects by changing my diet even more. (Bye-bye, sugars and most carbs.) The funny thing is now my favorite food is salad with extra virgin olive oil and balsamic vinegar. I never thought that would happen: I was a chocoholic!

Exercise, something I loved until my arthritis got in the way, was also important. I used to dance vigorously several nights a week; now it’s once a week with weights, walking, and a stationary bike on the other days. I think I took sleep for granted before CKD, too, and I now make it a point to blues dancersget a good night’s sleep each day. A sleep apnea device improved my sleep—and my kidney function rose another two points.

I realized I needed to rest, too. Instead of giving a lecture, running to an audition, and coming home to meet a deadline, I slowly started easing off until I didn’t feel like I was running on empty all the time. I ended up happily retiring from both acting and teaching at a local college, giving me more time to work on my CKD awareness advocacy.

I was sure others could benefit from all the research I had done and all I had learned, so I wrote my first book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, in 2011. I began a blog after a nephrologist in India told me he wanted his newly diagnosed patients to read my book, but most of them couldn’t afford the bus fare to the clinic, much less a book. I published each chapter as a blog post. The nephrologist translated my posts, printed them and distributed them to his patients—who took the printed copies back to their villages. I now have readers in 106 different countries who ask me questions I hadn’t even thought of. I research for them and respond with a blog post, reminding them to speak with their nephrologists and/or renal nutritionists before taking any action… and that I’m not a doctor.

What is itEach time I research, I’m newly amazed at how much there is to learn about CKD…and how many tools can help slow it down. Diet is the obvious one. But if you smoke or drink, stop, or at least cut down. If you don’t exercise, start. Adequate, good quality sleep is another tool. Don’t underestimate rest either; you’re not being lazy when you rest, you’re preserving whatever kidney function you have left. I am not particularly a pill person, but if there’s a medication prescribed that will slow down the gradual decline of my kidney function, I’m all for it.

My experience proves that you can slow down CKD. I was diagnosed at stage 3 and I am still there, nine years later. It takes knowledge, commitment and discipline—but it can be done, and it’s worth the effort. I’m sneaking up on 70 now and know this is where I want to spend my energy for the rest of my life: chronic kidney disease awareness advocacy. I think it’s just that important.

IMG_1398SlowItDownCKD 2015 Book Cover (76x113)

 

SlowItDownCKD is the umbrella under which Gail Rae-Garwood writes her CKD books and blog, offers talks, participates in book signings, is interviewed on podcasts and radio shows, and writes guest blogs. Her website is www.gail-raegarwood.com.

Until next week,

Keep living your life!

Bridging the Gap…

Which gap? The anion. What’s that, you say.

“The anion gap deals with the body’s acidity. A high reading for the anion gap could indicate renal failure.”

Book CoverThat’s what I wrote in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. But you know what? It’s just not enough information any more. Why? I’m glad you asked.  Oh, by the way, if you want to check your own reading look in the Comprehensive Metabolic Panel part of your blood tests, but only if your doctor requested it be tested.

I mentioned a few blogs back that I returned to a rheumatologist I hadn’t seen in years and she chose to treat me as a new patient. Considering how much had happened medically since I’d last seen her, that made sense to me and I agreed to blood tests, an MRI, and a bone density test.

The only reading that surprised me was an abnormally high one for anion gap. The acceptable range is 4 – 18. My reading was 19.  While I have Chronic Kidney Disease, my kidneys have not failed (Thank goodness and my hard work.) In addition, I’ve become quite aware of just how important acidity and alkaline states are and have been dealing with this, although apparently not effectively.

MedFriendly at http://www.medfriendly.com/anion-gap.html – a new site for me written by Dr. Dominic Carone for the express purpose of simplifying complex medical terms for the lay person – explains it this way:diabetes equipment

“…. Too high of an anion gap level can mean that there is acidosis (too much acid in the blood) due to diabetes mellitus. The high anion gap level can also be due to lactic acidosis, in which the high level of acid is due a buildup of a substance called lactic acid. … A high anion gap can also be due to drug poisoning or kidney failure. …When the anion gap is high, further tests are usually needed to diagnose the cause of the problem.”

Ah, I remember writing a bit about acidosis in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1. It had to do with DIGITAL_BOOK_THUMBNAILfruits and vegetables.

“’After three years, consuming fruits and vegetables or taking the oral medication reduced a marker of metabolic acidosis and preserved kidney function to similar extents. Our findings suggest that an apple a day keeps the nephrologist away,’ study author Dr. Nimrit Goraya, of Texas A&M College of Medicine, said in a university news release.

Apparently, some CKD suffers have metabolic systems that are severely acidic. Fruits and vegetables are highly alkaline.  This may counteract the acidity in the patients mentioned above AND those that have less metabolic acidosis (acid in the body).

You can find the complete article at http://kidneygroup.blogspot.com/2012/11/eating-fruits-and-vegetables-may-help.html

Okay, I like fruit and I like vegetables. Ummm, will my limitation of three servings of each within the kidney friendly fruit and vegetable lists do the trick, I wonder. Looks like I’ll be questioning both the rheumatologist and the renal dietician about that.

Recently I’ve written about alkaline being the preferred state of a CKD patient’s body. That is the antithesis of an acid body state. Years ago, Dr. Richard Synder was a guest blogger here and also interviewed me on his radio show. He is the author of What You Must Know about Kidney Disease and a huge proponent of alkaline water.  Here’s what he had to say about that (also from Part 1):

“I have taken alkaline water myself and I notice a difference in how I feel. Our bodies are sixty percent water. Why would I not want to put the best517GaXFXNPL._SL160_PIsitb-sticker-arrow-dp,TopRight,12,-18_SH30_OU01_AA160_ type of water into it? Mineralized water helps with bone health.  In alkalinized water, the hydroxyl ions produced from the reaction of the bicarbonate and the gastric acid with a low pH produce more hydroxyl ions which help buffer the acidity we produce on a daily basis. (Me interrupting here: During our visit last Monday, I noticed that my extremely health conscious, non-CKD, Florida friend drinks this.)

Where are these buffers? In the bones and in the cells, as well as some extracellular  buffers. You  are  helping lower  the  total  body  acidity  and decreasing the inflammation brought on by it. You do this early on so that you don’t have a problem with advanced acidosis later. Why wait until you are acidotic before doing something?”

Notice his comment about lowering body acidity and decreasing inflammation.  We already know CKD is an inflammatory disease.  There was Digital Cover Part 2 redone - Copysomething to this. I went back to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 to tease it out.

“‘Belly fat is also much more inflammatory than fat located elsewhere in the body and can create its own inflammatory chemicals (as a tumor would).’

You can read the entire article at http://www.huffingtonpost.com/2013/03/21/body-fat-facts_n_2902867.html

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

‘The persistent inflammatory state is common in diabetes and Chronic Kidney Disease (CKD).

This is a lot to take in at once.  What it amounts to is that another way to possibility prevent the onset of CKD is to lower your phosphorous intake so that you don’t accumulate belly fat.’”

Phosphorous? Once we have CKD, we do have phosphorous restrictions. But I have never had high phosphorous readings.  Maybe I should be exploring an abundance of lactic acid as a cause of the high anion gap reading instead.

According to Heathline.com,

adam_liver_8850_jpg“Lactic acidosis occurs when there’s too much lactic acid in your body. Many things can cause a buildup of lactic acid. These include chronic alcohol use, heart failure, cancer, seizures, liver failure, prolonged lack of oxygen, and low blood sugar. Even prolonged exercise can lead to lactic acid buildup.”

I’m definitely barking up the wrong tree here.

Wait a minute. I recently started using a BiPAP since I have sleep apnea and wasn’t exhaling enough CO2. That could cause acidosis, but it would be respiratory acidosis. Say, a basic metabolic panel would expose that. Nope, that’s not it either since my CO2 levels were normal.

It looks like this is going to be one of those blogs that asks more questions than it answers. I do have an appointment with the rheumatologist on the 20th and will ask for answers then.

Until next week,

Keep living your life!SlowItDownCKD 2015 Book Cover (76x113)

Apple Cider Vinegar?

I woke up thinking, ‘apple cider vinegar.” Granted, that’s an odd thought for the first thing in the morning… or is it? Last week, I blogged about the Apple-Cider-Vinegarbenefits of drinking lemon juice in a glass of water first thing in the morning. Okay, you’ve read the blog; you know that.

What you may not know is that the blog is posted on a multitude of Facebook chronic illness sites. A reader on one of these sites commented on the blog. I don’t remember exactly what she said, but it had something to do with her taking apple cider vinegar every day to help keep her body in alkaline balance.

Ah, now that first thought of the day today is starting to make sense. Monday is blog day for me. It looks like my mind was providing me with a topic for today’s blog.SlowItDownCKD 2015 Book Cover (76x113)

I’ll bet the first question you have is why she would want to help keep her body in alkaline balance. Let’s do a little back tracking to answer that question. As per last week’s blog, Dr. Jonny Bowden, a nutritionist and health author, tells us, “Having a healthy alkaline balance helps fight germs.” No contest, I’m sure we all want to do that.

I know, I know, now you’d like to know why alkaline balance – as opposed to acidic body chemistry – does that.  I do, too.  An article on MedIndia, a respected medical site, at http://www.medindia.net/patients/lifestyleandwellness/alkaline-diet.htm explains this:

“A pH of less than 7 is acidic and a pH of more than 7 is alkaline, water being neutral with pH=7. Since one of the most important measurements of health is the pH of the body fluids, it is very important to have an acid-base balance. Any imbalance, especially those leaning towards acidic, could be associated with health disorders including obesity, tiredness, premature aging, heart disease, diabetes and cancer.”

Reminder: “The pH of a solution is a measure of the molar concentration of hydrogen ions in the solution and as such is a measure of the acidity or basicity of the solution.” Thank you, Hyperphysics at http://hyperphysics.phy-astr.gsu.edu/hbase/chemical/ph.html for the definition.

Did you catch diabetes in the MedIndia quote? That is the number one cause of Chronic Kidney Disease. This is what I wrote about that in my first What is itCKD book What Is It and How Did I Get It? Early Stage Chronic Kidney Disease,

“In fact, the U.S. has the highest rate of CKD with 210 people per million having it, and two thirds of those cases caused by diabetes or HBP.”

And that was back in 2011. Two thirds of 210 people per million. .. and we don’t know how many of them developed CKD from HBP – or diabetes. Taking no chances, I’ll opt for alkaline balance in my body, even though I already have Chronic Kidney Disease.

Next question: how does apple cider vinegar help keep a body in alkaline balance? Let’s go back to last week’s blog again.

“Body Ecology at http://bodyecology.com/articles/acidic-foods-and-acid-forming-foods-do-you-know-the-difference had exactly what I needed:

‘To clear up some of the confusion:

  • Acidic and alkaline describe the nature of food before it is eaten.
  • Acidifying foods and acid-forming foods are the same, making the body more acidic.
  • Alkalizing foods and alkaline-forming foods are the same, making the body more alkaline. ‘”

All right then, we get it that something acidic – like vinegar – could actually be alkaline once it’s ingested. And we understand that an alkaline balance can keep us healthier. But we have CKD. Is apple cider vinegar something we can take?

