Dialysis is Now Old Enough to Have Its Own Museum

You know kidney disease advocates sort of bond together, right? I somehow magically ran across Steve Weed, a two time transplant recipient who has his own web development company that specializes in social media planning: Landau Digital Solutions. Actually, he unwittingly led me to the publisher of my first book: What Is It and How Did I Get It? Early Stage Chronic Kidney Disease before I even knew what he did for a living. But I digress.

While recovering from his recent transplant, Steve posted about visiting a dialysis museum. I found myself mystified that such a thing existed. Wasn’t dialysis only about fifty years old? Who had a museum about such a young invention?

Then I realized that I had never written about the history of dialysis. Maybe it was older. So I did a little digging for us. Will you look at that! The idea of dialysis is much older than I’d thought. This is from Renal Med at http://www.renalmed.co.uk/history-of/haemodialysis:

“Scottish chemist Thomas Graham, known as the ‘father of dialysis’, first described dialysis in 1854. He used osmosis to separate dissolved substances and remove water through semi-permeable membranes, although he did not apply the method to medicine

He worked as a chemist in Glasgow University at around the same time as physician Richard Bright was describing the clinical features and diagnosis of renal failure in Edinburgh. He noticed that crystalloids were able to diffuse through vegetable parchment coated with albumin (which acted as a semi-permeable membrane). He called this ‘dialysis’. Using this method he was able to extract urea from urine. Graham prepared a bell-shaped vessel….”­

This was the seed that later became hemodialysis, which is defined by MedlinePlus (part of the U.S. National Library of Medicine) at https://medlineplus.gov/dialysis.html in the following way:

“Hemodialysis uses a machine. It is sometimes called an artificial kidney. You usually go to a special clinic for treatments several times a week.”

The difference in spelling is due to the variations between British English and American English.

Another step in dialysis becoming dialysis as we know it today is:

“The first human hemodialysis was performed in a uremic patient by (Me: His given name is Georg.) Haas in 1924 at the University of Giessen in Germany…. He used a tubular device made of collodion immersed in dialysate solution in a glass cylinder. Haas was able to calculate that the total non-protein nitrogen removed was 2,772 g. He also showed that the presence of some uremic substances in the dialysate and that water could be removed from the blood. In 1928, he first used the anticoagulant, heparin. In 1937, the first flat hemodialysis membrane made of cellophane was produced, which is produced in similar manner to cellulose, but dissolved in alkali and carbon disulfide…. The resulting solution is then extruded through a slit and washed multiple times to obtain a transparent semipermeable material.”

I found the information on the Advanced Renal Education Program site at https://www.advancedrenaleducation.com/content/history-hemodialysis.

Then, finally, dialysis as we know it. DPC Education Center (Dialysis Patient Citizens) at http://www.dpcedcenter.org/brief-history-dialysis provided this information.

“The history of dialysis dates back to the 1940s. (Me here again: although we know the seeds for the dialysis were planted much earlier.) The first type of dialyzer, then called the artificial kidney, was built in 1943 by Dutch physician Willem Kolff. Kolff had first gotten the idea of developing a machine to clean the blood after watching a patient suffer from kidney failure. When his invention was completed, he attempted to treat over a dozen patients with acute kidney failure over the next two years. Although only one treatment turned out successful, he continued to experiment in improving his design.”

The sources use many words you may not be familiar with. IvyRoses at http://www.ivyroses.com/HumanBody/Urinary/Urinary_System_Kidney_Dialysis.php was able to help us out here.

Parts of a Kidney Dialysis Machine

Dialysis Membrane (sometimes referred to as simply a ‘dialyser’)
Note that there are two types of artificial kidney dialysis in clinical use: Hemodialysis uses a cellulose-membrane tube immersed in fluid, whereas peritoneal dialysis uses the lining of the patient’s abdominal cavity (peritoneum), as a dialysis membrane. This section … only describes the case of hemodialysis.
The “dialyser” part of a kidney dialysis machine consists of a large surface area of cellulose acetate membrane mechanically supported by a plastic structure. Blood is pumped past one side of this membrane while the dialysate fluid passes on the other side. The membrane may be folded-over many times so that the large area of the membrane occupies a practical volume of space.

