runnersOn your mark, get set, test!  Or not.  It all depends upon which news articles you’ve been reading lately.  You’d think it was a no brainer to automatically test for Chronic Kidney Disease when 60% of the U.S. population is at risk and more than 28,000 of those that do have the disease don’t know they have it. That’s what you’d think, but not necessarily what your doctors think.

Then there’s the matter of so what?  That’s what I call reporting test results, but not acting upon them.  According to The Clinical Journal of the American Society of Nephrology (CJASN) at http://cjasn.asnjournals.org/content/early/2013/10/31/CJN.02490213.short?rss=1,

“Automated eGFR laboratory reporting improved documentation of CKD diagnoses but had no effect on nephrology consultation. These findings suggest that to advance CKD care, further strategies are needed to ensure appropriate follow-up evaluation to confirm and effectively evaluate CKD.”sad face

That was more than a year ago.  So much has happened since then.

Yet, MedlinePlus, A service of the U.S. National Library of MedicineNational Institutes of Health at  http://www.nlm.nih.gov/medlineplus/news/fullstory_141748.html posted an article from the American College of Physicians (ACP) which firmly suggests NOT routinely testing symptom free patients who have no risk factors while, at the same time, suggesting different methods for treating different symptoms  at different stages.  For the only time I can remember, I ended up sitting in my office chair staring at my computer screen scratching my head in confusion after reading an article on this site.  How can you treat what you don’t know you have since you haven’t been tested for it? To make matters worse, most of the early stage of CKD ARE symptom free. In this October, 2013, report, I found the following statement:

“There is no evidence that evaluated the benefits of screening for stage 1-3 chronic kidney disease,” ACP president Dr. Molly Cooke, said in a news release issued by the group. “The potential harms of all the screening tests — false positives, disease labeling, and unnecessary treatment and associated adverse effects — outweigh the benefits.”GFR

Wait a minute here, folks.  I was diagnosed at stage 3 and have spent the last five years battling to stay in stage 3.  Don’t you think I’d rather be battling to stay in stage 1?  Or even stage 2?  You’ve got it backwards, Dr. Cooke.  I’d rather deal with the labeling, the chance of a false positive, etc. and have caught this disease earlier so it never got to stage 3. I like living more than I do being label free, ma’am.

Now for the other side of the coin.  That same month, the American Society of Nephrologists (ASN) – which, come to think of it, is the first group whose articles I started reading when I considered writing a weekly blog – came out in support of routine testing calling CKD “a silent killer.” This is more to my liking.  They talked about the chance to slow down, or perhaps even stop,  the  progression of the illness once you know you have it  and the fact that the procedure is not only lifesaving, but low  cost. (I’ve already spoken with some readers about new headshotthis and they thought the cost might have been prohibitive.) You can read the article for yourself at http://newswise.com/articles/asn-emphasizes-need-for-early-detection-of-kidney-disease-a-silent-killer-in-the-u-s.

The National Kidney Foundation spokesman, Dr. Leslie Spry, had some interesting things to say about CKD in his Sept. 2013 blog in the Huffington Post:

“We, as a society, need to take kidney disease — which kills more Americans than breast cancer and prostate cancer combined — seriously, or the human and financial costs may become unbearable.”

He was referring to both the approximately $60 billion dollars the government spends on treating CKD annually and the need for those over 60 to be routinely tested.  The address for this particular blog of his is http://www.huffingtonpost.com/leslie-spry-md-facp/kidney-disease_b_3860079.htmlGlomerulus-Nephron 300 dpi jpg

According to Dr. Spry, too many people think of CKD as just something that happens as you grow older.  I know I didn’t.  Actually, I hadn’t yet realized I was growing older.  It was happening, but I wasn’t paying any attention.  It was the CKD – something I’d never heard of until I was diagnosed – that drove that fact home to me.

The whole purpose of the book, the blog, the Facebook page, and the tweets for both What Is It and How Did I Get It? Early Stage Chronic Kidney Disease and SlowItDown is to inform people about testing for CKD, and then becoming educated about the disease.  Read the book, look at the Facebook pages and grab some of those daily tweets.  You don’t need to be shocked out of your socks at age 60 with the news that you have some disease you never heard of that may threaten your life like someone very close to me was. (Uh, so close we live in the same skin.)Book Cover

Talking about the book, Amazon.com has come up with a deal I really like as a way of getting the word about CKD out to those who need it even more quickly. When you order a print copy of the book from Amazon, you can also buy the digital edition for $2.99. You get two for not much more than the price of one.  And don’t forget that you can share your Kindle books.  Amazon has been a pleasure to deal with from day one.