Kidney Hospital China at http://www.kidneyhospitalchina.org/ckd-healthy-living/961.html was helpful here, although I am still leery of websites that offer online doctor advice. They maintain that it can lower your blood pressure – a good thing since high blood pressure is not only a cause of CKD, but also can make it worse. They also consider it an anti-inflammatory, although I’m beginning to wonder if all alkaline foods are. Then they mention it helps prevent colds and removes toxins in the blood. Both will help relieve some of the kidney’s burden.

This warning was the first I’d seen in all the blogs and natural eating sites I perused for information about today’s topic… and it comes from Kidney Hospital China:

“Apple cider vinegar is high in potassium and phosphorus, so kidney disease patients who have high potassium and high phosphorus levels in blood need to avoid the intake of the drinks.”

In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, I referred to an article entitled Vegetarian diet helps kidney disease patients stay healthy in order to point out why we need to keep our phosphorous levels low:

“Individuals with kidney disease cannot adequately rid the body of phosphorus, which is found in dietary proteins and is a common food additive. Kidney disease patients must limit their phosphorous intake, as high levels of the mineral can lead to heart disease and death.”

IMG_1398

 

In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, I succinctly reminded us why we want to watch our potassium intake:

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

All in all, I think this might be a go. Do talk it over with your nephrologist or renal dietician before you start on a regiment of apple cider vinegar. I only research; they’ve been to medical school. By the way, many of these sites talked about the pleasing taste of this drink. I may have to try it just to see if any drink containing vinegar tastes good.

I have not forgotten that I promised to give you the link to the most recent podcast. I had thought the topic was going to be my Chronic Kidney Disease Awareness Advocacy, but the skillful interviewer – Mike G. – managed to cover every aspect of my life.

Until next week,

Keep living your life!

Running, but Getting Nowhere

First things first, as usual: Happy Kwanzaa to those who celebrate this week long holiday. For those of you unaware of this particular holiday, Dictionary.com tells us it is

“a harvest festival celebrated from Dec. 26th until Jan. 1st in some African-American communities.”

AudreI was introduced to it by the wondrous Audre Lorde, my neighbor, best friend, and the poet laureate of NYS back on Staten Island in the ‘80s. While I miss her terribly since her death, what’s she’s taught me is part of who I am today.  Thank you, Audre.

Let’s run up to the end of 2015 and restless leg syndrome. (Well, that was an awkward transition, wasn’t it?) I have a new reader who is confounded by it, but can’t get a doctor’s appointment soon enough for some immediate answers at this time of year so let’s see what we can find out for him.

According to The National Institute of Neurological Disorders and Stroke (Don’t let that title scare you; this is just where I went for information) at http://www.ninds.nih.gov/disorders/restless_legs/detail_restless_legs.htm

Restless legs syndrome (RLS) is a neurological disorder characterized by throbbing, pulling, creeping, or other unpleasant sensations in the legs and an uncontrollable, and sometimes overwhelming, urge to move them.”

While that makes sense, it doesn’t explain why a Chronic Kidney Disease patient might develop RLS. I went to Medscape.com at http://www.medscape.org/viewarticle/707972_4 for some sort of explanation.

“A disturbance of dopaminergic transmission has been postulated to underlie the development of idiopathic RLS, but the increased incidence in CKD might reflect hyperphosphatemia or iron deficiency.”

Whoa, Nellie (as my father used to say)! Let’s slow this down a bit.  I can see that “hyper” means over, and “phosphate” has to do with phosphorous, but how do you put it all together? MedicineNet.com did that for me.

dairy“An elevated level of phosphate in the blood. Higher-than-normal levels can be caused by ingestion of phosphate-rich foods, such as dairy products, or by kidney failure.”

Notice that kidney failure is not the only cause. So does that mean my new reader is eating too much high phosphorous food?  I don’t know. Dwayne, are you?

Being a newbie to all this, he may need a list of high phosphorous foods. Luckily, there is one in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1.DIGITAL_BOOK_THUMBNAIL

HIGH PHOSPHORUS FOOD TO LIMIT OR AVOID

Beverages

ale                                                     beer

chocolate drinks                            cocoa

drinks made with milk                 dark colas

canned iced teas

 

Dairy Products

cheese cottage cheese                  custard

ice cream                                        milk

pudding                                          cream

soups                                               yogurt

 

Protein

carp                                                  crayfish

beef liver                                         chicken liver

fish roe                                            organ meats

oysters                                             sardines

 

Vegetables

dried beans and peas                   baked beans

black beans                                    chick peas

garbanzo beans                             kidney beans

lentils                                              lima northern beans

pork ’ n beans                                split peas

soy beans

 

Other foods

bran cereals                                   brewer’s yeast

caramels                                         nuts

seeds                                               wheat germ

whole grain products

Does this help any, Dwayne? Let us know.

Next question: What’s so bad about having high phosphorous levels in the blood when you have CKD?

Back What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for the answer to that one.

What is it“This is the second most plentiful mineral in the body and works closely with the first, calcium. Together, they produce strong bones and teeth. 85% of the phosphorous and calcium in our bodies is stored in the bones and teeth.  The rest circulates in the blood except for about 5% that is in cells and tissues. Again, phosphorous is important for the kidneys since it filters out waste via them. Phosphorous balances and metabolizes other vitamins and minerals including vitamin D which is so important to CKD patients. As usual, it performs other functions, such as getting oxygen to tissues and changing protein, fat and carbohydrate into energy.

Be aware that kidney disease can cause excessive phosphorus. And what does that mean for Early Stage CKD patients? Not much if the phosphorous levels are kept low. Later, at Stages 4 and 5, bone problems including pain and breakage may be endured since excess phosphorous means the body tries to maintain balance by using the calcium that should be going to the bones. There are other consequences, but this is the one most easily understood.”

The other possible cause of RLS in CKD (alphabet soup, isn’t it?) is iron deficiency. I wrote about that a bit in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2.

“The National Kidney and Urologic Diseases Information Clearinghouse at http://kidney.niddk.nih.gov/kudiseases/pubs/anemia/anemia_508.pdf explains.

‘Healthy kidneys produce a hormone called erythropoietin, or EPO, which stimulates the bone marrow to produce the proper number of red blood cells needed to carry oxygen to vital organs.  Diseased kidneys, however, often don’t make enough EPO. As a result, the bone marrow makes fewer red blood cells.’

You can’t correct it by simply taking EPO injections.  It’s just not that simple.  To quote what I wrote in What Is It and How Did I Get It? Early Stage Chronic Kidney

‘…EPO can worsen your HBP – which can both cause and be caused by CKD.  Most nephrologists agree it’s better to take the EPO injections and increase your HBP medication to control your hypertension.’

Digital Cover Part 2 redone - CopyThat was thought to be true when I researched for the book over three  [now almost four] years ago, but since then the medical science community has discovered that synthetic EPO may be harmful to your body in that it may cause the body to produce antibodies for EOP.  Then your liver becomes involved, too, since it produces a small amount of EPO.”

Be certain to make that appointment with your new nephrologist, Dwayne.  After reading today’s blog, write a list of questions for the doctor and have someone with you during your appointment to be sure you ask all your questions and understand the answers. Keep us posted.

Mini-contest. I have one lonely copy of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 hanging around my office all by itself, just looking for a new home.  Be the first to comment on today’s blog and you’ll have yourself a new book.

Wow! Only three days left in 2015.

Until next year,

Keep living your life!

Last One

Between my indexing work on The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1  and that of Amy Hall at AmethystHarbor.com (indexer par excellence) on The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, you can email me at slowitdownckd@gmail.com for an index for the copies of the books you already bought.  I’ll need your email address and which index you need: Part 1 or Part 2 or both. This is my Chanukah gift to you.

IMG_1398

And let’s not forget What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, the twins’ big sister.

What is it

Ready for the blog? This is the last piece in a series on what I call wellness supplement plans. My good buddy, Mary Dale at (480) 415 – 7748 or Mary.Dale@rocketmail.com (love that email address) tried this one and liked it so much that’s she’s recently become a distributor. Note: Mary – thankfully – is not a Chronic Kidney Disease patient. Her information above is not for the purpose of promoting the product to CKD patients, but something to pass on to non-CKD friends should they become interested.it works

The plan Mary uses is called It Works!  You can find information that I may not be including in today’s blog at ItWorks.com. The home page allows you to choose your country and language, but offers no ingredient labels. Rather, the ingredients are listed without percentages or specifics. It struck me as more of a selling and keeping up with new products page. I couldn’t use the information for the blog.

I did find this interesting. (Mark Pentecost is the founder of the company.)

“The more I got into the education of a vitamin, I started learning more about what’s all natural versus synthetic,” says Mark. “A lot of times you’d find that a product might have 100-200 ingredients, but there wasn’t enough of each ingredient for the product to actually do what the clinicals showed they could do. You want something foundational that you know has the key ingredients to help keep us healthy and be the best we can be.”

Okay, all natural is good.  But how much of what was in each product?

Ugh. What was I going to do now? I could change the topic… but wait. Mary’s buddy, Allie Helm, called me with directions as to how to get into the site to a spot where I could see just what I needed. Great timing, ladies.

409px-Glass-of-waterI thought I’d start with Allie’s favorite, which is Greens On The Go {Orange} Alkalizing Drink Powder. The directions say to mix the powder with 8 ounces of water or fruit juice. I started looking at the ingredients when ‘silica’ at the bottom of the page caught my eye. I knew about occupational silica, but what about this in a supplement?

Livestrong.com at http://www.livestrong.com/article/288425-side-effects-of-silica-supplements/#sthash.9dJB8q7k.dpuf tells us,

“The University of Maryland Medical Center says that prolonged use of silica supplements in any form is not recommended. Severe kidney trouble may occur after prolonged use. Kidney stones have been reported in people taking silica supplements, which may be due to a buildup of silica in the body since only a small amount is needed for the body to function properly. Also, general kidney deterioration, which is irreversible, will eventually occur with excess silica in your system.”

Well, that’s out for Chronic Kidney Disease patients. Let’s take a look at Mary’s favorite product. She likes the Advanced Formula Fat Fighter with Carb Inhibitors. The directions read, “Adults take 2 tablets during or up to 60 minutes after each large meal. Drink at least 8 glasses of water daily.” Hmmm. Above the directions, there’s a caution: “Consult your physician if you… have a medical condition.”

We do. We have Chronic Kidney Disease.

I never even got to the ingredient label with this one.  My eye was snagged by the Other Ingredients, one of which was also silica. Another is dicalcium phosphate, better known as phosphate salts. Awwww. As CKD patients, we need to watch both the phosphorous and sodium in our diets without adding any in supplements. Nuts, I really liked the idea of something thatbelly fat

‘…will absorb the fat and carbohydrates from your food so that your body doesn’t.”

Not only that, but here I am doing my best to avoid Type 1 Diabetes and this product also claims that it “Helps balance blood glucose level…”

Dirty words.  I knew it was too good to be true – at least for a Chronic Kidney Disease patient.

I guess we’ve learned our lesson this month, ladies and gentlemen.  While each of the products may or may not be just the ticket for those without CKD, we do have CKD… which means they are not all for us. I am disappointed, but as I always say, “My kidney function comes first.”