Dialysate
The dialysate (solution) has the same solute concentrations as those in ordinary plasma. Therefore if the patient’s blood plasma contains excess concentrations of any solutes, these will move into the dialysate, and if the blood plasma lacks the ideal concentration of any solutes, these will move into the patient’s blood. Conversely, the dialysate fluid does not contain any waste products such as urea – so these substances in the patient’s blood move down the concentration gradient into the dialysate.

Anticoagulant
Heparin is the usual anticoagulant that is added to the patient’s blood as it enters the dialysis machine (in order to prevent the blood from clotting as it passes through the machine). Preventing the blood from clotting should, in turn, prevent any blood clots from blocking the filtration surface of the system. However, heparin is not added during the final hour of dialysis in order to enable the patient’s blood clotting activity to return to normal before he or she leaves.”

Finally, I went to the museum site itself for more information. You can find their site at https://www.nwkidney.org/about-us/dialysis-museum/. This important piece of information showed up there.

“It was 1960 when Dr. Belding Scribner and his colleagues at University of Washington developed the Scribner shunt, a device made of Teflon that could link an artery and a vein. This relatively simple device was revolutionary – it made long-term dialysis possible for the first time. Chronic kidney failure was no longer a death sentence.”

So now I know… and so do you. If I ever get out to Seattle again, this museum is on my list of places to visit.

Before I go, The American Kidney Fund asked me to let you know about two webinars this month, both on topics close to my heart… I mean my kidneys. They are Slowing down kidney disease on September 20th and Tips for talking with your doctor on Sept. 25th. Why not mark these on your calendar now while you’re thinking of it?

Until next week,

Keep living your life!

Let Your Voice Be Heard

Someone on a Facebook Chronic Kidney Disease Support Group Page asked how we can make others more aware of what CKD patients want. I’ve been tweeting (exchanging remarks on Twitter) with those who could answer this question just recently. How perfect was that?

The first thing the American Society of Nephrology requested is that those of you who are familiar with Twitter, or are willing to become familiar with this social media, join the monthly #AskASN twitter chats. To join Twitter you simply go to Twitter.com and sign yourself up, no special expertise necessary. That pound sign, or as it’s commonly known now – hashtag, before the words signify that this is a person or group with a Twitter account. What comes after the hashtag is your handle, the name you choose for yourself. Mine is – naturally – #SlowItDownCKD. You can search for me on Twitter.

#AskASN is one of the hashtags of the American Society of Nephrology, the ASN which you’ve often seen me quote. Yes, they are respected. Yes, they are doctors. And, yes, they do want to know what we as kidney disease patients want them to know about our lives as their patients. Big hint: their next Twitter Chat will be in late July.

This year’s May 28th blog was about KidneyX, the same topic as June’s Twitter Chat. Here’s a little reminder of what KidneyX stands for:

“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”

Did you notice that first principle: patient-centered? Or the fifth one: collaborative? We are included in that; we’re the patients.

IDEA Lab is one of the U.S. Department of Health and Human Services’ partners. This is how they define themselves:

“We test and validate solutions to solve challenging problems in the delivery of health and human services.”

And this is what they had to say during the KidneyX Twitter Chat:

HHS IDEA Lab‏Verified account @HHSIDEALabJun 19

Absolutely. Patients are innovators and we need to recognize that #askASN#KidneyX

Patients. They want to hear from us, patients.

Before reproducing a small part of the @AskASN KidneyX Twitter Chat, I want to introduce the players.

Kevin J. Fowler (@gratefull080504) is a patient who has had a preemptive kidney transplant and is highly involved in the patient voice being heard.

Tejas Patel (@GenNextMD) is a nephrologist with a large social media presence who advocates “for halting the progression of ckd so no dialysis or transplant [is necessary].”

James Myers (@kidneystories) is a fairly recent transplant with a strong advocacy for transplant patients.

I’m me; you already know me.

Now, the excerpt:

Thank you @GenNextMD Me too! #AskASNhttps://twitter.com/GenNextMD/status/1009245134964318209 …

Kevin J. Fowler added,

  • Tejas Patel @GenNextMD

Replying to @kidneystories

I am advocating for halting the progression of ckd so no dialysis or transplant #askasn #moonshot

Replying to @gratefull080504@GenNextMD

@GenNextMD That’s what those of us pre-dialysis want, too. The question is how do we do that? As a lay person, I’m at a loss here.

