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

“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:




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 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 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:


  • 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:


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


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


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!

It Hurts, But Just a Little

Are you watching out for your health? It’s been pretty busy over here with Bear’s retirement, the impending death of a loved one, Nima’s visit to say goodbye to Cheryl, and life in general.  That might explain why I just plain forgot about watching out for mine – specifically, the pain in my shoulder. Bear is officially retired, Nima’s gone home, there’s nothing more to do for Cheryl and it’s life as usual so the pain is back.  It hurts, but just a little.  NSAIDS are out of the question, or are they?
I forgot to mention my computer is fried (Do you think I use it too much?), so I pulled out my trusty laptop to write this blog… and found some interesting – if older – articles I’d saved. The first one to hit my eye (figuratively, literally would have prompted a whole new discussion of pain killers!) was about the NSAID controversy. NSAID means Non-Steroidal Anti-Inflammatory Drug. Steroids have an adverse effect on the kidneys in that they strain the kidneys during filtration.

One of these articles discusses weighing the risk against the benefits of taking NSAIDS. I also have osteoarthritis, but prefer to take Limbrel – a food medication (by prescription only) to deal with the pain preventatively.  I am afraid of damaging my kidneys further and am not willing to take NSAIDS. I went off the Limbrel for a while since it’s so expensive, but noticed the pain in my elbows right away. That’s when I decided the cost of the Limbrel was worth it if it meant no NSAIDS. That was my personal version of weighing the risks against the benefits. You can read this article at

Reading MedScape’s coverage of the same study made me realize that 96% of the mild CKD patients in the study were unaware of their diagnose. This article at also mentions that at the 2011 date of publication  far more patients were aware of their diagnose than during the actual study which took place between 1999 and 2004.  I think it’s this careful communication between nephrologist and patient that allows us, as the patients, to make informed decisions for ourselves.

I would like to see more of this, though.  I’m still waiting for my own nephrologist to call me back about the steroidal drugs I was given during my cataract surgery although I clearly explained to the ophthalmologist that I have CKD and wanted nothing that would harm the kidneys.  I’m beginning to wonder if doctors other than nephrologists know what drugs are harmful to the kidneys. But, then again, I’m also wondering why my specialist can’t either return a phone call or ask his MA to do so. Am I nervous about this? You bet. I am actually looking forward to seeing my primary care doctor (that’s right: primary care) for my quarterly blood test since she also orders a GFR reading.

Keeping the drug theme going, you may have noticed comments from Colleen Cheuvront about a drug treatment for late stage CKD with type 2 diabetes. While the drug is in phase 3 trials, I have found quite a bit of information on it and some of that not quite as positive as Colleen would have us believe.  By the way, Colleen, thank you for bringing Bardoxolone Methyl to my attention.  I will be watching the results of the trials very closely.  I am trying so hard to avoid dialysis and this just might be helpful. I don’t have diabetes of any type, but am hoping if this drug is successful, it may lead to the discovery of a drug for CKD that is effective even if you don’t have diabetes. (Hello, Pollyanna, haven’t seen you in a while.)

According to the US National Library of Medicine (, Bardoxolone Methyl does accomplish what the manufacturer says it does: ”  increases estimated GFR,  and decreases BUN, serum phosphorus and uric acid concentrations in patients with moderate to severe CKD. ”  However, it also raises albuminuria – not good for CKD patients. No mention of diabetes was noted here.

As for side effects, The New England Journal Of Medicine mentions not only the muscle spasms, but the more common gastro-intestional adverse reactions. (  Right now, the internet is awash with information about this new drug.  I am neither pro nor con, so I’d recommend you research it.  This could be very exciting!

I just realized the book is on sale not only in Europe as well as the United States, but also in India where the blog has 1,300,000 readers.  The word about CKD is getting out there.  I feel so gratified.  Be sure to tell those who need it where they can get the book or read the blog.  Remember that if they cannot afford the book and want to read it they need only send me the name and address of their nephrologist.  Then I’ll visit my pretty little local post office (well, it’s really the setting of the building that’s so pretty) and mail a copy out to the doctor. For those of you not feeling the effects of the economy, look for the book in print and/or digital at or  You know, you can always leave a message for me at 623-266-2609 to order a book or ask questions.  I’m laughing now because I realize I haven’t been this available since I was a single working mom with little kids.