Talking about that:

WHAT: Free Community Health ScreeningNKF-logo_Hori_OB
WHEN: Saturday, December 5, 2015 from 8:00am-1:30am (appointments highly encouraged)
WHERE:  First Institutional Baptist Church | 1411 E. Jefferson Street, Phoenix, AZ 85034
WHO: Participants must be 18 years of age or older AND
a) have a family member (father, mother, brother, sister) with diabetes, heart disease or kidney disease
OR b) participant must have a personal history of diabetes or high blood pressure.

TO MAKE AN APPOINTMENT: Please call (602) 840-1644 English / (602) 845-7905 Spanish

Path to Wellness is a free community health screening program provided by the National Kidney Foundation of Arizona in collaboration with the Cardio Renal Society of America and other local health organizations.  Screenings are held throughout the state of Arizona on a sponsored basis, and are open to the public.

They provide free blood and urine testing, which is evaluated on site using point-of-care testing devices to assess for the risk of diabetes, heart and kidney diseases. Those screened are also presented with chronic disease management education, an overall health assessment (weight, blood pressure, etc.) and a one-on-one consultation with a physician. Enrollment opportunities are offered for a follow-up 6-week series of Healthy Living workshops that teach chronic disease self-management skills.

Until next week,

Keep living your life!

Not For Us

What an incredible weekend. I’m involved with Landmark Worldwide and spent a truly edifying three days at a Wisdom Unlimited Weekend (Comment if you’d like to know more about this.) and then had the pleasure of seeing my wickedly funny ventriloquist cousin – Steve Bernard – Jackperform at The Comedy Spot here in Arizona.  You may have noticed the blog is a bit late today.  Gee, I wonder why….

Before I forget, Janet Cook of JuicePlus received a response from the company’s medical advisor addressing my concerns about the amount of phosphorous and potassium in their products.

“Two Vineyard Blend capsules provide less than 30 milligrams of potassium and less than 20 milligrams of sodium, less than 10 mg of phosphorus….The potassium content of the daily recommended amount of Juice Plus+®, two Juice Plus+ Orchard Blend® capsules and two Juice Plus+  Garden Blend® capsules, will provide approximately 45 milligrams of potassium. Two Juice Plus+ Vineyard Blend® capsules provide approximately 30 milligrams of potassium. The phosphorus content of a daily adult serving of Juice Plus+  Orchard Blend® and Juice Plus+ Garden Blend® is less than 10 milligrams.”

That certainly takes care of my going over the limit of sodium, phosphorous, and potassium concerns which place the decision as to whether or not to indulge in this product smack dab back in your hands.  Thanks to Janet for quickly and efficiently getting this information to me.  I do appreciate the transparency of this company.

sad faceConfession time.  When I was a younger woman dealing with a newly diagnosed ill daughter, a difficult order of protection for my children, and an unexpected dumping by a boyfriend who had been a friend since high school, I threw up my hands and decided I needed help to control my weight – the one thing I thought I might be able to control.

A trusted friend introduced me to her new business and its products.  It was Shaklee, which is still in business over two decades later.  I can’t be certain this is the same product, but I think this was what I was taking, especially since I was a chocoholic at the time. (Ah, those were the days, my friends.) I also had never heard of soy at the time.

Shaklee Life Energizing Shake  canister

New delicious meal shake contains nutrients clinically proven to help create the foundation for a longer, healthier life. It is designed to increase your energy, help you achieve a healthier weight, and provide incredible digestive and immune support from fiber and probiotics.

Available in soy and non-soy formulas

The Shaklee Life Energizing Shake Mix comes packed with:

  • 24 grams* of protein, including 16 grams of plant-based, non-GMO protein
  • Added leucine to help preserve lean muscle and achieve a healthier weight
  • A powerful combination of prebiotics and one billion CFU of patented probiotics
  • Omega-3 (ALA) to support heart and brain health

And Life Shake:

  • Gluten free, lactose free, low glycemic, and Kosher
  • Contains no added artificial flavors, sweeteners or preservatives

* When prepared as directed with 1 cup of nonfat milk.

You can take a look at this yourself on their website at https://www.shaklee.com/us/en/shop/healthyweight/shaklee180meals/product-_p_shaklee-life-energizing-shakep. My buddy is no longer selling the product and has regained all the weight she lost and more.  Me, too.  That’s why I wonder if these ‘miracles,’ are such miracles since they don’t work if you don’t keep taking them.

Okay, enough philosophy, let’s take a look at this product through the eyes of a Chronic Kidney Disease patient.  When I clicked on Features for this product, I found more information.

  • 24 grams* of protein, including 16 grams of proprietary, plant-based, non-GMO protein with precise ratios of 9 essential amino acids, optimized for high protein quality
  • Non-soy formula contains an exclusive blend of sacha inchi, rice, pea and potato protein

As a CKD patient, I don’t think I’d like that. My renal diet allows 5 ounces of protein daily rather than the 24 grams each shake contains. I couldn’t find the information on the website, but vaguely remember having two shakes a day and a balanced meal. Two shakes? That’s 48 grams of protein. To put it in perspective, that’s less than 2 ounces a day, but I’ll pass. I can think of other ways I’d like to have my protein.

Just for fun, let’s look at the other two Ps and S, too.  The sodium is not bad at 250 mg. a day for two shakes. The potassium is 620 mg. for two shakes a day, also not despicable. As usual on nutritional labels these days, the phosphorous is not listed. However, we do know that milk, even non-fat milk, is a high phosphorous food.Label

Wait a minute, I just noticed something else. Are you prone to kidney stones? If so, you need to avoid high oxalate foods. Thought would have meant no chocolate shake for me.

I was curious about sacha inchi protein powder since it was new to me. About.com at http://altmedicine.about.com/od/herbsupplementguide/a/Sacha-Inchi.htm provided the following information.

Sacha inchi (Plukenetia volubilis) is a plant native to Peru. The term “sacha inchi” typically refers to edible seeds produced by the sacha inchi plant. sacha inchiAlso known as sacha peanut, mountain peanut, or Inca peanut, these seeds have a nut-like flavor when roasted. Often marketed as a “superfood,” sacha inchi is said to offer a variety of health benefits.

So it looks like young(er) and foolish is the way I was. There’s no double about this one: with our protein restrictions, it’s not for CKD patients.

Topic change: In keeping with my strict policy of using all the profits from my kidney books to further spread awareness of CKD and ways to slow down the progressive decline of kidney function once you have CKD, I did the smart thing. I turned to a professional indexer to index The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2.Book CoverIMG_1398

Whether they’re for you, a newly diagnosed patient, friends, family, or anyone else, these books make excellent Christmas and Chanukah presents for those in the renal community and others who want to know about CKD. By the way, you can now order them in Sweden on Bokus.com.

I hope you have a wonderful Thanksgiving. I’m sorely tempted to empty the jar of our daily gratitudes on that day, but I’ll be good and wait until New Year’s.

Until next week,

Keep living your life!

Here’s Another One…

And so the inquiry continues. Considering some of the surprising comments I’ve received, it’s time to make it clear in the very first paragraph of today’s blog that I am neither endorsing nor condemning the products  I write about. Like me, some of my readers have expressed interest in them and wondered if we could take them as Chronic Kidney Disease patients.

fruits and veggiesI liked Juice Plus, but as the first blog of the month explained, that won’t work for us for a number of reasons. By the way, Janet Cook has requested that the doctor who is the company’s medical advisor answer some of the questions I brought up in the blog. Last week, I explained why Pruvit – enjoyed by many I know – would not be a good choice for us.

This week, it’s Isagenix.  I thought it was interesting that their website is tailored according to the country in which you live. The URL for the United States is http://www.isagenix.com/?sc_lang=en-US.  I have an even more personal interest in this one since one of my daughters has just begun their program. She’s interested in becoming healthier than she is right now since, even exercising assiduously, she’s beginning to notice her changing body and the internal sensations that displease her.iasgenix

From the website and discussions with my daughter and her friends who adhere to this regiment, it seems like the shakes are the basic products. My mouth started watering when I read the names: Creamy Dutch Chocolate, Creamy French Vanilla, and Strawberry Cream.

Uh-oh, cream. That must mean milk! Sure enough, each contains both milk protein concentrate and low-heat nonfat milk. That means I’m out since I’m lactose intolerant.  But I was curious about low-heat nonfat milk since I’d never heard of it before.

Diary America at http://www.dairyamerica.com/products/grade-low-heat explained it this way.

low fatSpray Dried Grade “A” Low Heat Nonfat Dry Milk is the powder resulting from the removal of the fat and water from fresh Grade “A” Milk. It contains the lactose, milk proteins and milk minerals in the same relative proportions as they occur in fresh milk. The product is made from fresh, pasteurized nonfat milk to which no preservative, alkali, neutralizing agent or other chemical has been added.

What is more important to us as CKD patients is the chart I found when I scrolled down the page. It’s based on 100 grams.

Minerals

Calcium 1248 mg
Iron 0.4 mg
Magnesium 110 mg
Phosphorus 993mg
Potassium 1674 mg
Sodium 494 mg
Zinc 4.08 mg

The serving size of the shakes is 2 scoops which equal between 59-61 grams depending on the flavor.  The program calls for two shakes a day so we need to double that for between 118 to 122 grams a day.  I’ll be doing some rounding off here, but that means you’d be taking in about 1048 mg. of phosphorous per day. Ummm, my daily limit is 800 mg. I think there just might be a phosphorous problem with low-heat nonfat milk for CKD patients here, she understated.

Now that’s a bit convoluted and based only on the low-heat milk powder that is one of the ingredients in the Isagenix shakes.isagenix shake

Let’s try this the simple way. Each shake contains between 348 and 350 mg. of potassium.  Let’s take an average of 349. Multiply that by two since you drink two shakes a day on this plan and you have 698 mg. of potassium. That doesn’t seem so bad since my limit is 3000 mg. per day.

Oh wait, there are also snacks and a full meal required in this program – as I understand it. The IsaLean Bars (snacks) range from 130 to 480 mg. of potassium. We need to double that since two per day are necessary. Let’s say we’re partial to Chocolate Cream Crisp which has 480 mg. of potassium. That’s an additional 960 mg. of potassium. So now we’re up to 1178 mg. of potassium.  That’s not over my limit, but I still have a balanced meal to account for.  Can it be done? Sure. How? Carefully, very carefully.

salt Let’s take a look at the sodium in the products since that’s another big restriction with Chronic Kidney Disease. My limit is 2000 mg. per day. 240-265 mg. of sodium are in each shake. Double that for the two shakes a day and you have between 480 and 530 mg. daily.  Add in two snacks at between 60 and 140 mg. of sodium for another 120 to 280 mg. of sodium. Totaled, you have between 600 and 810 mg. of sodium. There’s still plenty left over for that balanced meal.

However, there are substances that are hard on the kidneys in these shakes: flax seed powder and psyllium seed powder are just two that jumped out at me from the ingredients list. The shakes also contain alfalfa leaf which is often used to increase urine production.

