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!

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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  
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Joy to the World

As Three Dog Night sang in Hoyt Axton’s song:

“Joy to the world
All the boys and girls now
Joy to the fishes in the deep blue sea
Joy to you and me”

Turn up your speakers and give a listen. See if you don’t feel more joy just from listening. Thanks to Three Dog Night for placing that grin back on my face when it’s gotten lost… and to YouTube, too.

I’ve written about what stress, grief, and shock do to your body, but with recent events I have reason to wonder what happiness does to your body. The birth of our first grandchild has revealed levels of joy I never knew existed. Add to that our youngest’s engagement and you’ll find me floating at least three feet above the ground most of the time.

I did my usual poking around and found some answers.

Calgary Psychology at http://www.calgarypsychology.com/happiness/correlation-health-happiness has some information for us, although it’s not as recent as I’d like it to be since it was published in 2010:

“A study in the journal Proceedings of the National Academy of Sciences examined the link between happiness and a number of health factors in 200 Caucasian adults, age 45-59 years, all of whom worked for the government in London, England. The study assessed each participant on a work day and weekend day, measuring them at work and play for a number of criteria including blood pressure, heart rate and stress hormone (cortisol) levels. Participants were measured under normal conditions and after a mental stress test. Under each condition participants ranked their happiness on a scale of 1 (lowest) to 5 (highest). There were no differences in happiness between people who were married or single, male or female or of varying socioeconomic status; however the happiest participants had the best results across the board for the health markers. I.e. happier people had lower heart rates, and an average of 32% lower levels of cortisol which can have a direct effect on other elements such as blood sugar.”

Cortisol? Anyone remember what that is? Let’s have a reminder, please. I found this in SlowItDownCKD 2016. It’s from Reference.com at https://www.reference.com/science/function-adrenal-gland-72cba864e66d8278.

“Cortisol is a hormone that controls metabolism and helps the body react to stress, according to Endocrineweb. It affects the immune system and lowers inflammatory responses in the body. …”

Want a little reminder about metabolism? I do. According to Dr. Ananya Mandal from News Medical Life Sciences at https://www.news-medical.net/life-sciences/What-is-Metabolism.aspx:

“Metabolism is a term that is used to describe all chemical reactions involved in maintaining the living state of the cells and the organism. Metabolism can be conveniently divided into two categories:

  • Catabolism – the breakdown of molecules to obtain energy
  • Anabolism – the synthesis of all compounds needed by the cells”

Aha! So joy or being happy helps the body produce the hormone that obtains energy and synthesizes what we need to live. Now I get it why I actually feel better physically when I’m happy. I was in the throes of bronchitis when my grandson was born and started getting better right away. Magic? Nope, just plain joy at work in my body.

Notice joy may have an affect via cortisol on your blood sugar, too. Blood sugar ? Why is that important? The following is from a study published in The American Journal of Kidney Disease that was included in SlowItDownCKD 2011

“Good control of blood sugar, blood pressure, cholesterol levels and body weight can delay the loss of kidney

function.”

And lower heart rates? How does that help us? I’ve don’t think I’ve written about that so I hopped right over to my longtime favorite the Mayo Clinic at https://www.mayoclinic.org/healthy-lifestyle/fitness/expert-answers/heart-rate/faq-20057979.

“A normal resting heart rate for adults ranges from 60 to 100 beats a minute. Generally, a lower heart rate at rest implies more efficient heart function and better cardiovascular fitness.”

Good news. Being happy – joyous in my case – is good for the heart, which automatically means it’s good for the kidneys since your heart health has a lot to do with your kidney health and vice-versa.

Let’s not forget that the lower levels of cortisol joy causes “lowers inflammatory responses in the body.” Chronic Kidney Disease is an inflammatory disease. I love it! Just by being happy, I’m helping myself with my CKD.

As the late night television commercials cautioned us once up on a time: But wait, there’s more. I turned to the Greater Good Science Center based at UC Berkeley. According to the website, they, “provide a bridge between the research community and the general public.”

That’s where I found this quote from a 2015 article at: https://greatergood.berkeley.edu/article/item/six_ways_happiness_is_good_for_your_health.

“Love and happiness may not actually originate in the heart, but they are good for it. For example, a 2005 paper found that happiness predicts lower heart rate and blood pressure. In the study, participants rated their happiness over 30 times in one day and then again three years later. The initially happiest participants had a lower heart rate on follow-up (about six beats slower per minute), and the happiest participants during the follow-up had better blood pressure.”

Oh, blood pressure. This is also called hypertension and is defined in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease this way:

“A possible cause of CKD, 140/90mm Hg is currently considered hypertension, a risk factor for heart disease and stroke, too.”

That book was written in 2010. The guidelines changed in November of last year. Take a look at the infogram from the American Heart Association. I’ve also learned that hypertension is the second leading cause of CKD.

What’s the first? You guessed it: diabetes or blood sugar that is not controlled. I am overjoyed at the results of my poking around about joy. By being fully present to the joy in my life, by simply feeling that joy, while I personally can no longer prevent my CKD, I can further slow down the progression of the decline in my kidney function. Being happy is also helping to prevent diabetes from entering my life and working on keeping my blood pressure closer to where it belongs.

This joy just goes on and on for me. This year alone, it’s been celebration after celebration: birthdays, anniversaries, the birth, the engagement, triumphs for those I love. My list grows and grows. Why not consider a little joy for your body’s sake, if not for your mental state?

Until next week,

Keep living your life!

Any Veterans Here?

Veterans Day was Saturday, although many schools and businesses chose to celebrate it on Friday. That confused me since I mistakenly thought all national holidays falling on the weekend in the U.S. were celebrated on the following Monday. Once that was straightened out for me, I wondered if we were the only country to honor those who fought for us.

According to The United States Department of Veterans Affairs at https://www.va.gov/opa/vetsday/vetday_faq.asp, we’re not:

Q. Is Veterans Day celebrated in other countries?

A. Yes, a number of countries honor their veterans each year on November 11, although the name and types of commemorations differ somewhat from Veterans Day celebrations in the United States. For example, Canada and Australia observe “Remembrance Day” on November 11, and Great Britain observes “Remembrance Day” on the Sunday nearest to November 11. There are similarities and differences between these countries’ Remembrance Day and America’s Veterans Day. Canada’s observance is actually quite similar to the U.S. celebration, in that the day is intended to honor all who served in Canada’s Armed Forces. However, unlike in the U.S., many Canadians wear red poppy flowers on November 11 in honor of their war dead. In Australia, Remembrance Day is very much like America’s Memorial Day, a day to honor that nation’s war dead.

In Great Britain, the day is commemorated by church services and parades of ex-service members in Whitehall, a wide ceremonial avenue leading from London’s Parliament Square to Trafalgar Square. Wreaths of poppies are left at the Cenotaph, a war memorial in Whitehall, which was built after the First World War. At the Cenotaph and elsewhere in the country, a two-minute silence is observed at 11 a.m., to honor those who lost their lives in wars.

There are 600,000 veterans with kidney disease in the U.S. Considering that kidney disease is a medically dischargeable disease (Can you imagine soldiers in the field trying to stick to the renal diet?), I began to wonder just how our veterans were being treated once they were no longer active military.