Replying to @Slowitdownckd@gratefull080504

Major undertaking by medical community, organizations (ASN, AAKP, NKF, RPA) and implementation of breakthrough therapies keeping patient central. Engaging all stakeholders will help prioritize what works for patients. Dialogue via formal & social media helps us understand better.

Replying to @GenNextMD@Slowitdownckd@gratefull080504

We recently had patient editorial in @CJASN by @gratefull080504 and interview https://www.kidneynews.org/kidney-news/features/patient-engagement … Lot of work needs to be done

I read the article. I think you should, too. Kevin makes the point that patient voices need to be heard and the nephrologist who was interviewed with him, Dr. Eleanor D. Lederer, agrees.

From reading my blog alone, you’re already familiar with the oft quoted American Society of Nephrology (ASN), American Association of Kidney Patients (AAKP) which was the subject of June 25th blog, and the National Kidney Foundation (NKF), a staple in the blog. But what is the RPA?

Let’s find out. It turns out that this is the Renal Physicians Association. Their website is at https://www.renalmd.org/. If you go there, you’ll notice four different choices. One of them is Advocacy. That’s the one I clicked. Keep in mind that this site is for physicians.

Become An Advocate for Excellence in Nephrology Practice

It is not only your right but also your obligation to let elected officials and policy makers know how you feel about important issues. It is your responsibility to speak out on matters that affect you directly or no one else will. RPA has developed pathways to allow you to do this.

Recognizing that nephrologists and their practice teams have limited time, an easy way to get involved in federal advocacy is by joining the RPA Political Action Committee (PAC) and Nephrology Coverage Advocacy Program (NCAP).

Take Action Nationally!

RPA’s Legislative Action Center (LAC) facilitates the important communication between RPA members and their members of Congress as well as representatives in their state legislatures. The LAC allows RPA members to track the progress of and search for all current legislation being considered by Congress.”

Our doctors are being asked to speak with the government on our behalf. But how will they know what we want or need, you ask. Easy enough: you tell them when you see them. You have regular appointments; that’s when you can talk with them about legislation you feel is necessary.

I never knew how much my opinion is wanted. I never knew how much YOUR opinion is wanted. Now we all know, so how about speaking out, raising your voice, and advocating for yourself. It’s not that scary if you start by just speaking with your doctor.  Although, I’ll be looking for you on ASN’s #askASN Twitter Chat in late July.

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!

Getting Juiced

I have the gentlest nephrologist in the world! Well, I think so anyway. He has been cautioning me about my weight for years. Yes, there it is again: my weight. Here I was finally coming to terms with being a chubby since nothing I was doing seemed to work to lose the weight. That’s when he tossed out a bombshell.

We all know that increased weight can raise your blood pressure which, in turn, negatively affects your kidneys. I was so pleased with myself for having raised my GFR another three points on my last blood test that I didn’t understand how I could be leaking protein into my urine at the same time. Wasn’t protein in the urine simply an indication that you have Chronic Kidney Disease? Didn’t I already know that? So why was protein leaking into my urine to the tune of 252 mg. when the norm was between 15-220 mg?

I know, I know: back up a bit. Thanks for the reminder. GFR is defined in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease this way:

“GFR: Glomerular filtration rate [if there is a lower case ‘e’ before the term, it means estimated glomerular filtration rate] which determines both the stage of kidney disease and how well the kidneys are functioning.”

Oh, and just in case you’ve forgotten, this excerpt from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 is a good reminder about the stages of CKD.

“Different stages require different treatment or no treatment at all.  There are five stages with the mid-level stage divided into two parts. The higher the stage, the worse your kidney function.

Think of the stages as a test with 100 being the highest score.  These are the stages and their treatments:

STAGE 1: (normal or high) – above 90 – usually requires watching, not treatment, although many people decide to make life style changes now: following a renal diet, exercising, lowering blood pressure, ceasing to smoke, etc.