I am envious my daughter can use this product to get herself back to the kind of body condition she’s used to, but as a CKD patient, I’ll have to say no, I can’t use this product … no matter how much I want to. I’ll take preserving my remaining kidney function to an easier way to get back into shape any day.

IMG_1398

 

On another note, I was astounded to discover that all three of my Chronic Kidney Disease books are on sale via Amazon in a dozen different countries.  Whenever I finally think of checking on their progress, I find another country added. In addition to indexing the books, I’m considering offering the print copies on Barnes and Noble.com.  Any thoughts on that? I was also considering offering What Is It and How Did I Get It? Early Stage Chronic Kidney Disease on Nook as well as Kindle since my digital books are less expensive than the print ones. Does that ring anyone’s bell?What is it

On a personal note, I am happy to report there is no travel scheduled until next year, so I get to stay in my very own office working on kidney projects.  Oh, happy day!

Until next week,

Keep living your life!

It Would Have Been Nice…

NYC I’m just back from a wonderful week in New York where people traveled great distances to see me, gladly opened their homes to me, and introduced me to interesting – very interesting – people. Between my family and friends, I haven’t felt this loved in a long time…and I always feel loved.

But one thing bothered me. I couldn’t seem to get enough fruit and vegetables each day since I was staying with people who ate differently from me, had different schedules than I did, and took me out to restaurants quite a bit.

Some days, there were no vegetables at all in my diet.  I didn’t like that, so I started playing around with ideas of how I could avoid this problem when next I travel visiting others. I seem to have no problem when I’m by myself during my travels.

This time, I had stopped at little markets on my way from one place to another, but no one was willing to sell me half a banana (for example) and, considering the timing of my market visits, some hadn’t received their fresh fruit and vegetable deliveries yet or had already sold out of them.  Mind you, I’m not talking about big chain supermarkets here. There weren’t any near the elevated or subway train stations I used.fruits and veggies

That’s when I remembered Janet Cook who is a Juice Plus representative, so I took a look at her website. On, my! This is a product I wish I had discovered before being diagnosed with Chronic Kidney Disease.

This is how Juice Plus+ describes itself on her website at http://janetcook.juiceplus.com/content/JuicePlus/en/what-is-juice-plus/what-is-juice-plus.html

Juice Plus+ is whole food based nutrition, including juice powder concentrates from 30 different fruits, vegetables and grains. Juice Plus+ helps bridge the gap between what you should eat and what you do eat every day. Not a multivitamin, medicine, treatment or cure for any disease, Juice Plus+ is made from quality ingredients carefully monitored from farm to capsule to provide natural nutrients your body needs to be at its best.

No great claims, just common sense getting the fruits and vegetables you may be missing every day.  Natural nutrients. Oh, joy! But wait… what’s this about concentrate?

The Cambridge Dictionary at http://dictionary.cambridge.org/us/dictionary/english/concentrate offers us both the noun (name) and verb (action) definitions for concentrate.

Noun – a substance from which water or other substances have been removed

Verb – to make a ​substance ​stronger or ​purer by ​removing ​water or other ​substances

We’re used to the noun definition, but did you realize that, according to the definition of the word as a verb, concentration makes a substance stronger?

I scoured the website for the concentration’s equivalence of each fruit and vegetable but couldn’t find them. Then I realized that’s futile. If they are in the mix, how can you figure out how much of it is in the concentrate?

Janet was quick to offer me the name and email address of their consulting doctor when I explained my quandary to her. I liked that: transparency about their product.

She’d also asked me repeatedly which fruits and vegetables I couldn’t have.  Much to my chagrin, I realized I’d never answered her. I downloaded the ingredients in two of their products and compared them to the Northern Arizona Council on Renal Nutrition Diet which I follow.

 Juice Plus+ Orchard & Garden Blend

20 FRUITS, VEGETABLES, AND GRAINS

  • Apple • Acerola Cherry • Beet • Cranberry • Date • Orange • Pineapple • Papaya • Peach • Prune • Broccoli • Brown Rice Bran • Cabbage • Carrot • Garlic • Kale • Oat Bran • Parsley • Spinach • Tomato •

Juice Plus+ Orchard, Garden Blend & Vineyard Blend

30 FRUITS, VEGETABLES, AND GRAINS

  • Apple • Acerola Cherry • Beet • Cranberry • Date • Orange • Pineapple • Papaya • Peach • Prune • Broccoli • Brown Rice Bran • Cabbage • Carrot • Garlic • Kale • Oat Bran • Parsley • Spinach • Tomato • Artichoke • Bilberry • Blackberry • Black Currant • Blueberry • Cocoa • Concord grape • Cranberry • Elderberry • Pomegranate • Raspberry •

Again, I was taken with the transparency.  However, I found another problem for CKD patients here. I am restricted to 3000 mg. of potassium and 800 mg. of phosphorous daily.  Artichokes and dates are high potassium food. And don’t forget the products are concentrated which means the potassium count will be even higher.  Brans, bilberry, and cocoa are high in phosphorous.

Then there’s the problem that our kidneys are not so great at filtering waste from our bodies when we have CKD. That means the excess potassium and phosphorous stay in our bodies longer and more of it stays.

Globe-ArtichokeAccording to WebMD at http://www.webmd.com/a-to-z-guides/hyperkalemia-causes-symptoms-treatments?page=2

Hyperkalemia {That’s the medical term for excess potassium.} is a common cause of life-threatening heart rhythm changes, or cardiac arrhythmias. It can lead to an emergency condition called ventricular fibrillation. In this condition, the lower parts of your heart flutter rapidly instead of pumping blood.

Untreated, an extremely high amount of potassium in your blood can make your heart stop beating, causing death.

Excess phosphorous is a bit more complicated. Healthline at http://www.healthline.com/health/phosphorus-in-diet#TooMuchPhosphorous6 informs us of the following.cocoa

According to the NIH {This refers to the National Institutes of Health.}, it’s rare to have too much phosphorus in your blood (NIH, 2011). Typically, this problem only develops in people with kidney disease or those who have problems regulating their calcium.

However, too much phosphate can be toxic. An excess of the mineral can cause diarrhea, as well as a hardening of organs and soft tissue.

Having too much phosphorus in your blood can also cause it to combine with calcium, forming mineral deposits in your muscles.

High levels of phosphorus can also affect your body’s ability to effectively use other minerals, such as iron, calcium, magnesium, and zinc.

What is itThere’s more discussion of how CKD can affect the amounts of what we can tolerate and why in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. This is one of the topics I found the most confusing when I was first diagnosed.

Am I disappointed that I can’t take this product? A little, but not enough to take the chance of hastening the decline of my kidney function even further. Everything we put in our mouths – food or medication – affects our CKD.

Say, were you part of the book giveaway?  Would you like me to congratulate you publicly on the blog? Let me know.  And look for another giveaway when the indexes for the twins are done.IMG_1398

Until next week,

Keep living your life!

Time Flies When You’re Having Fun

IMG_1625Last week, Bear and I were in Las Vegas for a mini-family reunion. It was my mother’s nephew’s… let’s just say it was a combination of blood relatives and those we consider relatives without the blood connection.

What with the complimentary hotel room at the absolutely gorgeous SLS (which we understand was formerly the Sahara) and the gift of tickets to the outrageous show ‘Diva’ (male impersonators of female celebrities), an edifying tour of The Neon Boneyard, a family Las Vegas style buffet at Red Rock Casino, and a leisurely stroll down the overly-stimulating Fremont Street, we had a wonderful time.

I even got in my usual 20 minutes of gambling. I don’t really have tolerance or a liking for it, but it seemed the right thing to do since that was why the hotel gave us the two nights gratis. I won.IMG_1638

But in another way, I lost. My cousin Amy wasn’t there. She was part of this family. Her husband was there. Her uncle was there. Her mother and brothers were, but she wasn’t.  Three years ago she died of cancer.

She died within one week of my dearest, closest buddy on earth who also died of cancer. My buddy died of colorectal cancer. She’d refused any contact with the medical community for the last decade of her life and she paid the ultimate price for it.  A colonoscopy could have saved her life.

Almost five years ago, I had a colonoscopy… and now it’s time to have one again.  While this is not my favorite activity, I am willing to do so since cancer runs in my family and I’ve already had a bleeding polyp. These are not issues I usually share and, yes, it’s a bit awkward for me but if I can convince even one person who’s presently nauseated just thinking about colonoscopy to have one, it’s worth my personal discomfort.

While the term is becoming common, not everyone knows what a colonoscopy is. WebMd at http://www.webmd.com/colorectal-cancer/colonoscopy-16695 explains.

colonoscopy Colonoscopy is a test that allows your doctor to look at the inner lining of yoularge intestine (rectum and colon). He or she uses a thin, flexible tube called a colonoscope to look at the colon. A colonoscopy helps find ulcerscolon polyps, tumors, and areas of inflammation or bleeding. During a colonoscopy, tissue samples can be collected (biopsy) and abnormal growths can be taken out. Colonoscopy can also be used as a screening test to check for cancer or precancerous growths in the colon or rectum (polyps).

The colonoscope is a thin, flexible tube that ranges from 48 in. (122 cm) to 72 in. (183 cm) long. A small video camera is attached to the colonoscope so that your doctor can take pictures or video of the large intestine (colon). The colonoscope can be used to look at the whole colon and the lower part of the small intestine. A test called sigmoidoscopy shows only the rectum and the lower part of the colon.

Before this test, you will need to clean out your colon (colon prep). Colon prep takes 1 to 2 days, depending on which type of prep your doctor recommends. Some preps may be taken the evening before the test. For many people, the prep for a colonoscopy is more trying than the actual test. Plan to stay home during your prep time since you will need to use the bathroom often. The colon prep causes loose, frequent stools and diarrhea so that your colon will be empty for the test. The colon Normalprep may be uncomfortable and you may feel hungry on the clear liquid diet. If you need to drink a special solution as part of your prep, be sure to have clear fruit juices or soft drinks to drink after the prep because the solution tastes salty.

You have CKD; this is not the prep you will be using.

The National Institute of Health at https://www.nlm.nih.gov/medlineplus/colonoscopy.html suggests you have a colonoscopy for the following reasons.

  • To look for early signs of cancer in the colon and rectum. It may be part of a routine screening, which usually starts at age 50.
  • To look for causes of unexplained changes in bowel habits
  • To evaluate symptoms like abdominal pain, rectal bleeding, and weight loss

Let’s talk about prep a bit more. You cannot take the usually prescribed Fleet enemas or anything with oral sodium phosphate. Get it?  Sodium?  Phosphate?  Both bad news for CKDers.  One possible alternative is a polyethylene glycol (PEG) solution such as Miralax.  As usual, check with your nephrologist.

DucolaxDucolax is also often prescribed as prep for the procedure, but everydayhealth.com at http://www.everydayhealth.com/drugs/dulcolax-laxative makes clear it’s not automatically safe for CKD patients. (Bisacodyl is the compound name; Ducolax is the brand name.)  Take note of the first item on the list.

If you have any of these other conditions, you may need a dose adjustment or special tests to safely use bisacodyl:

  • kidney disease;
  • trouble swallowing;
  • a history of bowel obstruction, diverticulitis, ulcerative colitis, or other intestinal disorder; or
  • if you are taking a diuretic (“water pill”).