I went to the National Institute of Diabetes and Digestive and Kidney Diseases at http://bit.ly/2ABGeli for the following information:

The prevalence of chronic kidney disease (CKD) in the Veteran population is estimated to be 34% higher than in the general population, due to demographic differences and the existence of significant co-morbidities associated with CKD in the Veteran population—diabetes mellitus and hypertension. VA currently cares for over 600,000 Veterans with kidney disease in their 153 medical treatment facilities or 800 community based outreach clinics (CBOC’s) across the United States. Those Veterans who progress to kidney failure are treated either at home or in one of the 70 VA dialysis units, or if dialysis services are not directly available, may be treated in the community under VA contracted care. Currently over 15,000 Veterans receive care directly by VA or through the community under VA contracted care. Eligible Veterans may also elect to receive dialysis care in the community using Medicare or other personal health benefits programs. Renal transplantation is also offered through the VA as a regionalized service at 5 centers.

Wait a minute. Why did “demographic differences and the existence of significant co-morbidities associated with CKD in the Veteran population—diabetes mellitus and hypertension” lead to a whopping 34% of veterans having kidney disease?

I know when Bear spoke with me about his 25 year military career, he talked of people with different ethnic backgrounds from different parts of the country… some from different parts of the world.

I remembered writing this in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“…Native American, Alaskan Native, Hispanic, Pacific Islander or Afro-American ethnic groups…have a 15 to 17% higher occurrence of CKD.”

And I was off and running. Last Veterans Day’s Huffington Post was able to help out here.

“According to the U.S. Department of Defense, as of 2012 there were over 22,000 American Indians and Alaska Natives on active duty, and the 2010 Census identified over 150,000 American Indian and Alaska Native veterans.”

You can read the entire article at https://www.huffingtonpost.com/national-museum-of-the-american-indian/american-indians-serve-in-the-us-military_b_7417854.html.

And Hispanics? Journalist Erika L. Sanchez wrote in 2013 that over 157, 000 Hispanics served in the military then. By the way, her article at http://nbclatino.com/2013/01/01/u-s-military-a-growing-latino-army/ gives the rest of us a little insight into the Latino community’s military leanings.

I hesitate to come up with the number of Pacific Islanders serving in the military since the information is even older than that for Native Americans and Alaskan Natives (Did you notice they were grouped together?) or Hispanics. It’s also included with that of Asians, so the categories are Asian-Pacific Islanders rather than Pacific Islanders.

As for Afro-Americans or Blacks – readers, which name do you prefer? – the closest I can figure out is that 370,842 Blacks or 16% of the Blacks in the United States served in the U.S. military… in 2011.

None of these statistics is current. It takes time for the military to collect and compose their data, but I had been hoping for numbers that were a little more timely.

And now the biggie: just how much is The Veterans Administration spending on veterans with kidney disease?

Finally, a fairly current article. In April of this year, MedPage Today at https://www.medpagetoday.com/meetingcoverage/nkf/64668 offered this information from Kristen Monaco’s article:

Rajiv Saran, MD, of the University of Michigan, and colleagues found the total cost of CKD care in the Department of Veterans Affairs healthcare system increased from $12 billion in 2006 to $19 billion in 2014 in current dollars. Adjusted for inflation, the increase was 26%, the researchers reported as a late-breaking abstract at the National Kidney Foundation’s 2017 Spring Clinical Meeting.

More than three-fourths of the VA’s aggregate spending each year on CKD patients was dedicated to patients with either stage 3a or 3b disease. However, the average cost per patient to treat increased with each worsening stage of CKD, with non-dialysis stage 5 CKD being the most expensive.

To all those who served, whether or not you developed kidney disease, thank you from the bottom of my heart.

 

Until next week,
Keep living your life!

Long Term, Short, and your Heart

I received some comments about Acute Kidney Disease (AKI) in the midst of all the support after last week’s blog. It seems this is a new topic for so many of us. By us I mean Chronic Kidney Disease (CKD) patients. I know at stage 3, my nephrologist never brought this up to me.

Ah, but I remembered this from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

On the very first page of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I wrote “…chronic is not acute. It means long term, whereas acute usually means quick onset and short duration.”

All those years of teaching English in high school and college paid off for me right there in that sentence.

I’d always thought that AKI and CKD were separate issues and I’ll bet you did, too. But Dr. L.S. Chawla and his co-writers based the following conclusion on the labor of epidemiologists and others. (Note: Dr. Chawla et al wrote a review article in the New England Journal of Medicine in 2014.)

“Chronic Kidney Disease is a risk factor for acute kidney injury, acute kidney injury is a risk factor for the development of Chronic Kidney Disease, and both acute kidney injury and Chronic Kidney Disease are risk factors for cardiovascular disease.” …

Not surprisingly, the risk factors for AKI {Once again, that’s acute kidney injury.} are the same as those for CKD… except for one peculiar circumstance. Having CKD itself can raise the risk of AKI 10 times. Whoa! If you’re Black, of an advanced age {Hey!}, or have diabetes, you already know you’re at risk for CKD, or are the one out of nine in our country that has it. Once you’ve developed CKD, you’ve just raised the risk for AKI 10 times. I’m getting a little nervous here….

It makes sense, as researchers and doctors are beginning to see, that these are all connected. I’m not a doctor or a researcher, but I can understand that if you’ve had some kind of insult to your kidney, it would be more apt to develop CKD.

And the CVD risk? Let’s think of it this way. You’ve had AKI. That period of weakness in the kidneys opens them up to CKD. We already know there’s a connection between CKD and CVD. Throw that AKI into the mix, and you have more of a chance to develop CVD whether or not you’ve had a problem in this area before. Let’s not go off the deep end here. If you’ve had AKI, you just need to be monitored to see if CKD develops and avoid nephrotoxic {Kidney poisoning} medications such as NSAIDS… contrast dyes, and radioactive substances. This is just so circular!

As with CKD, your hypertension and diabetes {If you have them.} need to be monitored, too. Then there’s the renal diet, especially low sodium foods. The kicker here is that no one knows if this is helpful in avoiding CKD after an AKI… it’s a ‘just in case’ kind of thing to help ward off any CKD and possible CVD from the CKD.

Has your primary care doctor recommended a daily low dose aspirin with your nephrologist’s approval? This is to protect your heart against CVD since you already have CKD which raises the risk of CVD. Now here’s where it gets confusing, the FDA has recently revoked its endorsement of such a regiment.

Let’s see what more we can find out about this dastardly triumvirate.

The National Kidney Foundation at https://www.kidney.org/atoz/content/AcuteKidneyInjury offers this information about AKI.

Acute kidney injury (AKI) is a sudden episode of kidney failure or kidney damage that happens within a few hours or a few days. AKI causes a build-up of waste products in your blood and makes it hard for your kidneys to keep the right balance of fluid in your body. AKI can also affect other organs such as the brain, heart, and lungs. Acute kidney injury is common in patients who are in the hospital, in intensive care units, and especially in older adults.

You did catch that it can affect the heart, right?

Well, what about the heart and its diseases?

This is from the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/heart-disease/basics/definition/con-20034056.

The term “heart disease” is often used interchangeably with the term “cardiovascular disease.”