Oh, look at the date!  Tomorrow evening – from 5:30 to 8:30 – SlowItDown will be participating in the Health Fair in the Salt River Pima – Maricopa Indian Community.  It is open to the public, so feel free to meet us there.

For those of you who have texted, called, and messaged about Bear’s surgery, thank you again and again.  While he still cannot bear weight on the foot – even with his glow green in dark non-weight bearing cast – he is getting so good with the knee scooter that one of our almost sons-in-law was able to take him over to Rockler’s (the wood working shop where Bear works part time) and then to dine at Claim Jumper’s on Saturday.  While the excursion wiped out his energy for the next couple of days, Bear was a happy man.  Thank you, Sean.  Lara and Alex, your coming over so often has kept Dad’s spirits up  more than you know.Bear's foot

Until next week,

Keep living your life!

Getting Back To Basics

This is what early stage CKD looks like

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

Living a full life after a chronic kidney disease diagnosis

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

Tips for living a full life with chronic kidney disease

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

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

Knowledge helps you live a full and happy life

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

Communicate honestly with your health care team

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

The kidney diet, medication and other lifestyle tips

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

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

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

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

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

Think positive after your diagnosis

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

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

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

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

Until next week,

Keep living your life!

EPO Good, No, EPO Bad

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

Blood protein EPO involved in origin and spread of cancer

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

Yihai Cao Photo: John Sennet

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

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

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

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

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

EPO: Lighting the Fires of Cancer

By Peter Laird, MD

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

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

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

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

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

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

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

Until next week,

Keep living your life!

This is what early stage CKD looks like

Notices for the New Year

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

I  have two pre-blog notices for you today:
What a way to start the year! KevinMD will post an excerpt from the book sometime around 7 p.m. today on: http://www.kevinmd.com/blog/2012/01/chronic-kidney-disease-patient-perspective.html
The correct info for the Jan. 9 Twitter chat from 8-9 EST is: #LibreChat.  Hey, I’m still learning. 
Meanwhile, again, the very best new year to you and yours.

Will This Really Be Possible?

Are you so busy in this period between Thanksgiving and Chanukah/Christmas/Kwaanza/ whatever other celebration I don’t know about that you haven’t had the chance to keep up with the chronic kidney disease world?  Relax: that’s what this blog is for.  Besides, this may very well be a gift for you – albeit not this year. Honestly, I’d settle for this gift anytime before I hit the need for dialysis.

If you’ve read the book or the earliest blogs, you know I have an irrational revulsion toward dialysis.  It’s an emotional reaction and one that rears its ugly head every time I think about the process.  Maybe I don’t have to have that reaction any more.  Maybe dialysis won’t be necessary any more.  I know I sound delusional, but let’s hold off on that opinion until after you read this article from MedIndia. It’s a bit long, but well worth the read.

Hope for Treating Chronic Kidney Disease Via Regeneration of Specialized Cells

                 by Kathy Jones on  December 06, 2011 at 7:26 PM                         Genetics & Stem Cells News        
Pedocytes are specialized type of epithelial cells in the kidney, which get damaged in more than 90 percent of all chronic kidney disease cases.
 Hope for Treating Chronic Kidney Disease Via Regeneration of Specialized Cells
Now researchers at the Stanford University School of Medicine have uncovered an unexpected pathway that reveals for the first time how these cells may regenerate and renew themselves during normal kidney function.

This finding is an important step toward one day therapeutically coaxing the cells to divide, which could be used to treat people with chronic kidney disease.

“Researchers have studied these cells for years, but the prevailing view has been that they don’t renew themselves,” said associate professor of medicine Steven Artandi, MD, PhD. “Now we’ve found that podocytes can enter and leave the cell cycle in response to certain common signaling pathways.”

Artandi is the senior author of the study, which will be published online Dec. 4 in Nature Medicine. The first author of the work is former postdoctoral scholar Marina Shkreli, PhD, who is now at the Laboratory of Biology and Pathology of Genomes at the University of Nice in France.