This is decidedly turning into a two part blog.  More on the curiously challenging concept of colonoscopy next week.

We’re not the only ones who took a vacation. Here’s a picture of the man behind the title of Loyal Reader, Geo De Angelo, on his vacation:

003

Meanwhile, back at the ranch (better known as my office), I wonder if you’re one of the winners in the GiveAway for What Is It and How Did I Get It? Early Stage Chronic Kidney DiseaseWhat is it. You know, the GiveAway in which I paid for ten of each eighth book bought. If you are, please announce yourself either here in the comments section, on the Facebook page – https://www.facebook.com/WhatHowearlyCKD – or on Twitter @SlowItDownCKD so we can publicly congratulate you. If you haven’t seen the GiveAway yet, you can at http://www.amazon.com/What-How-Did-Get-Chronic/dp/1457502143/ref=sr_1_1?ie=UTF8&qid=1445197041&sr=8-1&keywords=What+Is+It+and+How+Did+i+gET+IT%3F+Early+stage+chronic+kidney+disease.

If you missed it, no worries.  I’m presently working on a different sort of GiveAway with a certain Facebook Kidney Disease Support Group.  More on that next week when I have all the details. Oh, and let’s not forget about the twins (presently being indexed) …IMG_1398

Until next week,

Keep living your life!

Do I or Don’t I?

cruiseThree weeks ago, Bear and I embarked on my very first cruise.  For years, he’s been asking me to take a cruise.  For years, he’s been asking me to go to Alaska.  For years, he’s been asking me to ride on the Alaska Railroad. This is my second anniversary gift to him.

What makes it even better is that friends and family came together to take care of the wondrous cancer-free Bella in our home for the whole time we were away. There were people in and out at all times of the day and night to be with her.IMAG0269 (1)

Which brings us to today’s topic. Months ago, I wrote about a test my nutritional counselor suggested I take in order to take care of myself. I was warned it would be six weeks or more before I received the results of this blood draw. They’re finally arrived.

The test is Genova Diagnostics’ NutrEval for FMV amino acids. What was tested were antioxidants, B vitamins, minerals, essential fatty acids, digestive support, other vitamins, and amino acids. Pretty comprehensive, huh?

GenovaSince I need to research how Chronic Kidney Disease interplays with what supplements were recommended for me, I thought I’d share the ‘high need’ ones with you. First on our hit parade is in the antioxidant category. I’m glad I don’t need CoQ10 since that was in the normal range. Now I know why I ignore those tablets in the pharmacy. Vitamin A/Carotenoids, Vitamin C (Uh-oh, must have gone overboard avoiding this after the kidney stones), Vitamin E/Tocopherols were all in the borderline range, where I’ll let them stay for now.

a-Lipoic Acid, which is the same as alpha lipoic acid, however was in the high need range… as in a suggested dosage of 200 mg. Apparently the main food sources of this are:

organ meats which are high in phosphorouscpy broccoli.2

spinach which is one of the highest potassium foods

broccoli which I eat like it’s going out of style.

Lesser food sources are tomatoes, peas, Brussels sprouts and brewer’s yeast.

Davita.com has this to say about phosphorous. You can read more about it at http://www.davita.com/kidney-disease/diet-and-nutrition/diet-basics/high-phosphorus?-investigate-the-cause-when-you-have-kidney-disease/e/8003

Phosphorus is the second most common mineral in the body after calcium and is needed for good health. However, people with chronic kidney disease (CKD) have difficulty eliminating extra phosphorus from their bodies.

I’ve only got three servings of vegetables a day on the renal diet so I don’t want to waste them on high potassium choices or vegetables I don’t care for.  As for organ meats, I rarely eat red meat and don’t like the taste of these (Funny how I can remember how they tasted when I’ve lost so many other memories, isn’t it?). I can understand the deficiency.

Now this is peculiar. In researching this, I came across http://www.AlphaLipoicAcid.com which clearly states:

thiaminIf you’re deficient in thiamine (vitamin B1), a condition often associated with alcoholism, you shouldn’t take alpha lipoic acid.

The latest sources listed on their site are from 2007. That’s too long ago.

While I don’t drink, the NutrEval also showed I was deficient in and had a high need for Thiamin – or B1 – to the tune of 50 mg. I’d have to find another source to see if I can take this supplement.

I went to WebMD which is usually helpful to me. Hmmm, their latest source is 2012 but the site warns about taking this supplement with diabetic medication. It’s never easy, is it?

I seem to be going in circles here, so I’ll try this another way. According to my NutrEval Interpretation,

a-Lipoic Acid plays an important role in energy production, antioxidant activity (including the regeneration of vitamin C and glutathione), insulin signaling, cell signaling and the catabolism of a-keto acids and amino acids.

Mind you, this was taken from the Interpretation At-A-Glance for the patient.  The physician’s is even more detailed. I just looked at seven differentIMG_1229 sites, some selling this supplement, and read parts of three different books. Each one declares that a-Lipoic Acid should not be taken if you have a thiamine deficiency.

So do I take the supplement or not? Since I’m still worried about taking it when it’s suggested I not take it while being B1 deficient, I will send the physician report to my nephrologist.

Let’s flip this baby and see if I get anywhere researching thiamin deficiency.

Oh, my goodness!!!! I went to the Mayo Clinic at http://www.mayoclinic.org/drugs-supplements/thiamine/interactions/hrb-20060129 only to discover that thiamin and Metformin – which I take for pre-diabetes – don’t mix.

Caution is advised when using medications that lower blood sugar. People taking drugs for diabetes by mouth or insulin should be monitored closely by a qualified healthcare professional, including a pharmacist. Medication adjustments may be necessary.

Furthermore, there’s a caution on the site that supplements are not approved nor regulated by the FDA. All that’s offered are approximate dosages by age and length of duration that are LIKELY acceptable.  I’m becoming very uncomfortable with this.

So I am deficient in a-Lipoic Acid – whose supplementation may also affect my blood glucose – but am urged not to take it if I have a thiamin deficiency. Then I am urged not to take thiamin supplementation since it may interfere with the Metformin.  Or is this a hearty suggestion to stop the Metformin?  Sorry, folks, this is something for my nephrologist to help with.  I guess we’ll just have to wait until I can contact him.

It’s not life threatening and we were in Vancouver for five days before boarding the ship which gave me a lot of time to ruminate. I’m wondering if this test is the deciding point between alternative medicine and my nephrologist’s kind of medicine.

VancouverShould push come to shove, I’m not ready to leave my nephrologist and rely on alternative medicine. I’ve done well at keeping my CKD at stage 3A for the last eight years… with the help of my nephrologists. I’m not saying that you should do as I do, simply that this would not be my choice and I’d urge you to think carefully if it’s your choice.

I’m going back to looking at our pictures of Alaska’s Inside Passage.

Until next week,

Keep living your life.Digital Cover Part 2 redone - CopyDIGITAL_BOOK_THUMBNAIL

Me and My Llama, Going to the Dentist Today

No, I’m not crazy and I’m not talking about one of the llamas living only a few miles from my home. Nor am I ignoring the rules of structure.

Today’s title is from the lyrics of a song sung on the children’s television show Sesame Street just about the time my first born (the ever interesting Ms. Nima Beckie)llama had her first dental appointment.  Believe me, it helped reduce her anxiety – and mine – about that appointment.

You guessed it.  I’ve been getting questions about Chronic Kidney Disease and dental health. I know some readers are saying, “Huh?” I did, too, until I did some research. (Maybe my brand should be, “I research so you don’t have to,” instead of “SlowItDownCKD”?)

By the way, in fulfilling an assignment for Landmark Worldwide’s Wisdom Unlimited course I discovered I first started researching in fifth grade.  My topic? Ladies in Waiting. My research results? Dismal.  I sure am glad those days of encyclopedias and library books only for research are over. Oh wait, I was writing about dental health.

You’ve already read my previous blogs about the safety of nitrous oxide (laughing gas) and Novocain, so today’s blog is going to be about the laughingconnection between CKD and dental problems.  If you remember that diabetes is the leading cause of CKD, you’ve already figured out that the diabetes itself could be causing the dental problems with people suffering from both CKD and diabetes.

But what about those of us who don’t have diabetes.  Why could we be prone to dental problems? I started my research with DaVita at http://www.davita.com/kidney-disease/overview/symptoms-and-diagnosis/dental-health-for-people-with-kidney-disease/e/4731

A study in the Journal of Clinical Periodontology reported that people with kidney disease and those on dialysis are more likely to have periodontal disease and other oral health problems than the general population. Buildup of bacteria in the mouth can cause infection. Because people with kidney disease have weakened immune systems, they are more susceptible to infections.

Journal of CLinical Perioldontolgy coverBone loss in the jaw can occur in those with kidney disease. Calcium imbalance contributes to loss of calcium from the bones resulting in weak bones. Weak bones can cause teeth to become loose and potentially fall out. The best way to help prevent bone loss is to make sure calcium and phosphorus levels stay within the goal range.

Oh, there is so much to go with there! I immediately started digging into What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for whatever it was that was tickling my memory and found it in the glossary on page 136.

What is itVitamin D: Regulates calcium and phosphorous blood levels as well as promoting bone formation, among other tasks – affects the immune system.

We know vitamin D can be a real problem for us.  How many of you are taking vitamin D supplements? Notice my hand is raised, too.  How many of you read my blogs about vitamin D?  Good!  The rest of you, it might be a good idea to use the topic search to find and read them. You know, “I research so you don’t have to,” etc.

I’ve read again and again in the online support groups that there are major questions about controlling your phosphorous intake, specifically keeping it low. Keep that in mind when you think of CKD and dental health.

plaqueThe biggest part CKD plays in dental health and periodontic issues is that of lowering your immune system. Remember my writing about proteinuria, something you can develop with CKD? Quick reminder: this is just what it sounds like; protein leaks into the urine. The problem is that antibodies are made up of protein. Antibodies is defined by Dictionary.com at http://dictionary.reference.com/browse/antibodies as

A protein substance produced in the blood or tissues in response to a specific antigen, such as a bacterium or a toxin, that destroys or weakens bacteria and neutralizes organic poisons, thus forming the basis of immunity.

Lose lots of protein into your urine and you’re losing some of your immunity. In other words, you’re open to infection.

How do you get an infection in your mouth in the first place, you ask. Think about plaque. This is what the National Center for Biotechnology Information, part of the National Institutes of Health, offered at http://www.ncbi.nlm.nih.gov/books/NBK8259/

Dental decay is due to the irreversible solubilization of tooth mineral by acid produced by certain bacteria that adhere to the tooth surface in bacterial communities known as dental plaque.interior of tooth

In other words, you eat and the acid in your food combines with bacteria to form plaque which then starts to demineralize your tooth enamel.  Usually, you have the antibodies in your immune system to prevent cavities… although we probably all know someone without CKD who doesn’t.  You, as a CKD sufferer, do not have the necessary antibodies.  The CKD has already compromised your immune system.