 STAGE 2: (mild) – 60-89 – Same as for stage one

STAGE 3A: (moderate) – 45-59 – This is when you are usually referred to a nephrologist [Kidney specialist]. You’ll need a renal [Kidney] dietitian, too, since you need to be rigorous in avoiding more than certain amounts of protein, potassium, phosphorous, and sodium in your diet to slow down the deterioration of your kidneys. Each patient has different needs so there is no one diet.  The diet is based on your lab results.  Medications such as those for high blood pressure may be prescribed to help preserve your kidney function.

STAGE 3B: (moderate) – 30-44 – same as above, except the patient may experience symptoms.

STAGE 4:  (severe 15-29) – Here’s when dialysis may start. A kidney transplant may be necessary instead of dialysis [Artificial cleansing of your blood]. Your nephrologist will probably want to see you every three months and request labs before each visit.

STAGE 5: (End stage) – below 15 – Dialysis or transplant is necessary to continue living.

Many thanks to DaVita for refreshing my memory about each stage.”

Okay, back to the connection between spilling protein into your urine (called proteinuria) and CKD. This is from the recently published SlowItDownCKD 2016:

“In The Book of Blogs: Moderate Chronic Kidney Disease, Part 1, The National Institutes of Health helped me explain why this combination of excess weight and pre-diabetes was a problem for CKD patients:

‘High blood glucose and high blood pressure damage the kidneys’ filters. When the kidneys are damaged, proteins leak out of the kidneys into the urine. The urinary albumin test detects this loss of protein in the urine. Damaged kidneys do not do a good job of filtering out wastes and extra fluid. Wastes and fluid build up in your blood instead of leaving the body in urine.’”

Let’s say you don’t have pre-diabetes, but do have CKD. Does proteinuria still make it worse? Damn! It does. This explanation is from SlowItDownCKD 2015:

“The problem is that antibodies are made up of protein. Antibodies is defined by Dictionary.com at http://dictionary.reference.com/browse/antibodies as

‘A protein substance produced in the blood or tissues in response to a specific antigen, such as a bacterium or a toxin, that destroys or weakens bacteria and neutralizes organic poisons, thus forming the basis of immunity.’

Lose lots of protein into your urine and you’re losing some of your immunity. In other words, you’re open to infection.”

I guess that explains why I magically developed a UTI after years of not having any.

I have gone so far afield from what I intended to write about on this last Monday of National Kidney Month. What was that, you ask? It was my nephrologist’s strong suggestions for immediate weight loss: juicing. I was so surprised.

After all that writing about eating the raw vegetables for roughage and sticking to only three specified amount servings of each daily, this expert in his field was telling me to ignore all that and throw myself into juicing for the immediate future. But you can bet I’ll try it; no way I’m throwing nine years of keeping my kidneys healthier and healthier out the window.

I can’t tell you if it works since I only started yesterday, but I can tell you it doesn’t taste bad. I’m learning how to use this fancy, dancy blender we got three years ago that had just been sitting on the shelf. Experimenting with the consistency has caused a mess here and there, but oh well.

My first juicing experience included kale, celery, lemons, cucumbers, and ginger. I definitely need to play with my combinations. I also think I made far too much. Luckily Bear was in the house and shouted out that the machine was making that noise because I didn’t add enough water. Water? You’re supposed to add water?

I’ll keep you posted on these experiments if you’ll get yourself tested for CKD. It’s just a blood and urine test. Fair deal?

Until next week,

Keep living your life!

TED Doesn’t Talk to Me; But YouTube Does

After last week’s accolades for the blog about apps for kidney disease, I thought I would keep on the electronic trail and jump right over to one of the big boys: TED Talks. I was both excited and a bit apprehensive since this is new territory for me. I have heard some of my children talk about them, but never explored these talks for myself.

downloadWhat new information could I learn here? Would it be easier or harder to understand? And just what were T.E.D. Talks anyway?  Doing what I like to do best, I jumped in for a bit of research.

This is directly from the TED website at www.ted.com:

“TED is a nonpartisan nonprofit devoted to spreading ideas, usually in the form of short, powerful talks. TED began in 1984 as a conference where Technology, Entertainment and Design converged, and today covers almost all topics — from science to business to global issues — in more than 110 languages. Meanwhile, independently run TEDx events help share ideas in communities around the world.”