Podocytes are found only in the kidney and are an integral structural component of its blood-filtering system. They stand shoulder-to-shoulder in a part of the organ called the glomerulus and wrap their long “feet” around the semi-permeable capillaries through which blood flows. Narrow slits between the feet allow small molecules, such as water and salts, to pass while blocking large proteins.

This filtering process is the first step to forming urine, and it is critically important — even one missing cell can leave a gap that would allow unwanted molecules through the barrier. (Imagine wrapping your hands around a length of leaky garden hose so that the water seeps out between your fingers. Lift up one finger and you’re liable to get sprayed in the face.)

This may be why previous researchers searching for signs of self-renewal in podocytes were unsuccessful, because any such renewal or replacement would likely need to be carefully orchestrated to avoid compromising the filtration system. As a result, scientists have been forced to conclude that the podocytes rarely, if ever, divided.

“It used to be thought that you were born with podocytes, and you died with the same podocytes — you don’t make any more during your lifetime,” said Artandi. The only exception was certain rare types of kidney disease in which the podocytes abandon their blood-filtration duties en masse to de-differentiate into less-specialized, dividing cells that little resemble their predecessors. As a result, the glomerulus collapses and the patients’ kidneys begin to fail. One such disease is HIV-associated nephropathy, or HIVAN.

The problem was, such a scenario doesn’t make a lot of evolutionary sense — particularly when other epithelial cells routinely regenerate themselves. “Podocytes are vitally important, and are also under enormous physical stress,” said Artandi. “It’s hard to understand why we would have such a vulnerable blood-filtration system.”

To understand more about kidney biology, Artandi and Shkreli investigated the role of a protein component of the telomerase complex called TERT. Although telomerase is best known as an enzyme involved in cell aging, recent research in Artandi’s lab and others have shown that TERT also plays a role in many types of cellular regeneration.

The researchers found that temporarily increasing the expression of TERT in adult, otherwise healthy laboratory mice caused the formerly stolid podocytes to abruptly de-differentiate and begin dividing. As a result, the glomerulus collapsed in a way that resembles what happens in humans with HIVAN. Conversely, ceasing the overexpression allowed the cells to stop dividing, re-specialize and resume their normal functions.

When Artandi and Shkreli looked closely at the glomeruli in humans with HIVAN, they found that TERT expression was increased. Equally important, the Wnt signaling pathway, which is important in embryonic development and in the self-renewal of stem cells, was also activated. (Previous research in the Artandi lab has linked telomerase activity to the Wnt pathway.)  Blocking Wnt signaling in a mouse model of HIVAN also stopped the podocytes from dividing and improved their function.

“The implication is that podocytes may utilize recognized pathways of regeneration to renew themselves throughout life,” said Artandi. People suffering from chronic kidney disease may simply have worn out or outpaced their podocytes’ capacity for renewal, he believes.

Now that the researchers know podocytes have the ability regenerate in response to common cellular signals, their next step is to learn whether this regeneration occurs in healthy animals and people. “If we can harness this regeneration,” Artandi said, “we may one day be able to treat people with chronic kidney disease.”

In addition to Artandi and Shkreli, other Stanford researchers involved in the study include medical resident Kavita Sarin, MD, PhD; graduate students Matthew Pech and Peggie Cheung; medical student Woody Chang; lab manager Stephanie Brockman; former research assistant Eunice Lee; research associate Frank Kuhnert, PhD; and associate professor of medicine Calvin Kuo, MD, PhD.

The research was funded by the National Institutes of Health, the Stanford School of Medicine, the Stanford Center on Longevity and the Glenn Laboratories for the Biology of Aging at Stanford. Information about Stanford’s Department of Medicine, which also supported the work, is available at http://medicine.stanford.edu.

The URL for this article is  http://www.medindia.net/news/Hope-for-Treating-Chronic-Kidney-Disease-Via-Regeneration-of-Specialized-Cells-94388-1.htm

On the book front, Nima Beckie – a columnist for Skorch and my daughter, the writer – recommended the book as a Christmas gift.  That was an unexpected gift from daughter to mother!  Don’t forget the book signing at Next Coffee Company, 19420 N 59 Ave., Glendale, Az. 85308; I really enjoy meeting my readers in person.  Looking ahead to the new year, there’s a twitter chat coming up in January, another radio show in March (which is National Kidney Month) and possibly another book signing along the way. I hadn’t realized that getting my book into the hands of every newly diagnosed Chronic Kidney Disease patient would be so much fun!

Until next week,

Keep living your life!