This is what the University of Maryland Medical Center at http://umm.edu/health/medical/reports/articles/periodontal-disease has to say about gingivitis and periodontitis.gingivitis

Gingivitis is an inflammation of the gingiva, or gums. It is characterized by tender, red, swollen gums that bleed easily and may cause bad breath (halitosis). Gingivitis can be treated by good dental hygiene, proper diet, and stopping smoking. Untreated gingivitis can lead to periodontitis.

Periodontitis occurs when the gum tissues separate from the tooth and sulcus (Me, here. That means  the space between the tooth and the gum.) forming periodontal pockets. Periodontitis is characterized by:

Gum inflammation, with redness and bleeding

Deep pockets (greater than 3 mm in depth) that form between the gum and the tooth

Loose teeth, caused by loss of connective tissue structures and bone

Plenty of space for bacteria to sneak in and attack your already compromised immune system.

I realize this is light weight research for those who are already suffering from these ailments, but hoped only to enlighten those of us who’d never even considered these possibilities and maybe, just maybe, help you understand just a bit better.

Say, if you live in Arizona, don’t forget about this:

free Path to Wellness health screening in Mesa at Adelante Healthcare 1705 W. Main St. on the 20th from 8 to 1:30 this Saturday.

Until next week,Digital Cover Part 2 redone - CopyDIGITAL_BOOK_THUMBNAIL

Keep living your life!

Water, Water Everywhere

11194487_10206480685479477_4614482644786730988_oYesterday was Mother’s Day here in the U.S.  Here’s what I posted on that day:

When I grew up, mothers were all married women. Not anymore! Happy Mother’s Day to the moms who are moms in a lesbian relationship, the dads who are moms in a gay relationship, the single dads who are both mother and father, the moms in straight relationships, the older siblings bringing up their brothers and sisters, the single moms and those who have lost their child. You’re all still mothers and I relish enjoying this day with you.

I hope yours was a very happy one, even if your children are far away like my Nima who is in New York. Nima

This mother (two biological daughters, two step-daughters, two significant others) has been writing about sea sickness remedies, both medical and natural, for the past two weeks.  That got me to thinking about another kind of water and why we need it.

I’ve mentioned that I see a nutritional counselor to help me prevent my pre-diabetes from becoming diabetes. We all know I need 64 oz. of fluid intake a day as a Chronic Kidney Disease patient, but it’s not all water.  There’s my beloved 16 ounces – or two cups – of coffee a day plus any solid that turns to a liquid when melted (think ices) and the liquid in fruits such as watermelon.  By the way, did you know that our bodies are 50-75% water depending upon our health and age?diabetes equipment

Debbie, my nutritional counselor, kept hitting the need to hydrate.  Until she realized I already take this into account daily, she asked me to keep count of the number of eight ounce glass of water I drank each day.  That’s how important she felt it was.  We know that; we’re CKD patients.

But, have you ever wondered why it’s so important that we keep hydrated?  That’s one of those questions that was answered when I was first diagnosed, but – being who I am – I don’t remember the answer.  And that got me to wondering if you did.

The most obvious answer is that we need water so that our metabolism can function at its best. This is important so we have energy and build new cell materials. Let’s explore this a bit more.

The Oxford Dictionary defines catabolism (love that name) as

the breakdown of complex molecules in living organisms to form simpler ones, together with the release of energy; destructive metabolism.

In this case, ‘destructive’ is a positive.  No destruction of complex molecules = no release of energy.  Heaven knows we already have enough problems with energy as CKDers.

I used the Medical-Dictionary at http://medical-dictionary.thefreedictionary.com/anabolism for an explanation of anabolism.

The phase of metabolism in which simple substances are synthesized into the complex materials of living tissue.

So catabolism is the function of metabolism which breaks down complex molecules for energy and anabolism is the function that builds up cell material.metabolism

Oh, almost forgot – metabolism simply means change. How can I remember a college etymology lesson from fifty years ago, but not remember what my nephrologist told me seven years ago????

All right, but why the need to hydrate? While a commercial site, Nestle Waters at http://www.nestle-waters.com/healthy-hydration/water-fonctions-in-human-body (I did wonder about that ‘o’ in fonctions.) lists the five reasons we need water.  Notice number five and remember that toxins need to be eliminated, too.  That’s the job of the kidneys… and they need water to do it.water to cells

  1. Cell life
  2. Chemical and metabolic reactions
  3. Transport of nutrients
  4. Body temperature regulation
  5. Elimination of waste

As I researched, I hit medical sites, sports sites, pregnancy sites, elder care sites, and even pediatric sites.  All included hydration in their how-to-stay-healthy advice.

As CKDers, we know that an excess of sodium, phosphorous, potassium, and protein is not good for us.  Guess what flushes out the excess.  That’s right.  Your kidneys filter it from your blood, it’s converted to urine, and leaves your system.  Of course, you don’t want to overtax your already compromised nephrons by going over your daily limits of each of the above.

We’ll pause for a moment here while you go get a drink of water.

409px-Glass-of-waterRefreshed?  Okay.

Did you know there are different types of water? Many thanks to Consumer Reports for the following chart.

Artesian

Water obtained from a well that taps a confined aquifer, an underground layer of rock or sand that contains water. Example: Fiji Natural Artesian Water.

Distilled

Water that has been boiled and then recondensed from the steam that the boiling produces. Distillation kills microbes and removes minerals, giving water a flat taste. Example: Glacéau Smartwater.

Mineral

Groundwater that naturally contains at least 250 parts per million of dissolved solids. All minerals and other trace elements must be present in the water when it emerges at the source. Example: Calistoga.

P.W.S.

Public water source, also known as municipal water supply, or tap water. Fun fact: Aquafina, one of the top 10 selling domestic brands, used to say “P.W.S.” on its label—but changed that in 2007 under pressure from Corporate Accountability International to make clear that the water came from a public supply and not some pristine mountain spring called P.W.S.

Purified

Water from any source that has been treated to remove chemicals and pathogens according to standards set by the U.S. Pharmacopoeia. Must contain no more than 10 parts per million of dissolved solids. Distillation, deionization, and reverse osmosis are all purification methods. Examples: Aquafina, Dasani. (Note from me: recently, Dasani has started added minerals to their water.)

Sparklingbottled water

Water that contains carbon dioxide at an amount equal to what it contained when it emerged from its source. Carbon dioxide lost during the treatment process may be added back. (Carbonated waters such as soda water and seltzer are considered soft drinks, not bottled waters.) Example: Perrier.

Spring

Water derived from an underground formation from which water flows naturally to the Earth’s surface. Spring water must be collected at the spring or through a borehole tapping the underground formation (aquifer) feeding the spring. Examples: Arrowhead Mountain Spring Water (Nestlé), Evian. (Hmmm, Nestle also has minerals added now.)

I stick to either spring water or osmosis filtered water.  Be wary of any water with minerals added. You don’t really need more of those.

Digital Cover Part 1

 

Book Cover

It’s contest time.  Post a picture of you reading any of my three books in the most unusual place you can think of and win a copy of Part 2The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1.  You can post your pictures at https://www.facebook.com/WhatHowearlyCKD which is SlowItDownCKD’s Facebook page.  Make sure the title and your face are clearly visible. Keep it clean and keep them coming!  The contest ends on May 31.  Thank you to inspired reader, Geo De Angelo, for sparking the idea in my mind. I’m eager to see how creative you can get.

Until next week,

Keep living your life!

Let Them Eat Cake!

The_Book_of_Blogs-_M_Cover_for_KindleWe have still not finished celebrating my birthday.  Say, now that you’ve downloaded your free copy of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 as my gift to you on my birthday, why not share it for free for 14 days on the Kindle Book Lending program?

Another low cost way of getting the book is asking someone who bought the print copy from Amazon to buy the digital one for you via the Kindle MatchBook program for $2.99.  Of course, you can always ask your library to order a copy.  There are lots of low cost and free ways to get the book.

We were up in Flagstaff for two days as part of my birthday celebration.  Bear remembered that I had repeatedly expressed a desire to see Meteor Crater. Yep, I wanted to visit a hole in the ground for my birthday.

While we were there, we also visited Sunset Crater and learned the difference between eruption and meteor craters.  Going whole hog, we drove IMG_1030along to Wakupti and Wukoki to see the ruins of the pueblos there. This is an amazing state we live in.

We had to stay somewhere, so we stayed somewhere special.  The England House Bed & Breakfast was built about 1902, which made me feel right at home since I raised my daughters in an 1899 Victorian house on New York’s Staten Island.  Now, here’s where the renal part of our overnight get-away comes into play and why there’s a blog about it.  I know, I know… you thought I just wanted to share my birthday fun with you.

Well, that too, but the owner of the B & B – Laurel Dunn – asked if we had any eating restrictions.  Good question for renal patients; bad question for those cooking for them.  I told her. In detail. With examples.  And she came through.

While my husband enjoyed fruit soup, I had fresh cut melon, strawberries, and blueberries.  I had never heard of fruit soup before, so Laurel explained that it was fruit liquefied with yoghurt. Uh-oh, the dreaded yoghurt. That’s not recommended on my renal diet due to the phosphorous in it.

As a Chronic Kidney Disease Patient, my kidneys do not filter my blood as well as they were meant to.  Too much phosphorous can cause problems. I went to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease {page 81} to remind myself what phosphorous does for us and why too much of it is not a good thing when you’re a CKD patient.

Book CoverI have to admit I didn’t know anything about phosphorous. This is the second most plentiful mineral in the body and works closely with the first, calcium. Together, they produce strong bones and teeth. 85% of the phosphorous and calcium in our bodies is stored in the bones and teeth.  The rest circulates in the blood except for about 5% that is in cells and tissues. Again, phosphorous is important for the kidneys since it filters out waste via them. Phosphorous balances and metabolizes other vitamins and minerals including vitamin D which is so important to CKD patients. As usual, it performs other functions, such as getting oxygen to tissues and changing protein, fat and carbohydrate into energy.

Be aware that kidney disease can cause excessive phosphorus. And what does that mean for Early Stage CKD patients? Not much if the phosphorous levels are kept low. Later, at Stages 4 and 5, bone problems including pain and breakage may be endured since excess phosphorous means the body tries to maintain balance by using the calcium that should be going to the bones. There are other consequences, but this is the one most easily understood.

But, of course, there was more to breakfast.  Bear enjoyed a lovely soufflé and muffins.  Bing, bing, bing. A soufflé has a custard base, in other words, a creamy base.  I think I’ve mentioned before that I’m also lactose intolerant.  I’ll say this, it certainly looked tasty.  So what did I have instead?  A simple vegan cheese omelet with four spears of asparagus cunningly arranged over it.

The night before, Laurel had opened her refrigerator to me so I could read the labels on different products.  One was the vegan cheese. It looked all right as far as my sodium, phosphorous, potassium, and protein restrictions, but I had never tasted it before. Let’s just say it’s probably an acquired taste.  My fault, not Laurel’s.

And the excruciatingly aromatic muffins that Richard, Laurel’s partner, baked?  Why did I pass them up? You guessed it.  It was the phosphorous again.  But I did not go away hungry.  Laurel and Richard provided cranberry/blueberry bread from The Wild Flower Baking Company. Apparently this is a specialty item since I could not find it on their website to pull up the ingredients.