Cardiovascular disease generally refers to conditions that involve narrowed or blocked blood vessels that can lead to a heart attack, chest pain (angina) or stroke. Other heart conditions, such as those that affect your heart’s muscle, valves or rhythm, also are considered forms of heart disease.

Many forms of heart disease can be prevented or treated with healthy lifestyle choices.

Maybe a reminder of what CKD is will help, too. WebMD at http://www.webmd.com/a-to-z-guides/tc/chronic-kidney-disease-topic-overview#1 offers this simple, comprehensive explanation.

Having chronic kidney disease means that for some time your kidneys have not been working the way they should. Your kidneys have the important job of filtering your blood. They remove waste products and extra fluid and flush them from your body as urine. When your kidneys don’t work right, wastes build up in your blood and make you sick.

Chronic kidney disease may seem to have come on suddenly. But it has been happening bit by bit for many years as a result of damage to your kidneys.

Each of your kidneys has about a million tiny filters, called nephrons. If nephrons are damaged, they stop working. For a while, healthy nephrons can take on the extra work. But if the damage continues, more and more nephrons shut down. After a certain point, the nephrons that are left cannot filter your blood well enough to keep you healthy.

My head is spinning. One could – or could not – lead to another which, in turn, could – or could not – lead to the third. There’s no strict order and there’s no way of knowing until you actually have it. My layperson’s suggestion? Take good care of your kidneys.

Until next week,
Keep living your life!

Updated

 

 

 

You may have seen the pictures of the updates we’ve been making to our home on Facebook or Instagram. Now, it seemed to me that if I could update my home, I could update SlowItDownCKD’s social media. So I did. The website at www.gail-raegarwood.com is totally SlowItDownCKD now, as are the Instagram, LinkedIn, Twitter, and Pinterest accounts. Of course, the blog was next. I liked my updates, but realized some of the new organizations on the blogroll (the list to the right of the blog) may be unknown to you.

No problem. I’ll just introduce them to you. Allow me to make the introductions…

We’ll go alphabetically down the roll here. The American Association of Kidney Patients, The American Kidney Fund, and The American Society of Nephrology are not new. Just in case you need a reminder of what each is, I’ve linked their titles to the organization. Just click on one of them to go to their websites, as you usually do for any title on the blogroll.

This brings us to The International Federation of Kidney Foundations. This is directly from the young (established 1999) organization’s website:
The International Federation of Kidney Foundations leads the way in the prevention and treatment of kidney disease, through its Membership on all continents around the world. The Federation was formed to foster international collaboration and the exchange of ideas that will improve the health, well-being and quality of life of individuals with kidney disease. We hope to achieve this by advocating for improved health care delivery as well as adopting and disseminating standards of best practice of treatment and care. We facilitate education programs for member organisations, promote research, communicate with other organisations and exchange ideas, particularly those concerning fund raising….
The IFKF helps facilitate the establishment of more kidney foundations and to help existing foundations become more dynamic and effective. Worldwide, most individuals with chronic kidney disease or hypertension are not diagnosed until long after the illness has developed. Moreover, when they are diagnosed they are too often treated sub-optimally or not at all. In many parts of the world, once end stage kidney failure occurs, patients do not have access to dialysis or kidney transplantation.
IFKF members join together with ISN members and kidney patient associations, to celebrate World Kidney Day annually in March, to influence general physicians, primary healthcare providers, health officials and policymakers and to educate high risk patients and individuals.

I’ve been interested in the global effects of Chronic Kidney Disease since I started preparing for Landmark’s 2017 Conference for Global Transformation at which I presented this past May. Writing two articles for their journal opened my eyes- yet again – to the fact that this is not just a local problem, but a worldwide problem. That’s why I included Kidney Diseases Death Rate By Country, On a World Map in the blogroll. I mapped out the statistics I found here on a trifold map to exhibit at the conference. Seeing the numbers spread all over the world was startling, to say the least.

Here is their 2015 global CKD information:
In 2015, the Asian nations of India and China fared the worst when it came to the number of deaths due to this degenerative health condition per thousand people. According to the World Health Organization (WHO) data (I’m interrupting. Would you like a link to WHO on the blogroll?), India had the highest number of kidney diseases deaths. The data put the figure at an astounding 257.9 per 1,000 people. China had the second highest number of deaths due to kidney diseases. Here, the number stood at 187.4 per 1,000 people. Though not as bad as the two Asian nations, the United States was also grappling with the problem of kidney diseases deaths in 2015. The nation had 59.8 deaths (per 1,000 people) due to kidney diseases, while Indonesia, which occupied the fourth place, had an estimated 43 deaths (per 1,000 people) due to kidney diseases. Nations such as Egypt, Germany, Mexico, Philippines, Brazil, Thailand and Japan reported deaths between 20 and 40 (per 1,000 people) due to kidney-related diseases. But, on the positive side, there were many nations in the world where a negligible number of people died due to kidney diseases. It is a noteworthy fact that countries such as Maldives, Vanuatu, Iceland, Grenada, Comoros, Belize, and many others, reported a zero figure in 2015.

But then I wanted to cover more localized information about CKD, so I included The National Chronic Kidney Disease, Fact Sheet, 2017. This is basically facts with pictograms that make the information about the United States’ CKD information more visual and easier to grasp. The information is more distressing each year the site is updated.

Fast Stats

• 30 million people or 15% of US adults are estimated to have CKD.*

• 48% of those with severely reduced kidney function but not on dialysis are not aware of having CKD.

• Most (96%) people with kidney damage or mildly reduced kidney function are not aware of having CKD.

After several sites that are not new, the last new site, other than direct links to SlowItDownCKD’s kidney books, is The Kidney & Urology Foundation of America. Why did I include that? Take a look at their website. You’ll find this there:
The Kidney & Urology Foundation focuses on care and support of the patient, the concerns of those at risk, education for the community and medical professionals, methods of prevention, and improved treatment options.
What Sets Us Apart?
The Kidney & Urology Foundation of America is comprised of a dedicated Executive Board, medical advisors, educated staff and volunteers who provide individualized support to patients and their families. Adult nephrologists and transplant physicians comprise our Medical Advisory Board, Board – certified urologists serve on the Urology Board, and pediatric nephrologists and urologists represent the Council on Pediatric Nephrology and Urology.
We are a phone call or e-mail click away from getting you the help you need to cope with a new diagnosis, a resource for valuable information on kidney or urologic diseases, a window into current research treatment options or a link to a physician should you need one.

Are there any organizations I’ve left out that you feel should be included? Just add a comment and I’ll be glad to take a look at them. I am convinced that the only way we’re going to get any kind of handle on Chronic Kidney Disease as patients is by keeping each other updated.

Until next week,
Keep living your life!

How Did It Get Political?

A couple of weeks ago, I wrote about Dr. Amy D. Waterman at UCLA’s Division of Nephrology’s Transplant Research and Education Center. We’d met at Landmark’s 2017 Conference for Global Transformation. She has brought to the world of dialysis and transplant the kind of education I want to see offered for Chronic Kidney Disease. I also asked for ideas as to how I could help in developing this kind of contribution to CKD awareness… and the universe answered.