Until next week,

Keep living your life!

Regenerative Medicine Or Last Year’s Science Fiction Becomes The Future’s Science

It’s Monday again and I found a slew of interesting comments just waiting for me when I came to the blog.  The material, as I just wrote, was interesting but I can’t comment on them in the blog because each and every one of them contained advertisements.  I am uncomfortable endorsing any product I haven’t either tried myself or researched. I’m wondering if any of the people who sent these informative comments that contained advertisements would be interested in offering the information without the advertisements. I, on my part, would be more than willing to consider running guest blogs after I have the time to review the information.

July 4th, Independence Day, is Wednesday. The picture below, one I took at Niagara Falls, somehow epitomizes independence to me – something about how freely and differently each drop of water makes the fall.  There’s another kind of independence down the pike for us – independence from the dialysis that is the only alternative now for ESRD sufferers.

Okay, now get ready to be amazed and learn a new word: “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 {as CKD patients, that word should be more than familiar} and wrap their long ‘feet’ {pod is Greek for foot, just as ped is Latin for root} 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 {sound familiar?}…’The implication is that podocytes may utilize recognized pathways of regeneration to renew themselves throughout life,’ said Artandi (associate professor of medicine Steven Artandi, MD, PhD. and senior author of the study). People suffering from chronic kidney disease {that’s us} may simply have worn out or outpaced their podocytes’ capacity for renewal, he believes.

Now that the researchers know podocytes have the ability {to}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.'”

According to the article, there is a possibility in the future of coaxing our own bodies to produce more of these podocytes to replace those that have died. This is another new way of treating chronic kidney disease.  Add this to cloning, artificial kidneys, external mechanical kidneys and the future holds just so many more options than three different types of dialysis.  I, for one, am so encouraged I can feel my heart leaping in my chest (well, maybe not, but I am super encouraged.)

The entire article can be found at:

In the same vein {Get it? Medical term? Vein?}, are you aware that kidneys can be 3D printed?  I had to read that sentence twice myself.  Then I started wondering WHY even bother making a 3D print of a kidney.  Read on Wake Forest University’s Anthony Atala explains :

“For example, the talk {above the transcript at the address below} highlights our still-experimental work to engineer a human kidney. Being able to replace solid organs such as the heart, liver, kidney {note that – kidney} and pancreas is considered the ‘holy grail’ of tissue engineering. That’s why we’re pursuing multiple strategies in this area: cell therapies, tissue ‘inserts’ to augment an organ’s function, and ‘printing’ replacement organs.

At TED {TED stands for Technology, Entertainment Design}, we demonstrated 3-D printing technology, already used in a variety of industries — from auto parts to concrete structures. Our goal, or course, is to apply the technology to organs. The project is based on earlier research in which we engineered miniature kidneys {hurray!} using biomaterials and cells. In animals, these structures were shown to be functional, in that they were able to filter blood and produce dilute urine.

This printer, while still experimental, is being explored for organs such as the kidney {ahem} and structured tissue such as the ear. The ultimate goal is to use patient data, such as from a CT scan, to create a computer model of the organ we want to print. This model would be used to guide the printer as it layer-by-layer prints a replacement organ made up of cells and the biomaterials to hold the cells together. ”

The entire article is at:

The FDA is on board, too, with their Innovation Pathway program which was launched in 2010 to reduce the time and cost of bringing safe and effective breakthrough technologies to patients.These three aimed at kidney patients were approved earlier this year:

  •  An implantable Renal Assist Device being developed by the University of California, San Francisco.
  • A Wearable Artificial Kidney in development by Blood Purification Technologies Inc. of Beverly Hills, Calif. {discussed in a blog last month}
  • A Hemoaccess Valve System that has been designed by Greenville, S.C.-based CreatiVasc Medical.
You can read more at:
The future for chronic kidney disease patients is almost here and it is encouraging.  For now, there’s always my book.
Until next week,
Keep living your life!

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

The URL for this article is

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!