Let’s put it this way: this bread was so good that I had it instead of the ugly blue cake I got for the family because I felt bad for it.  I let them {the IMG_1039family} eat cake, while I feasted on the bread.  At least that was the plan.  Once they tasted my bread, they clamored for it.  Ever see five grown children and a husband politely clamor?

But wait, there’s more.  Each juice Laurel had contained added sugar of some kind… except Ceres mango. It was not nectar, but juice sweetened with another juice – pear juice.  And it was delicious.  That became what I was going to have instead of ice cream at my birthday dinner.  Well, until everyone else tasted it.  You know the story.

You don’t think I let a breakfast go by without 1/2 of of my 16 ounces of coffee a day, do you?  It was superb, absolutely superb.

Add chicken cacciatore with brown rice that I made and was totally renal friendly and that, my friends, is how to enjoy your birthday get-away and your birthday dinner without breaking the renal diet.

IMG_1028As for exercise, ummm, well, it was too cold! No, really.  See, I’m even wearing a coat. I console myself with the fact that I got right on the exercise band wagon the very next day.  That’s okay, right?  It is, isn’t it?

Until next week,

Keep living your life.

It’s Different

Sometime ago, I mentioned that Dr. Andrew Weill was my health guru.  I felt that way after my now deceased best buddy introduced me to the wonders of healthy eating. I miss her… and him.Dr. Andrew WEil

Why him?  As you know a healthy diet is not a renal healthy diet.  I still subscribe to his Nutrition Newsletter.  Today, vegetables and fruits were discussed including some excellent advice, but not for us as Chronic Kidney Disease patients.

Colorizing Your Diet

Phytonutrients – the chemical compounds in plants that appear to protect health, but are not established as essential nutrients – are generally concentrated in the skins of many vegetables and fruits, and are responsible for their vibrant hues, scents and flavors. Some phytonutrients are powerful anti-inflammatory agents; others modulate and enhance immune function, maintaining the body’s healing system while keeping abnormal inflammation in check; and still others boost antioxidant defenses to protect DNA and other cellular components from toxic insults that can cause direct harm, or can promote abnormal inflammation leading to tissue damage.

veggiesIn order to get the full range of protective phytonutrients, you should “colorize” your diet: include fresh produce from all parts of the color spectrum and aim for one serving per day (one-half cup cooked or one cup raw) of a fruit or vegetable from all the various color groups (red, red-purple, orange, orange-yellow, yellow-green, green and white-green).

Okay, we’re pretty sure CKD is an inflammatory disease so this would make sense.  We already have compromised systems, so we can use that immune function enhancement.  And we certainly won’t say no to something that can protect our cells and DNA from toxic insults.  So what’s the problem?

Let me answer it this way.  In Chapter 8: The Renal Diet of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease on page 73

In order to fully understand the renal diet, you need to know a little something about electrolytes. There are the sodium, potassium, and phosphate you’ve been told about and also calcium, magnesium, chloride and bicarbonate. They maintain balance in your body.  This is not the kind of balance that helps you stand upright, but the kind that keeps your body healthy.  Too much or too little of a certain electrolyte presents different problems.  Eating a larger portion than suggested in the renal diet of a low sodium, phosphate, protein or potassium food is the equivalent of eating a high sodium, phosphate, protein or potassium food.

So it’s not just eating the fruits and vegetables from each color group.  We need to analyze the electrolytes in each serving, especially the phosphate and potassium.  I also can only eat three servings of fruits and three of vegetables rather than the seven Dr. Weil recommends.Book Cover

Why the restrictions of the electrolytes?

Let’s take a look at potassium. Potassium is not a bad thing if you don’t have CKD.  It dumps wastes from your cells and helps the kidneys, heart and muscles to function normally.  However, too much can cause irregular heartbeat and even heart attacks. Your kidneys are not doing an effective job of filtering the potassium in your blood.  You have CKD.  This should explain the connection between CKD and cardiovascular events.

And phosphorous? I’ll quote from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease again here since I like the simple direct way I explained it on page 76.

This is the second most plentiful mineral in the body and works closely with the first, calcium. Together, they produce strong bones and teeth. 85% of the phosphorous and calcium in our bodies is stored in the bones and teeth.  The rest circulates in the blood except for about 5% that is in cells and tissues. Again, phosphorous is important for the kidneys since it filters out waste via them. Phosphorous balances and metabolizes other vitamins and minerals including vitamin D which is so important to CKD patients. As usual, it performs other functions, such as getting oxygen to tissues and changing protein, fat and carbohydrate into energy.

Be aware that kidney disease can cause excessive phosphorus. And what does that mean for Early Stage CKD patients? Not much if the phosphorous levels are kept low. Later, at Stages 4 and 5, bone problems including pain and breakage may be endured since excess phosphorous means the body tries to maintain balance by using the calcium that should be going to the bones. There are other consequences, but this is the one most easily understood.

water melonTo complicate matters even more, CKD patients are limited to different servings sizes of different fruits and vegetables, not the straight across the board ½ cup cooked or 1 cup raw of each Dr. Weil suggests.  For example: I can eat ½ cup of broccoli, but only 1/3 cup of raisins.  It depends upon the electrolytes in the particular fruit and vegetable and how much of that specific electrolyte you’ve eaten that day.

*sigh* I miss the days of having Dr. Weil as my health guru.

I found even more reviews and all five stars!  I am so enjoying this. Thank you all for the reviews.firworks

I was just diagnosed with Chronic Kidney disease Stage 4 a few weeks ago and I want to THANK YOU very much for this book. I put it on my Kindle. It is written in a way that one newly diagnosed and not in the medical field can understand.

Gail Rae has provided a good insight to the bombshell that befalls millions of unsuspecting humans worldwide. A CKD victim myself with years of experience under my belt, found the book extremely informative and a great reference when providing peer support to newly diagnosed sufferers of this silent killer.

So much good information for Chronic Kidney Disease Patients, from beginning to end. Thank you Gail Rae.

Ms. Rae knows, in my opinion, what she is talking about. She is direct-to the point-and the book is easily understood. She has just a hint of humor in her writing which keeps the reader engaged. Will keep this in my reference library.

Until next week,

Keep living your life!

Smokin’!

When I was in college a million years ago, this was a compliment.  I’d wear the new dress my mother bought me, go to a dance or a party, dance my brains out, and find some guys whispering this under their breath as I passed them.early headshots

Not anymore.  True, Mom’s long gone, I’m married, and if anyone whispered this to me now, I’d think they were asking me if I smoked…and that’s a big no-no these days, especially with Chronic Kidney Disease.

We’ve taken for granted for years now that people just don’t smoke anymore. That’s not true, you know.  Other countries still find smoking acceptable, although not all.  There are also people who are so addicted that they just can’t stop.  Today we’ll take a look at what might help.

But first, we need to go back to the basics – as usual. On my very first visit to a nephrologist, I was told to stop smoking, even social smoking.

But why?  DaVita at http://www.davita.com/kidney-disease/overview/living-with-ckd/smoking-and-chronic-kidney-disease/e/4897 offered a succinct answer to my question:

Blood Oxygen Cycle Picture 400dpi jpgHow smoking can harm kidneys

Here are some of the possible ways smoking is thought to harm kidneys:

  • Increases blood pressure and heart rate
  • Reduces blood flow in the kidneys
  • Increases production of angiotensin II (a hormone produced in kidney)
  • Narrows the blood vessels in the kidneys
  • Damages arterioles (branches of arteries)
  • Forms arteriosclerosis (thickening and hardening) of the renal arteries
  • Accelerates loss of kidney function

In addition to tobacco, smoking allows other toxins into the body. And according to the American Association of Kidney Patients (AAKP), studies have shown that smoking is harmful for the kidneys, and can cause kidney disease to progress and increases the risk for proteinuria (excessive amount of protein in the urine).

To make this a little more comprehensive, here are some definitions from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:The Table

Arteries: Vessels that carry blood from the heart.

Hormones: …chemicals that trigger tissues to do whatever their particular job is.

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

Renal: Of or about the kidneys

Sounds drastic, doesn’t it?  So, what can be done to help those people who are so addicted they can’t stop smoking on their own?

An Israeli PhD student at Weizmann Institute of Science in Rehovot, Anat Arzi, has a novel idea.  She believes that exposing smokers to the smell of smoke and other unpleasant odors while they sleep can make them less eager to smoke.  In her own words, “”This research stems from recent findings suggesting that novel associations can be learned during human sleep and retrieved upon awakening.”sleepWhile this was only a small study with 76 people, I can’t remember reading about any other cease smoking study that deals with aversive conditioning during REM sleep.  Aversive conditioning is {surprise!} just what it sounds like: using unpleasant stimuli – like the rotten fish Arzi used – to cause some kind of change in behavior.  Quick reminder, REM means Rapid Eye Movement and occurs during the second stage of falling asleep.

You can read about the study yourself at http://www.m.webmd.com/a-to-z-guides/news/20141120/sleep-addiction-cigarettes?page=2

Then, there’s the FDA approved, safe, natural product Smoke Remedy offered on the internet.  You need to remember that FDA approved, safe, and natural does not necessarily mean safe for CKD. I applaud the fact that they list their ingredients, but this is not safe for us.

The homeopathic medicines in Smoke Remedy™ come from several different plant and mineral sources that include:

  • Avena sativa – to help with the addiction to nicotine and tobacco;
  • Caladium seguinum, Daphne Indica, Eugenia jambosa, Ignatia, Calcarea phosphorica, and Plantago major – these help to stop the craving and desire to smoke;
  • Kali phosphoricum, Nux vomica, and Staphysagria – to help prevent the withdrawal symptoms you may experience when quitting;
  • The product also contains purified water, citric acid and potassium sorbate.

For example, that last ingredient, potassium sorbate caught my eye because we know that we, as people with CKD, need to limit our potassium.  It turns out to be a preservative and nothing I’d want in my body whether the FDA approves it or not. The Calcarea Phosphorica made me pause, too.  As CKD patients, we do not need more phosphorous, as you already know.

I’m not saying don’t use homeopathic remedies, but I am saying you need to research each and every ingredient AND bring the list of side effects to your nephrologist before you do. Your doctor may not be familiar with homeopathic medicines, which is why you are doing the research to bring to him or her.Nicotine gum and crossed tobacco.

Of course, there’s always the patch or special gums, but they have their own problems.  Most feed slow doses of nicotine into your body. That’s the element of tobacco that injures your kidneys. This is to address the withdrawal symptoms.

I went to http://www.stopsmoking.net/free-nicotine-patch.html to see if there are side effects. Don’t you just love products with full disclosure? Here’s what I found:

“It’s worth noting that many of the top nicotine patches often produce undesirable side effects. Common side effects include headaches, dizziness, upset stomach, nausea, chest pain, breathing problems, anxiety, and irregular heartbeat. Furthermore, some people have nicotine patch allergies. The skin becomes red, and their body becomes severely irritated by the patch. If this ever happens, you need to contact a doctor right away. Nicotine patch allergies can produce damaging results.”