IMG_2982Considering what’s been going on with our insane politics this election, I thought I would check the meaning of nonpartisan just to make sure it had a meaning other than the one I’d been hearing bantered around. According to the Encarta Dictionary, it means “not belonging to, supporting, or biased in favor of a political party.” I wasn’t so sure that’s what it meant for TED, so I used the synonym function in Word; that made much more sense: impartial, unaligned, unbiased, unprejudiced, neutral, and so on.

Now that we know what TED is, let’s plunge right in and do some exploring. I searched Chronic Kidney Disease and got no hits. That’s all right; a synonym is renal disease. I’ll search that. All that came up was “Timothy Ihrig: What we can do to die well.” That’s not exactly what I was looking for.

I know, I’ll type in kidney failure. Hmmm, that didn’t work very well, either. I found two interesting talks, “Siddhartha Mukherjee: Soon we’ll cure diseases with a cell, not a pill” and “Anthony Atala: Printing a human kidney,” as well as two blogs that may have peripherally included CKD. No, these were not the talks about living with CKD that I’d hoped to find.

What other term could I search? I know, how about just-plain-kidney? I got three pages of hits which weren’t really hits at all if you were looking for living with Chronic Kidney Disease. While TED Talks cover a variety of interesting topics, I don’t think they’re CKD specific right now.  Maybe in the future…

I was a little crestfallen, but then I remembered that when I first decided to FullSizeRender (2)become a CKD Awareness Advocate and wrote What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I made a couple of YouTubes as marketing devices. They were terrible, but did include some helpful information. You can see this for yourself at https://www.youtube.com/watch?v=8VcVYhhrixg and https://www.youtube.com/watch?v=nRsUNxv7ajA.

When you’ve picked yourself up from the floor after getting your belly laughs at my expense (cringe), start exploring YouTube for CKD information by looking at the side bar on each of my woebegone entries into the world of YouTube.  The list of videos continues and goes on and on. Yay!

FullSizeRender (3)

Of course, just as when you’re looking online – or choosing a book – or a blog to follow, you need to be careful to separate the wheat from the chaff. There are charlatans and scammers here, just as there are respected physicians and patients bravely sharing their stories.

But what is YouTube anyway? https://www.youtube.com/yt/about/tells us:

“Launched in May 2005, YouTube allows billions of people to discover, watch and share originally-created videos. YouTube provides a forum for people to youtubeconnect, inform, and inspire others across the globe and acts as a distribution platform for original content creators and advertisers large and small.

YouTube is a Google company.”

You’ll also find some YouTubes I posted that show friends, family, even me dancing either the Blues or East Coast Swing. My point? Anyone can post anything provided it does not include:

Nudity or sexual content

Violent or graphic content

Hateful content

Spam, misleading metadata, and scams

Harmful or dangerous content

Copyright (Me, here, this refers to copyrighted material.)

Threats

You can read more about these community guidelines at https://www.youtube.com/yt/policyandsafety/communityguidelines.html.

I chose one or two posts to see the quality we can find here. (Very funny, no, this is not a case of I- wouldn’t-want-to-be-a-member-of-any-club- that-lets-me-in.) I noticed one of the physicians I’d had contact with as an advocate, Dr. Robert Provenzano, posted about the causes of CKD on 2/3/09 at https://www.youtube.com/watch?v=CjZCKBOoeQo which was highly informative… but getting close to seven years old.

I wanted something more recent and found it at https://www.youtube.com/watch?v=n1_srNUJkjE. This one by Danuta Trzebinska, MD, of US San Diego Health, deals with possible symptoms of CKD and was posted last year.

But then I found YouTube about a kidney cleanses which could be harmful to already damaged kidneys. Dr. Josh Axe at https://www.youtube.com/watch?v=3AqPE-j3Eq0 was not particularly targeting CKD patients, but as a new CKD patient, how could you know that? Some of the herbs he suggests are harmful to ALREADY COMPROMISED kidneys. You need to be careful about which videos are for those with CKD and which are for those without CKD. Of course, you’re IMG_2980checking everything you see with your nephrologist before you act on it. Right? You are, aren’t you? You’ve got to protect your kidneys, so please (Let’s make that pretty please.) do.