First the bad news, so you can tell when the good news come in. Here in the U.S., The National Kidney Foundation at https://www.kidney.org/news/national-kidney-foundation-statement-macarthur-amendment-to-american-health-care-act issued the following statement on May 3 of this year:
“The National Kidney Foundation opposes the American Health Care Act (AHCA) as amended. The amendment to AHCA, offered by Representative Tom MacArthur (R-NJ), raises significant concerns for millions of Americans affected by chronic diseases. If this bill passes, National Kidney Foundation is highly concerned that insurers in some states will be granted additional flexibility to charge higher premiums, and apply annual and lifetime limits on benefits without a limit on out-of-pocket costs for those with pre-existing conditions, including chronic kidney disease. The bill also permits waivers on Federal protections regarding essential health benefits which could limit patient access to the medications and care they need to manage their conditions. These limits could also include access to dialysis and transplantation. For these reasons, we must oppose the legislation as amended.


In addition, National Kidney Foundation is concerned that the elimination of income based tax credits and cost sharing subsidies, combined with the reduction in funds to Medicaid, will reduce the number of people who will obtain coverage; many of whom have, or are at risk for, chronic kidney disease (CKD).”

The world sees what stress Trump is causing our country (as well as our planet.) Yet, there is hope in the form of a new bill.

“… the bill — introduced in the House by Reps. Tom Marino (R-Pennsylvania), John Lewis (D-Georgia) and Peter Roskam (R-Illinois) — aims to:
• Have the Department of Health and Human Services (HHS) and U.S. Government Accountability Office (GAO) issue a series of recommendations to Congress on “how to increase kidney transplantation rates; how palliative care can be used to improve the quality of life for those living with kidney disease; and how to better understand kidney disease in minority populations” – to back federal research efforts;
• Create an economically sustainable dialysis infrastructure and modernized quality programs to improve patient care and quality outcomes — for instance, by creating incentives to work in poorer communities and rural areas;
• Increase access to treatment and managed care for patients with a confirmed diagnosis of kidney disease by ensuring Medigap coverage for people living with ESRD, promoting access to home dialysis and allow patients with ESRD to keep their private insurance coverage.
According to the National Kidney Foundation, more than 660,000 Americans are receiving treatment for ESRD. Of these, 468,000 are undergoing dialysis and more than 193,000 have a functioning kidney transplant.”

Thank you to the CDC at bit.ly/2rX8EG5 for this encouraging news. Although it’s just a newly introduced bill at this time, notice the educational aspects of the first point.
For those outside the U.S, who may not know what it is, this is how Medicare was defined in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease “U.S. government health insurance for those over 65, those having certain special needs, or those who have end stage renal disease.”

An interview with Trump while he was campaigning last year was included in SlowItDownCKD 2016, (11/14/16) This is what he had to say about medical coverage for those of us with pre-existing conditions like CKD. (Lesley Stahl is the well-respected interviewer.)
“Lesley Stahl: Let me ask you about Obamacare (Me here: that’s our existing health care coverage.), which you say you’re going to repeal and replace. When you replace it, are you going to make sure that people with pre-conditions are still covered?
Donald Trump: Yes. Because it happens to be one of the strongest assets.’ ….
What does the president elect say about Medicare? Those of us over 65 (That’s me.) have Medicare as our primary insurance. I am lucky enough to have a secondary insurance through my union. How many of the rest of us are? By the way, if Medicare doesn’t’ pay, neither does my secondary.”

This is from the same book:
“Here’s what Trump had to say in a rally in Iowa on December 11th of last year (e.g. meaning 2015).
‘So, you’ve been paying into Social Security and Medicare…but we are not going to cut your Social Security and we’re not cutting your Medicare….'”

We do not have the most truthful president here in the U.S., so you can see how even the introduction of the Marino, Lewis, Roskam bill is good news for us. While this is not meant to be a political blog, our pre-existing illness – our CKD – has caused many of us to unwittingly become political.


I see myself as one such person and so will be attending the AAKP Conference in St. Petersburg, Florida, in September. What’s the AAKP you ask? Their Mission Statement at https://aakp.org/mission/ tells us:

“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 more than 40 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.”

For those of you of can’t get to the Conference, they do offer telephone seminars. The next one is June 20th. Go to https://aakp.org/aakp-healthline/ for more information.

Talking about more information, there will be more about AAKP in next week’s blog.
Until next week,
Keep living your life!

Ratio: Is That Like Rationing?

urine containerA friend called me Friday night wondering what her creatinine/albumin ratio meant since that reading was high on her last blood draw. Actually, she wanted to know if this was something to worry about. After extracting a promise that she would call her doctor with her questions today when her physician’s office opened for business again, I gave her some explanations. Of course, then I wanted to give you the same explanations.

Although the Online Etymology Dictionary tells us both ratio and rationing are derived from the same Latin root – ratio – which means “reckoning, calculation; business affair, procedure,” also “reason, reasoning, judgment, understanding,” they aren’t exactly the same. My old favorite, The Merriam-Webster Dictionary defines ratio at dictionaryhttps://www.merriam-webster.com/dictionary/ratio in the following way: the relationship in quantity, amount, or size between two or more things, as in that of your creatinine and albumin.

As for rationing, if you’re old enough to remember World War II, you know what it means. If you’re not, the same dictionary can help us out again. At https://www.merriam-webster.com/dictionary/rationing, we’re told it’s “a share especially as determined by supply.” Nope, doesn’t work here since we’re not sharing our creatinine or albumin with anyone else. We each have our own supply in our own ratios, albeit sometimes too high or sometimes too low.

What are creatinine and albumin anyway? Let’s see what we can find about creatinine in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.

“Additional important jobs of the kidneys are removing liquid waste from your body and balancing the minerals in the body. The two liquid waste products are urea which has been broken down from protein by the digestive system and creatinine which is a byproduct of muscle activity.”

Well, what about albumin? This can get a bit complicated. Remember, the UACR (Hang on, explanation of this coming soon.) deals with urine albumin. There’s an explanation in SlowItDownCKD  2016 about what it’s not: serum albumin.

“Maybe we should take a look at serum albumin level. Serum means it’s the clear part of your blood, the part without red or white blood cells. This much is fairly common knowledge. Albumin is not. Medlineplus, part of The National Institutes of Health’s U.S. National Library of Medicine at https://medlineplus.gov/ency/article/003480.htm tells us, ‘Albumin is a protein made by the liver. A serum albumin test measures the amount of this protein in the clear liquid portion of the blood.’ Uh-oh, this is also not good: a high level of serum albumin indicates progression of your kidney disease. Conversely, kidney disease can cause a high level of serum albumin.”

17362522_10212181967927975_1328874508266442848_n (1)

This is from SlowItDownCKD 2015 and explains what the UACR is and why your albumin-to-creatinine ratio (UAC R) is important:

In recent years, researchers have found that a single urine sample can provide the needed information. In the newer technique, the amount of albumin in the urine sample is compared with the amount of creatinine, a waste product of normal muscle breakdown. The measurement is called a urine albumin-to-creatinine ratio (UACR). A urine sample containing more than 30 milligrams of albumin for each gram of creatinine (30 mg/g) is a warning that there may be a problem. If the laboratory test exceeds 30 mg/g, another UACR test should be done 1 to 2 weeks later. If the second test also shows high levels of protein, the person has persistent proteinuria, a sign of declining kidney function, and should have additional tests to evaluate kidney function.