Now here’s an eye opener I found at http://thechart.blogs.cnn.com/2012/01/09/study-nicotine-gums-patches-only-help-with-withdrawal/:

“The perception of the public using the product is that these are good forever – that these will result in you not smoking in three, five, 10 years,” says Greg Connolly, Director of the Center for Global Tobacco Control at the Harvard School of Public Health. “Well, they were never designed to do that. They were designed to treat withdrawal, which is a symptom that occurs from stopping to probably six months, and then it usually ends.”

I never realized how really hard it is for addicted smokers to stop.  Now I fully appreciate my father who decided there wasn’t enough money 923117_10151599924904491_1034557671_ncoming in for him to waste it on cigarettes when he had three children.  He simply stopped. Or so I thought.  (This was way before 1996 when the patch and gum first made their appearance.) Thank you, Dad; this must have been really hard.

Until next week,

Keep living your life!

Up and Down…and Up…and Down

I usually base the blog upon what’s happening in my medical life or those of my family members and friends.  I thought I wouldn’t have anything to write about today. But then I got my latest lab results.  Ugh!

eGFR MDRD Non Af Amer >59 mL/min/1.73 47

There’s been some variation in my eGFR for the last few months and it hasn’t all been good.  What’s the eGFR, you ask.  Let’s start with the GFR and use the glossary in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease {page 132} for the definition:

Glomerulus-Nephron 300 dpi jpg“Glomerular filtration rate [if there is a lower case “e” before the term, it means estimated glomerular filtration rate] which determines both the stage of kidney disease and how well the kidneys are functioning.”

Wonderful, except we need to know what glomerulus means since the suffix ‘ar’ tells us that glomerular is an adjective or word that describes a noun – a person, place, thing, or idea.  In this case, the noun is glomerulus.   Thank you dictionary.reference.com for the following:

“Also called Malpighian tuft, a tuft of convoluted capillaries in the nephron of a kidney, functioning to remove certain substances from the blood before it flows into the convoluted tubule.”glomerulus

Yes, yes, I know more definitions are needed.  Back to the glossary in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease {page 134 this time):

“Nephrons: The part of the kidney that actually purifies and filters the blood.”

A tubule, as you’ve probably guessed, is a very small tube.  This is when having been an English teacher for decades pays off in my kidney work!

Maybe we should define capillary too, in case you’ve forgotten what it is. This time I used Merriam-Webster.com at MedlinePlus.

“a minute thin-walled vessel of the body; especially: any of the smallest blood vessels connecting arteriole with venules and forming networks throughout the body.”

In other words, they’re the smallest blood vessels in the body.

Alright, we’ve got our vocabulary in place; now why is the eGFR so important? As stated in the definition above, it is used for staging your Chronic Kidney Disease.  Different stages require different treatment or no treatment at all.  There are five stages with the mid-level stage divided into two parts.  The higher the stage, the worse your kidney function.stages chart

Think of the stages as a test with 100 being the highest score.  These are the stages and their treatments:

STAGE 1: (normal or high) – above 90 – usually requires watching, not treatment, although many people decide to make life style changes now: following a renal diet, exercising, lowering blood pressure, ceasing to smoke, etc.

STAGE 2: (mild) – 60-89 – Same as for stage one

STAGE 3A: (moderate) – 45-59 – This is when you are usually referred to a nephrologist {kidney specialist}. You’ll need a renal {kidney} dietitian, too, since you need to be rigorous in avoiding more than certain amounts of protein, potassium, phosphorous, and sodium in your diet to slow down the deterioration of your kidneys. Each patient has different needs so there is no one diet.  The diet is based on your lab results.  Medications such as those for high blood pressure may be prescribed to help preserve your kidney function.

STAGE 3B: (moderate) – 30-44 – same as above, except the patient may experience symptoms.

STAGE 4:  (severe 15-29) – Here’s when dialysis may start. A kidney transplant may be necessary instead of dialysis {artificial cleansing of your blood}. Your nephrologist will probably want to see you every three months and request labs before each visit.

STAGE 5: (End stage) – below 15 – Dialysis or transplant is necessary to continue living.

Many thanks to DaVita.com for refreshing my memory about each stage.

Back to my original concern about the GFR results in my labs.  Why did it fluctuate from 53 in August of last year, to 47 in February of this year, to 52 in May, to 56 in August, and to 47 last week? All the values are within stage 3A and I know it’s only a total fluctuation of six points, but it’s my GFRfluctuation so I want to know.  And that’s what started this whole blog about GFR.

I discovered that different labs may use slightly different calculations to estimate your GFR, but I always go to the same lab, the one in my doctor’s office.  Nope, that’s not my answer.

According to the American Kidney Fund, “…this test may not be accurate if you are younger than 18, pregnant, very overweight or very muscular.”  No, these situations don’t apply to me either.

Maybe I’m going about this all wrong and should look at the formula for arriving at GFR. The National Kidney Disease Education program lists the formula which includes your serum creatinine.  Aha! Maybe that’s the cause of the variation.  First a reminder: creatinine is the chemical waste product of muscle use. {This is a highly simplified definition.}

You’ll find this on your Comprehensive Metabolic Panel Blood Results, should you have your results. The normal values are between 0.57 and 1.00 mg/dL.  Mine were above normal for each test, a sign that I have CKD.  As if I didn’t already know that. These results were also lower each time my GFR was higher.

iPadI researched and research.  My final understanding is that not only can CKD elevate your creatinine, but so can dehydration, diabetes or high blood pressure.  If your creatinine is elevated, the results of the GFR formula will be lowered.  That’s enough information to allow me to rest easy until I see my doctor next week.

Some of this was pretty technical and I couldn’t give you many exact web addresses since my computer is having its own issues today.  You may want to try an online GFR calculator just to see how it works.  You will need your serum creatinine value {serum means blood, so this is not to be confused with the urine creatinine test} to do so.  I like the one at DaVita.com.

Until next week,Book Cover

Keep living your life!

Pro on Probiotics?

probioticsMy husband takes probiotics and they work for him. This is why he takes them, as explained by http://www.theralac.com/why-take-probiotics.aspx:

“For healthy people, probiotics can help boost the immune system and increase the absorption of important minerals and nutrients. For people with digestive problems, probiotics can be taken in higher doses to help regain digestive balance.”

I thought they might be worth a try, but my nephrologist disagreed.  We had our discussion about this right after I’d been a guest on a radio show during which the pros and cons of using probiotics for chronic kidney disease were discussed. This was just about the same time the information I’d requested from Kibow arrived.  This is from their website at www.Kibow.com:

“Certain probiotic microorganisms can utilize urea, uric acid and creatinine and other toxins as its nutrients for growth. Overloaded and impaired kidneys have a buildup of these poisonous wastes in the bloodstream. Probiotic microorganisms multiply, thereby creating a greater diffusion of these uremic toxins from the circulating blood across the lining of the intestinal walls into the bowel. This increased microbial growth is excreted along with the feces (which is normally 50% microbes by weight).

Enteric toxin reduction technology uses probiotic organisms to transform the colon into a blood cleansing agent, which, with the aid of microbes, indirectly removes toxic wastes and helps eliminate them as fecal matter. Consequently, a natural treatment for kidney failure is possible to maintain a healthy kidney function with the oral use of Renadyl™. The patented, proprietary probiotics in Renadyl™ have been clinically tested and shown to be safe, free of serious side effects, and effective in helping the body rid itself of harmful toxins when taken for as long as 6 months.”

Let’s slow down a bit.  We’ll need some definitions, so I turned to my favorite user friendly online medical dictionary, www.merriam-webster.com for the following:

CREATININE: (I know you know this one; this is just a reminder) a white crystalline strongly basic compound C4H7N3O formed from creatine and found especially in muscle, blood, and urine

ENTERIC: of, relating to or affecting the intestines; broadly:  alimentary

PROBIOTIC: a preparation (as a dietary supplement) containing a live bacterium (as lactobacilli) that is taken orally to restore beneficial bacteria to the body; also:  a bacterium of such a preparation

UREA: a substance that contains nitrogen, is found in the urine of mammals and some fish, and is used in some kinds of fertilizerdictionary

URIC ACID: a white odorless and tasteless nearly insoluble acid C5H4N4O3 that is the chief nitrogenous waste present in the urine especially of lower vertebrates (as birds and reptiles), is present in small quantity in human urine, and occurs pathologically in renal calculi {a little help here, this means a concretion usually of mineral salts around organic material found especially in hollow organs or ducts} and the tophi of gout

What I found on Kibow is a mouthful… and an advertisement.  I am not endorsing Renadyl.  However, there is an animation at http://www.renadyl.com/How-Renadyl-works which visually clarifies the information above. While I understood the process better after watching the animation, I’m still leery of that six month warning, especially after I found this at the bottom of one of their pages:

“* These statements have not been approved by the Food and Drug Administration. This product is not intended to diagnose, treat, cure or prevent disease. Results may vary.”

In addition, this product contains psyllium seed husk, something I was cautioned to avoid. It seems my nephrologist is not the only one who feels this way. http://www.metamuciladvisor.com/avoid-psyllium-and-metamucil-in-kidney-disease/ is the webpage of Metamucil, a product whose main ingredient is psyllium.  However, this conscientious company also posts this information on their website:

Psyllium Products and Their Minerals

There are certain psyllium products that contain a large amount of minerals that individuals with kidney disease cannot process. Some psyllium products contain high volumes of psyllium seed huskspotassium, sodium and magnesium, which if a person with kidney disease consumes can cause a lot of problems. If an individual’s physician gives permission on taking psyllium then they need to make sure the psyllium product follows their restricted diet.

Fluids Required With Psyllium

When consuming psyllium six to eight glasses of water must be consumed to keep from having any uncomfortable side effects. This can be a problem for an individual with kidney disease since the kidneys cannot effectively filter the fluid. Since the proper amount of fluid cannot be consumed this can cause side effects and make the natural fiber less effective.

Things to Consider

One of the number one complaints in individuals with kidney disease is constipation due to the fact fluid restrictions, vegetables and more. Since there are many restrictions an individual has with kidney disease with their diet there are other safe options to choose from. Discuss these other safe options with your physician to relieve constipation.

Maybe it’s just me, but I don’t understand why someone with kidney disease would want to take a product that will harm them.  As a matter of fact, I don’t understand why Kibow, the makers of Renadyl, don’t post such a warning on their site. Hmmm, I wonder if the  “…safe, free of serious side effects, and effective in helping the body rid itself of harmful toxins when taken for as long as 6 months” statement included in their material IS their warning.  And just how many people catch that one sentence anyway?

At http://clinicaltrials.gov/show/NCT00760162, I did find the record of a study filed by Kibow in 2009, but not the results of the six month trial.  The record was processed on November 9, 2014 which is very recent.  Either I don’t know how to find the outcomes of the trial or they are simply not there. I suspect the latter.

I have no intention of vilifying Kibow, but do find this to be another case of be careful what you choose to take, very careful.  Watch the small print, talk to your nephrologist before making any decisions, and make sure you guard whatever you have left of your kidney function.

Book CoverThank you for your continued interest in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. Keep in mind what a terrific holiday gift this is… and that next year, you’ll be able to gift the same person with What Is It and How Did I Get It? Early Stage Chronic Kidney Disease’s little sister: The Book of Blogs.

Until next week,

Keep living your life.

Sunshine and Superwoman

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Number Three on The List

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Keep living your life!