I’m wondering what other electronic helps I could explore. We’ve looked at apps, TED Talks, and YouTube. What other electronic aids do you know about that I don’t? I’ll be more than happy to explore them for myself which means I’ll be exploring them for you, too, since they’re going to end up being the next blog.

halloweenwitchvintageimagegraphicsfairyToday is Halloween. You know those treats? Why not treat yourself by not eating them? It’s hard, but it can be done.

Until next week,

Keep living your life!

Be Inspired

Wow!  Both Mother’s Day and Mother’s Day have slipped by.  I hope all of you had a wonderful time with your mother, father, chosen mother, chosen father, surrogate mother, surrogate father and/or whoever fills the role for you. I hope you had laughter, tears, hugs and kisses – or, at least, a really firm handshake for those who are not demonstrative.

Please be aware that if one of your biological parents has CKD, you are at higher risk for the disease. AND if you are the biological parent, so are your children.

That made me so angry when it was explained to me. Of course, I had no clue why I was angry – but it is said that anger is the flip side of sadness. I have children.

Hmmm, have you considered giving a copy of What Is It And How Did I Get It? Early Stage Chronic Kidney Disease to either your parent or your child as a late Mother’s or Father’s Day gift?  What about as a graduation gift to the aspiring medical student? Now that’s inspiration.

Wait!  I have to repeat this: Dr. Jamal Atalla is such a gentleman that he said nothing when I misspelled his name in last week’s blog.  My apologies and thank you for your kindness in not mentioning it, Jamal. I was actually meeting with Tamara Jensen from AKDHC when I realized I’d misspelled his name and stopped mid-sentence to make a mental note to mention this in the blog.

Many people choose to share a meal out to celebrate holidays.  Bear’s daughters, Lara and Kelly, and Kellly’s significant other – Sean – took us to Cracker Barrel for breakfast to celebrate.  [I noticed the bracelet part of medical alert bracelets being sold as interchangeable watch bands  at the cashier’s counter. Apparently, they are the same things.  A little too fancy for my taste, but worth checking out.] My daughters, Nima and Abby, were in New York having lunch out  with their father.

And, yes, I was able to find something on the menu that fit the renal diet I follow.  Naturally, I did get those “Are you sure?” questions from the friendly waiter when I asked there be no butter, syrup, sweetened fruit, or powdered sugar on top of my made-from-scratch French toast and just black coffee and water with lemon but no ice.  I’m used to my diet now and thoroughly enjoyed it as much as the others enjoyed their bacon, sausage, and whatever else they had. Have I inspired you to eat out safely for your CKD?

Some readers were surprised to discover that I’d seen my nutritionist not once, but twice. My nephrology center, AKDHC, includes a yearly consultation with a nutritionist.  Now that I’m older and on Medicare, I decided to see what they cover.  Surprise!  Three visits, the first year and two every year thereafter.  This is from their website. 

 

Medical Nutrition Therapy

How often is it covered?

Medicare covers medical nutrition therapy services prescribed by a doctor for people with diabetes or kidney disease. This benefit includes:

  • An initial assessment of nutrition and lifestyle assessment
  • Nutrition counseling
  • Information regarding managing lifestyle factors that affect diet
  • Follow-up visits to monitor progress managing diet

Medicare covers 3 hours of one-on-one counseling services the first year, and 2 hours each year after that. If your condition, treatment, or diagnosis changes, you may be able to get more hours of treatment with a doctor’s referral. A doctor must prescribe these services and renew their referral yearly if you need treatment into another calendar year. These services can be given by a registered dietitian or Medicare-approved nutrition professional.

This is the address at which you can find the rest of this article and others that may be of interest to you.  http://www.medicare.gov/navigation/manage-your-health/preventive-services/medical-nutrition-therapy.aspx?AspxAutoDetectCookieSupport=1  Hopefully, this has inspired you to call your nephrologist for a visit with the practice’s nutritionist.

Let’s move from using renal nutrition therapy to stave off End Stage Renal Disease to alternatives should you reach stage 5.  What if you’re among the 20% of CKDers who aren’t able to stabilize at stage 3 and need to go on to dialysis?

This article from the University of Washington caught my eye a couple of months ago. Frankly, I had trouble believing this was even possible. It just sounded too much like science fiction. After pondering and pondering, I’m now convinced it is more science than fiction. I’d be interested to hear your opinion.