Thank you to the National Kidney and Urologic Diseases Information Clearinghouse , a service of the NIH, at http://kidney.niddk.nih.gov/kudiseases/pubs/proteinuria/#tests for that information.”

Basically, that means if you have a high UACR once, get your urine retested a week or two later before you even think about worrying, which is what my friend’s doctor confirmed. But do make sure to get that second test so you can be certain your kidney function is not being compromised.

I was thrilled that both my paper and notes from the field about Chronic Kidney Disease Awareness were accepted for Landmark’s Journal for the  Conference for Global Transformation AND then be able to Journal for the Conference for Global Transformationpresent a poster about it during the conference this past weekend. In addition I was lucky enough to have lunch with one of the keynote speakers. Who, you ask? Amy D. Waterman, Ph.D.

This is one important person to us. She has changed the face of pre dialysis and transplant education globally by starting “an educational nonprofit corporation and has been awarded more than $20 million in grants…she has reached tens of thousands of people to date, educating them in the miracle of live organ donation. Last year, Dr. Waterman was invited to the White House to share about the possibility of ending the organ donor shortage.” This material is from the Journal of the 2017 Conference for Global Transformation, Volume 17, No. 1.

This is exactly what we need to do for early and moderate stage CKD. This is what the social media presence, the blogs, and the books are about. And you know what? That’s just.plain.not.enough. Last I heard, I have 107,000 readers in 106 countries. And you know what? That’s just.plain.not.enough. Am I greedy? Absolutely when it comes to sharing awareness of CKD. Do I know how to expand my coverage? Nope…not yet, that is. I am so very open to suggestions? Let me hear them!

K.E.E.P.Lest we forget, 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. As they’ve stated, “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!

 

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!

Teachers Teach

Many of you have asked that I post the interview by The American Federation of Teachers. I aim to please, so here it is.

 Gail Rae-Garwood

From NYC teacher to international health advocate

Posted August 9, 2016 by Liza Frenette

Gail Rae-Garwood talks and writes all the time about slowing down — but she’s not referring to her lifestyle speed. She’s talking about putting the brakes on Chronic Kidney Disease.

When this retired high school English teacher and United Federation of Teachers member was diagnosed with CKD in 2008, she was shocked. A new doctor detected unhealthy levels for kidney functioning in routine blood and urine workups. She was sent to a nephrologist. “I didn’t know what it was and what it meant,” she said. “I was terrified and thought I had nowhere to turn.”

She began researching and finding ways to manage this inflammatory disease through a specialized, calibrated diet, exercise, stress reduction and proper sleep. Then she realized she wanted to help others steer toward solutions. Rae-Garwood writes a weekly blog, a daily post and has published four books designed for people with CKD. She answers questions from around the world. She has spoken at coffee shops, Kiwanis Clubs, independent bookstores and senior citizen centers. She’s been a guest blogger for the American Kidney Fund, which promotes prevention activities AKF logoand educational resources, and provides financial assistance for clinical research and for kidney patients who need help with dialysis and transplants.

While she is careful about getting enough sleep and eating right, Rae-Garwood does not let any waking time slip by unnoticed. She has been interviewed on Online with Andrea, The Edge Podcast, Working with Chronic Illness, and Improve Your Kidney Help. She has been interviewed for the Wall Street Journal’s Health Matters and The Center for Science in The Public Interest.

Her action is not all talk. She also puts on the sneakers: In addition to her regular walks for health, she hustled up a team for the National Kidney Foundation of Arizona Kidney Walk.

By now, even her heart is probably kidney shaped.

Rae-Garwood also organized several talks at the Salt River Pima-Maricopa Indian Community, not far from where she lives in Arizona.

Blacks, Hispanics, Native Americans and Asians are more prone to CKD, she said. “I wanted to bring awareness everywhere I could.”NKF-logo_Hori_OB

Education is vital because so many people are unaware they even have the disease. Rae-Garwood is one of many who did not have any symptoms. “Many, like me, never experienced any noticeable symptoms. Many, like me, may have had high blood pressure (hypertension) for years before (CKD) was diagnosed. Yet, high blood pressure and diabetes are the two leading causes of CKD.”

And CKD, left unchecked and untreated, can wreak havoc and death. According to the American Association of Kidney Patients, “The increase of kidney disease is now reaching epidemic proportions. The rates are even higher among racial and ethnic minorities. Chronic kidney disease can progress to end-stage renal disease and the need for dialysis or a kidney transplant.”

Rae-Garwood’s goal is to educate people and help them with their health. “You can slow down the progress of the decline of kidney function,” she said.

And she is the very living proof that people want to see.

kidneys5“I have been spending a lot of time on my health and I’m happy to say it’s been paying off. There are five stages. I’ve stayed at the middle one for nine years and even improved my health. That’s what this is about. People don’t know about CKD. They get diagnosed. They think they’re going to die. Everybody dies, but it doesn’t have to be of CKD. I am downright passionate about people knowing this,” she said.

After her first book was published, Rae-Garwood received an e-mail from a doctor in India. He said his patients were extremely poor and could not afford the book – yet the information she wrote about was so important to them.

“He asked how I could help. I thought: ‘I could write a blog!’” she said. Her efforts began by putting her book chapters on the blog, piece by piece. The doctor in India printed them and gave them to his patients. Newer blog posts have more up-to-date information, keeping patients informed.

Her informational blog has 106,000 readers from 107 different countries, she said, based on a report from WordPress. On her blog, Rae-Garwood answers questions from readers, lists books about CKD, reports on events, lists support groups, etc. She writes about things that have worked for her, such as using a stationary bike and stretching bands, and walking  — and cautions readers to seek advice from their doctor.

The year-round outdoor climate in Arizona helps Rae-Garwood stay active. While she loved living on Staten Island, she said she owned an old Victorian that she could not afford to fix up in retirement. With an arthritis condition, she also noticed that she was “becoming a bit of a shut-in in the winter.” So she moved to the southwest two months after retiring.

GFRRae-Garwood is not letting any of that sunshine go to waste. Since her 2008 diagnosis. she’s been driving on a steady road to wellness and spreading awareness like a modern day Johnny Appleseed. In her retirement from teaching, she has devoted much time to writing, speaking and teaching about how to thwart the disease. The skills she developed in 32 years as a teacher in Brooklyn, Staten Island, Queens and Manhattan have served her well in this new role as health advocate.

Her own four self-published books are “SlowItDownCKD 2015,” “The Book of Blogs, Moderate Stage Kidney Disease Part 1,” “The Book of Blogs, Moderate Stage Kidney Disease Part2” and “What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.” The books are available online at Barnes and Noble and Amazon.

For more information on the disease and this active, 69-year-old retiree, check out https://gailraegarwood.wordpress.com.

I hope that this interview has been both enjoyable and informative. It’s how I live my life…

Until next week,

Keep living YOUR life!

To Wash or Not To Wash

Peggy Rickard belongs to the same Landmark Worldwide Center (an international personal and professional growth, training and development landmarkqrcompany) as I do here in Arizona.  I didn’t know her, but she wanted to perform a service project for one of her Landmark courses and she wanted it to deal with the kidneys. The manager of the center – the ever affable Philip Rand – knew I did “something with kidneys,” so he asked if I would call her.  When I did, it turned out that she has a medical advocacy business, but that had nothing to do with her project.

We had a wonderful conversation.  Here was someone in one of my other communities who spoke my kidney language. Peggy had already contacted The National Kidney Foundation of Arizona and learned from Dr. James Ivie, the Director of Patient Services, that what was really needed was to have the information leaflets about kidney disease and donation translated into Spanish since Hispanics are at a higher risk for kidney disease.

Kidney ArizonaMaybe I can pick out a few words of Spanish here and there, but she needed more. I couldn’t translate the leaflets into Spanish for her and didn’t know anyone who could.  That night, I went to the center for the completion session of The Wisdom Unlimited course in which I had been participating. In a greet-those-you-don’t-know moment, I spoke with Nathaniel (Nat) Garcia II – since he was the person directly in front of me – only to discover he is a missionary… and fluent in Spanish…and more than willing to do the translations.  Problem solved.

That got me to thinking about language. While taking a shower the next morning, the bottle of shampoo I was using caught my eye. It had the words ‘sulfate free’ in large letters on the label.  Hmmm, sulfate looks a lot like sulphur.  Are they related?

After checking a bunch of dictionaries, I decided to use the definition of The Medical Dictionary at http://medical-dictionary.thefreedictionary.com/sulfate since it seemed the simplest to understand.

“a salt of sulfuric acid”

Uh-oh, sulfuric means made of sulfur. Although the spelling may be different, sulfuric acid is highly corrosive. It’s also a mineral… and is used in both waste water treatment and fertilizer creation. Why would shampoo have this as an ingredient in the first place?shampoo

I figured the best person to provide an answer would be a hair stylist so I read Melissa Jongman’s article on http://hubpages.com/style/Sulfates-Are-they-damaging-your-hair-Why-to-opt-for-a-sulfate-free-shampoo

“Sulfates are detergents used to make the shampoo lather. They’re inexpensive to use in shampoos, which explains why more than 90% of shampoos contain them. The most common sulfates used in these shampoos are:

  • Sodium Lauryl Sulphate (SLS)
  • Sodium Laureth Sulphate (SLES)
  • Ammonia Laureth Sulphate (ALS)
  • TEA Lauryeth Sulfate (TEA)
  • Sodium Myreth Sulphate (SMS)”

This was not looking good.  Sulphur is something we, as Chronic Kidney Disease patients, need to avoid. As I explained in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, sulphur can further damage your already damaged kidneys.

Book CoverSo what can we do?  Not washing our hair is obviously not the answer. I googled shampoos without sulfates and came up with a list of 43 at http://sulfatefreeshampoos.org/sulfate-free-shampoo-list/#list. While the latest edit of this list was during this new year, I am not familiar with the editors nor the products. However, you can safely bet that I’ll try them.

Let’s go back to why sulfates are not good for CKD patients for a minute. I stumbled across a CKD education site called quizlet.com. Perusing this site, I found the statement that

“Very late CKD is due to reduced excretion of sulfates and phosphates.”

Of course! That makes perfect sense: as our kidney function declines, we are not excreting as much of these substances as we did before we were lucky enough (ouch!) to develop CKD and they build up.  That’s CKD 101.

A nervous me decided to see what other beauty or health products used sulfates. I discovered it’s used in body wash (Wait! Isn’t sulfate a skin irritant?), toothpaste, and nail polish. That tripped a thought. Didn’t I blog about that?

I used the search function on the blog only to find that that blog dealt with other chemicals in nail polish.  (Gritting teeth and crying out in anguish) Is nothing safe anymore? All right, pick a chemical… any chemical.

Looking at the ingredients in both hair products and nail polish, I chose phthalates. The Centers for Disease Control and Prevention (CDC) at http://www.cdc.gov/biomonitoring/Phthalates_FactSheet.html helped us out with this one:chemistry

“Phthalates are a group of chemicals used to make plastics more flexible and harder to break. … They are used in hundreds of products, such as vinyl flooring, adhesives, detergents, lubricating oils, automotive plastics, plastic clothes (raincoats), and personal-care products (soaps, shampoos, hair sprays, and nail polishes)….

How Phthalates Affect People’s Health

Human health effects from exposure to low levels of phthalates are unknown. Some types of phthalates have affected the reproductive system of laboratory animals. More research is needed to assess the human health effects of exposure to phthalates.”

Maybe the human health effects are unknown and maybe this passes quickly via the urine, but if you have Chronic Kidney Disease, you are not filtering your blood as well as other people.  Why take a chance of making it worse?

Now that I’ve probably made you fearful of using any beauty product on the market, be aware that there are many products without phthalate. Breast Cancer Action (Yes, there seems to be a connection between breast cancer and phthalates.) at http://www.bcaction.org/our-take-on-breast-cancer/environment/safe-cosmetics/phthalate-free-cosmetics/  offers a list of companies which produce phthalate free beauty aids.

DIGITAL_BOOK_THUMBNAILDigital Cover Part 2 redone - Copy

Let’s talk about service and gratitude for just a minute.  While I’ve always believed in service, it’s only since I’ve been diagnosed with Chronic Kidney Disease (way back in in 2008) that I’ve become aware of how very thankful I am for the little things in life – like spreading CKD Awareness by writing this blog, posting some CKD tidbit on Twitter daily, starting an Instagram account for SlowItDownCKD, and offering my books.  Thank YOU for being the readers.

Until next week,

Keep living your life!

Well, What About Mexico?

Last week, I was telling you about Chronic Kidney Disease in the ports of call on our delayed (but finally arrived) honeymoon, which turned out to be a family honeymoon. But then, I ran out of room to talk about Mexico and promised to do so next week. So, as in the punchline of an off color joke my dad used to tell, “Here t’is.”cozumel

Unless you’re a scuba diver like my step-daughter and her sweetheart or a partying young’un, you may have not been to Cozumel. It’s a small part of the country on the East Coast and – again – we were warned not to get off the bus unless we were told to. It’s also where we got to see some of the Mayan ruins and learn about the culture, as well as take a side trip to a cacao factory.  That smelled so good! The rest for us was some really beautiful scenery from the bus windows and an overwhelming shopping area at port.

I‘ve been to San Miguel de Allende, in Guanajuato State, for a writers’ conference and met both American and Canadian ex-patriates there as well as those that winter in the relative warmth there.  No one said it’s not safe. No one said stay on the bus or within the compound…and I got to meet the natives, too. What a lovely, warm people.

I’ve been to Ensenada decades ago and marveled at how uncommercialized it was.  Of course, I don’t know if it’s still like that. I only have my memories there. I also vague memories of visiting different areas in Mexico long ago, but vague is the operant word here.stages of CKD

Never once did I think about Chronic Kidney Disease treatment while I was there until this last time. Heck, I didn’t even know what CKD was much less that it could be treated.