Wearable artificial kidney to be tested for safety and effectiveness in collaboration with FDA

By Leila Gray and Linda Sellers

UW Health Sciences/UW Medicine and Northwest Kidney Centers

A wearable artificial kidney, designed as a new treatment for kidney failure, will be tested in Seattle. The trial will be done in collaboration with the Food and Drug Administration under a new Innovations Pathway announced Monday.

The battery-powered wearable artificial kidney in its current form weighs about 10 pounds and is worn in a belt around the waist. Dr. Victor Gura, an associate clinical professor at the David Geffen School of Medicine, University of California, Los Angeles, invented the device. His goal is to free end-stage kidney disease patients from being tethered for several hours for three or more days a week to a dialysis machine. The hope is to improve the quality of life of these patients.

Researchers will be testing a wearable device that takes over the blood-cleaning functions of the kidneys…. The Wearable Artificial Kidney is being developed by Blood Purification Technologies Inc. based in Beverly Hills, Calif..

“Quality of life issues will likely be embedded in the trial design,” Himmelfarb said. “We’ll probably be asking patients, ‘Can you move with ease? How do you feel? How does the device or the treatment affect your daily life? Can you go to work with it on or go out with your family and friends?’ We will be looking at key health outcomes as well as health economics.”

“At present, if you want to attend your cousin’s wedding in New York City, you need to check to be sure time slots are available at a center for you to get your dialysis done. You can’t just walk in,” he said. “If you live in a rural area, you probably drive a long distance every week for your dialysis sessions. A safe, effective, wearable artificial kidney would give end-stage kidney disease patients much more freedom in their lives.”

You can find the entire article at: http://www.washington.edu/news/articles/wearable-artificial-kidney-to-be-tested-for-safety-and-effectiveness-in-collaboration-with-fda

So we’ve gone from renal nutritional therapy to external artificial kidneys in just one blog.  I am so inspired to realize just how much is available to us.

Nathaniel Smalley, former East Coast Swing venue owner and now professional photographer, has initiated a Facebook page for nature and wildlife photography (https://www.facebook.com/#!/groups/NaturePhotographyWildlifePhotography/permalink/321242084623998/?notif_t=like). The professionals there (I’m one of the non-professionals) called this photograph inspiring, so look at it and realize Chronic Kidney Disease is not necessarily a death sentence. 

Until next week,

Keep living your life!

Pollyanna Lives… In An Artifical Kidney

It’s amazing how long a week can be sometimes.  This week felt longer because I was not careful about overdoing, overdid, and spent two days in bed (well, that part of it was great: DVDs, books, phone conversations, a little internet).  I’ve learned my lesson… I think.  I have this vague recollection of saying the same thing July 4th weekend when we went up to Prescott for the rodeo and parade but ended up in the hotel room pandering to my neglient energy level instead.  Okay, maybe this time I really have learned my lesson – at least, until next time. Some lessons are hard to learn, but I’m hopeful.  Hmmmm, have I mentioned my kids refer to me as Pollyanna?

Talking about Pollyanna, I found this article in Renal And Urology News and started hopping up and down with excitement – while trying to stay seated at the computer. I’m not exactly a kid and am distressed at the thought of having my children disrupt their lives – if they’re even matches – when and if I need a kidney.  My brothers and my finance are all older than I am and, logically although sadly, might not be around at that time.  So who will donate their live kidney to me should the need arise?  If not a living donor, won’t I be placed on the list to wait… and wait… and wait?  Maybe not.  Here’s hope:

Nephrologists and Urologists Collaborate  on Implantable Artificial Kidney

 
                    Figure 1. An implantable artificial kidney moves closer to reality.
Figure 1. An implantable artificial kidney moves closer to reality.
 
 

Four years ago, a joint effort was established between nephrologists and urologists at the Cleveland Clinic Glickman Urological and Kidney Institute to develop and implant a bioartificial kidney. The bioartificial kidney uses a high-efficiency biomimetic silicon nanopore filter that acts synonymously as a glomerulus, in combination with a kidney epithelial cell bioreactor that allows for reabsorbtion of essential electrolytes from plasma filtrate (Figure 1). A Phase 2 trial of an extracorporeal system utilizing these technologies was completed in 2005. Current efforts have been aimed at miniaturization of technology to facilitate implantation of a miniaturized biohybrid device.