So, what about Mexico? It would make sense to deal with the most shocking news first.  This is from National Public Radio in April of last year.  You can read more about the various theories as to what caused the vast number of deaths at http://www.npr.org/sections/health-shots/2014/04/30/306907097/mysterious-kidney-disease-slays-farmworkers-in-central-america

nprThis form of kidney failure, known as insuficiencia renal cronica in Spanish (or chronic kidney disease of unknown origin in English), is now found from southern Mexico to Panama, Turcios-Ruiz says. But it occurs only along the Pacific coast.

The disease is killing relatively young men, sometimes while they’re still in their early 20s. Researchers at Boston University have attributed about 20,000 deaths to this form of kidney failure over the past two decades in Central America.

(More recent reports have suggested it was severe dehydration that caused CKD in these young men.)

This is from a 2010 report published in the National Institutes of Health PubMed at http://www.ncbi.nlm.nih.gov/pubmed/20186176

In KEEP México City, CKD prevalence was higher than the overall prevalence among participants with diabetes (38%) or diabetes and hypertension (42%). Most KEEP México participants were unaware of the CKD diagnosis, despite that 71% in KEEP México City had seen a doctor in the previous year. CKD is highly prevalent, underdiagnosed, and underrecognized among high-risk individuals in México. KEEP is an effective screening program that can successfully be adapted for use in México.

Just in case you’ve forgotten, KEEP is The National Kidney Foundation’s Kidney Early Evaluation Program.K.E.E.P.

As you can probably tell, current information is not that readily available. But I didn’t give up.

I found an abstract at ResearchGate that demonstrated that the homeless in Jalisco State (on the Western Coast and the home of many Mexican traditions) had a higher incidence than the poor for undiagnosed hypertension and diabetes in 2007. You can look at the exact numbers in this small study at http://www.researchgate.net/publication/260208642_Chronic_kidney_disease_in_homeless_persons_in_Mexico

Finally, something more recent! Brazilian Journal of Medical and Biological Research offered this information in their March 6, 2015 online issue.

BraziiIn Mexico, CKD prevalence among the poor is two-to three-fold higher than the general population, and the etiology is unknown in 30% of ESRD patients ….In Mexico, the fragmentation of the health care system has resulted in unequal access to RRT. In the state of Jalisco, the acceptance and prevalence rates in the more economically advantaged insured population were higher (327 per million population [pmp] and 939 pmp, respectively) than for patients without medical insurance (99 pmp and 166 pmp, respectively). The transplant rate also was dramatically different, at 72 pmp for those with health insurance and 7.5 pmp for those without it.

You may need some help understanding this, especially if you go to the source at http://www.scielo.br/scielo.php?pid=S0100-879X2015000500377&script=sci_arttext, so here it is. ESRD means End Stage Renal Disease, the point at which your body is no longer serviced by your kidneys and you need dialysis or a transplant. RRT is renal replacement therapy or, as we know it, dialysis or transplant.

And lastly from the Clinical Kidney Journal from January 20th of this year at http://ckj.oxfordjournals.org/content/early/2014/11/25/ckj.sfu124.full

In Mexico, the mortality on peritoneal dialysis is 3-fold higher among the uninsured population compared with Mexican patients receiving treatment in the USA, and the survival rate is significantly lower than the insured Mexican population….

Did you notice how often poverty and insurance were mentioned in the article (if you went to the websites)? I don’t know enough to make any conclusions, but it just might be that lack of money is at the root of such poor outcomes.

IMG_1398Meanwhile, between our honeymoon and a little jaunt to Las Vegas to meet cousins from New Hampshire when they come out to visit their mom who lives in Vegas, I am proud to say I am single handedly indexing The Book of Blogs: Moderate Stage Chronic Kidney Disease, Parts 1 and 2… and enjoying it! Expect an announcement when the indexes are ready.

But, hey, why wait for announcements?  Starting this afternoon, there will be a giveaway for What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.  Poor baby keeps getting ignored while I work on its younger twin siblings.

I’d better get back to those indexes.

Until next week,Book Cover

Keep living your life!

Going Mental

Ilana Contest Winner!  Congratulations to Ilana Lydia for winning the photo contest for the Weirdest Place to read one of my CKD books.  She took a little poetic license and had her cat read the digital version on her computer.  I never would have thought of that… or my Bear’s reading one of the books while welding or Abby’s reading one while walking the tightrope and twirling a hoola hoop.  (They were disqualified because they’re immediate family.)

Thanks for all the entries, you creative readers, you. Ilana, please contact me privately so I can send you a brand new, personally inscribed copy of The Book of Blogs: Moderate Chronic Kidney Disease, Part 1.  If any of you have a contest idea you’d like to have me run, just let me know.  This contest idea was from avid reader, Geo DeAngelo.  Thanks again, Geo.DIGITAL_BOOK_THUMBNAIL

Aha, looks like there’s a free Path to Wellness health screening coming up. This one is in Mesa, Arizona, at Adelante Healthcare 1705 W. Main St. on the 20th from 8 to 1:30. That’s a Saturday. There are two requisites here: you must be over 18 and have a nuclear family member with diabetes, heart disease, or kidney disease OR a history of diabetes or high blood pressure yourself.

Path to Wellness screenings include the screening itself, immediate blood and urine results, doctor consult, onsite health education, 6 week Healthy Living Workshops, and help finding a family doctor.  Just call the National Kidney Foundation of Arizona for an appointment at 602 840 1644 for English speakers or 602 845 7905 for those who would prefer Spanish.NKF-logo_Hori_OB

Have I mentioned enough times that this screening is free?  Early diagnose is important so you can slow down the progression of the disease. You can’t be treated for the disease if you don’t know you have it.  Now you’ve just lost the ‘I don’t have the money for that’ excuse.  Be good to yourself and get screened.

Now, about that blog title.  You know when you have a preconceived notion that you seem to make things come out that way?  Okay, we all go for periodic blood tests.  The procedure is called venipuncture which simply means puncturing the vein. Since I’m on a cholesterol medication, it’s once every three months for me.  I went for the blood draw on Friday.

There are two phlebotomists at the Lab Corp attached to my PCP’s practice.  One is so heavy handed that it hurts and I have discreetly requested that 1. She not draw my blood and 2. She be told why I made that request.  It turns out this was not news to her, yet she continues to work there. She was not the problem this time.Abby book

The other phlebotomist has the touch of a butterfly and a great deal of personality to boot.  I know if she draws my blood, it’s not going to hurt. My veins are also becoming ‘difficult’ after all these years of blood tests.  They roll, collapse, or seemingly disappear. I just realized these problems are all associated with elderly patients.  Hey, I’m not there yet! Truthfully, some of these problems may have to do with the placement and depth of the needle. If you’re interested, there’s a fairly easy to understand ARO Onsite Training and Consulting (for phlebotomists) site at blood drawhttp://arotraining.com/images/Documents/Venipuncture%20Module%206_Venipuncture%20Complications%20and%20Special%20Circumstances.pdf

Finally, we get to the mental part.  While I knew the preferred phlebotomist wasn’t going to make me hurt – other than the initial pinch – it did hurt. I just didn’t experience the sensation that way. I have a close to the surface vein in my upper left arm and, after palpating but not finding a really good vein in the crooks of either of my elbows or the back of my hands, she decided to use that one… with my blessing.  I’d been wondering why no one ever tried that vein before. Note the size of the bruise this resulted in:IMG_1220

It worked for 1 ½ of the 3 tubes that were needed, then it collapsed.  She knew I’d have a whopping bruise, but I still didn’t feel the pain I should have been feeling according to my past experience of venipuncture and hers.  Why?

Ah, the brain is a marvelous thing. According to About Health at http://pain.about.com/od/whatischronicpain/a/feeling_pain.htm

Special pain receptors called nociceptors activate whenever there has been an injury, or even a potential injury, such as breaking the skin or Bear and bookcausing a large indentation.

Venipuncture, although it is to help keep you healthy, is an injury to the skin and vein.  So have I somehow been manipulating my nociceptors? No, I don’t think so.

There are many sites on the internet that explain how you can use visualization, transference, mental imagery, meditation, and other such techniques to lessen chronic pain. That’s not what I was dealing with. I knew, absolutely knew, I wasn’t going to experience any pain. I usually do some deep breathing, do not look at the site being punctured (wrote a whole blog about that a few years ago), and cracked jokes with the young lady performing the procedure.

In other words, there was no anxiety, no fear, no foreboding, just a simple case of I-have-to-do-this-therefore-I-will-and- I-will-experience-the-pain-as-mildly-annoying. I know. I know. I wish I could do this at the dentist’s office, too.

brainI had expected to offer you loads of scientific information about this from alternative medicine sites, but they all seem to say the same thing I just did.  Over 40 years ago, I was involved with Seagull Mind Training. That was a company (now defunct) that claimed to teach you how to use more of your brain power. I say we are using more, all of us, with the quest into mind/body connection, alternative and complementary medicine, and an overall awareness of our general good health. The difference is that we now accept this as commonplace.

While this is not something I would try with major surgery, you might be surprised at how well it works during your next blood draw.

Poor books seem to get ignored until the very end of my posts lately.  I urge you to share, people, share. If you’ve bought the Kindle version, there is a share program available. You can also ask your library to order copies.

Until next week,

Keep living your life!Digital Cover Part 2 redone - CopyWhat is it

The CKD/Diabetes Dance

Welcome to the last blog for National Kidney Month. First thing I want to do is let you know it’s been made abundantly clear to me that I should be promoting my books {never thought of myself as a sales person} as a way to help spread awareness of Chronic Kidney Disease.Digital Cover Part 1

Book Cover

Here goes: What is It and How Did I Get It? Early Stage Chronic Kidney Disease, The Books of Blogs, Part 1 and The Book of Blogs, Part 2 are all available in both print and digital on Amazon.com.

Students: do NOT rent any of these for a semester.  The cost for that is much higher than buying the book.  Having been a college instructor, I know you sometimes have to buy your textbooks before the class begins and the instructor has the chance to tell you this.

Everyone else, there are programs available on Amazon to share the books with others, buy a digital copy at minimal cost if you’ve ever bought a print copy, and periodic free days. Oh, and please do write a review once you’ve read the books.Part 2

Another way I’ve been spreading awareness of CKD this month is by guesting on a radio show last Monday night.  Many thanks to Andrea Garrison of Online with Andrea for celebrating National Kidney Month by interviewing me about CKD. Hopefully, you’ve already heard it but here’s the link anyway: http://www.blogtalkradio.com/onlinewithandrea/2015/03/23/chronic-kidney-disease

onlinewithandreaStill uncomfortable with selling my books, although not at all with spreading Chronic Kidney Disease Awareness, I’m glad to move on to the topic of the day which is what does Diabetes, Type 2 do to your kidneys.  I’ve been researching this, and have found quite a bit of information about Diabetes causing CKD, but not that much about developing Diabetes, Type 2 while you have CKD.

blood glucoseThe obvious thing to do here was to start with the American Diabetes Association at http://www.diabetes.org/diabetes-basics/type-2/facts-about-type-2.html.

When glucose {blood sugar} builds up in the blood instead of going into cells, it can cause two problems:

Right away, your cells may be starved for energy.

Over time, high blood glucose levels may hurt your eyes, kidneys, nerves or heart.

Okay, that would help explain why I’m so tired most of the time, but I’m more interested in how Diabetes “may hurt your…kidneys….” right now.

DaVita at http://www.davita.com/kidney-disease/diabetes/the-basics/diabetes-and-chronic-kidney-disease/e/427  explained how and effectively:

When there is too much sugar in your blood, the filters in your kidneys (called nephrons) become overworked.

Tiny blood vessels {glomularli}  transport blood that needs to be filtered into the nephrons. Excess blood sugar can damage these tiny vessels, as well as the nephrons themselves. Even though there are millions of nephrons, the healthy nephrons must work harder to make up for the ones that are damaged. Over time, the healthy nephrons will become overworked and damaged if your blood sugar remains high. Your kidneys may lose their ability to filter fluid and wastes and may no longer be able to keep you healthy.

CKDThis sounded awfully familiar to me, especially the last part. Well, no wonder!  On page 82 of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I wrote the following.

… a number of nephrons were already destroyed before you were even diagnosed {with CKD}. 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.

Two different diseases, both of them damaging your kidneys in the same way.  Wait a minute here.  I already have kidney damage to the tune of a GFR of 49.  Does this mean I’m in real trouble now with the pre-diabetes that’s been being treated for the last couple of weeks?

Well, no.  The idea of treating the pre-diabetes is so that it doesn’t become Diabetes.  The principle is the same as it is with CKD: catch it early, treat it early, prevent more damage if possible.

But wait.  There are more similarities between CKD and Diabetes, Type 2.  According to The American Kidney Fund at http://www2.kidneyfund.org/site/DocServer/Diabetes_and_Your_Kidneys.pdf?docID=222

African Americans, Native Americans, Latin Americans and Asian Americans are more likely to have Type 2 diabetes.

 Back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, page 13 this time.races

Nor was I a Native American, Alaskan Native, Hispanic, Pacific Islander or Afro-American, ethnic groups that have a 15 to 17% higher occurrence of CKD.

No wonder Diabetes can cause CKD.  Now I’m wondering if CKD can cause Diabetes or if the two are simply concurrent most often. While the infograph from Healthline at http://www.healthline.com/health/type-2-diabetes/statistics-infographic didn’t answer this question, the information included was too good to pass up. I urge you to take a look at it for yourself by simply clicking on the address.

The following simple, yet eloquent, sentence leaped out to me as I read a study published in the 2010 American Society of Nephrology Journal at http://cjasn.asnjournals.org/content/5/4/673.full.pdf

CKD prevalence is high among people with undiagnosed diabetes and prediabetes.

 Maybe that’s the key: undiagnosed.  I know I wasn’t particularly worried about the several years of a high A1C test result until I heard the word pre-diabetes.  Whoops! Time for a reminder of what this A1C test is from page 54 of my first book.

insulin resistanceThis measures how well your blood sugar has been regulated for the two or three months before the test.  That’s possible because the glucose adheres to the red blood cells.

While I may not fully understand if CKD can cause pre-diabetes or Diabetes, type 2, it’s very clear to me that the two MAY go hand in hand.  There’s no reason to panic, folks.  But there is plenty of reason to have yourself tested for both pre-diabetes and Diabetes, type 2 via the A1C.  After all, you have CKD.

Until next week,

Keep living your life!