This project has been funded by the National Institute of Biomedical Imaging and Bioengineering, the Wildwood Foundation, Cleveland Clinic, and the University of California, San Francisco. Nephrologists and engineers  involved with inception and initial development of the project include William H. Fissell, MD (Cleveland Clinic), Aaron J. Fleischman, PhD, (Cleveland Clinic), Shuvo Roy, PhD (University of California, San Francisco) and H. David Humes, MD (University of Michigan). At Cleveland Clinic, Dr. Fissell, a clinical nephrologist, has teamed with Matthew N. Simmons, MD, PhD, a urologic oncologist to develop prototypes suitable for surgical implantation.  Dr Fissell has a background in biomedical engineering and oversees design and construction of the components of the device. Together, Drs. Fissell and Simmons work through the processes of design modification, surgical implantation, in vivo device maintenance, and functional monitoring. To date they have implanted four hemofilter devices, the last of which remained in vivo for five days.

This project is a model example of the advantages of direct partnership between nephrology and urology colleagues. Dr. Fissell and colleagues provide expertise in terms of materials engineering and renal physiology to develop a device capable of reproducing kidney function.  In partnership with Dr. Simmons and the urology team, they are steadily advancing the transformation of the device from concept to an implantable reality. It is hoped that the success of this research may eventually impact the lives of millions of patients with kidney disease.

You can find the article at: http://www.renalandurologynews.com/nephrologists-and-urologists-collaborate-on-implantable-artificial-kidney/article/216193/

On the book front, there’s another book signing coming up. Here’s the “official” notice”:

Gail Rae, author of “What Is It And How Did I Get It? Early Stage Chronic Kidney Disease” signs the book while the radio shows she’s guested on play in the background.  Not only are the books for sale, but Next has terrific goodies and – of course – coffee for sale. That’s at Next Coffee Company 19420 N. 59 Ave. Glendale, Az. 85308 on Saturday, Dec. 17 at 2.  Locals, come join me!!!!  This is my hangout place when I need to get away from the computer and out of the office so you know one of my two cups of coffee a day is drunk here — and it’s so good.  They have food, too, even rice krispies treats which you know we can eat.

I am excited about having a book signing right in my own backyard so to speak.  It’s not the now transformed Muddy Cup in Staten Island where I used to hang out while Ingrid Michaelson (yes, THAT Ingrid Michaelson) waitressed, but it’s welcoming and you just might meet an interesting medical student since Midwestern University is right across the avenue.  I’ll be looking for you then.

Oh, I’ve got the link to the last radio show I guested on, the one with the heavy hitters full of information I hadn’t heard about before:  http://www.voiceamerica.com/episode/57739/what-is-your-ckd-experience-with-gail-rae-and-a-medical-breakthrough-with-asea-how-redox-signaling

Until next week,

 Keep living your life!

 

Break-throughs!

Steve Weed of The Transplant Community Outreach on Facebook brought this to my attention.  He’s one of the many people who popped up out of nowhere to offer help when he discovered I was writing a book on early stage Chronic Kidney Disease.  This is the second time I get to thank Steve publicly for all the information he’s shared with me.  Thanks, Steve!

“Medical Breakthrough With A Tiny Device

It could change the way doctors treat diabetes, kidney problems and more. Dr. McGeorge shows you why a tiny device is attracting worldwide attention!”

http://www.clickondetroit.

com/video/27437224/

index.html

While I cannot reproduce the video in this blog – who knew that my year old laptop didn’t have the capacity to do this? – I urge you to watch it for yourself. It deals with a stem cell soaked device (if I understood correctly) which will be available in about ten years.  The beauty of it is that this device can provide your  body with some of the services your diseased kidneys would have.  Watch for yourself to gain a better understanding of just what exactly is being researched.

As soon as I finished viewing the video, I found the following info posted by TRexx Maus, the Director of Facebook’s The Transplant Community Outreach. By the way, I write “Kidney Matters,” a short update each Tuesday for them just in case you’d like to take a look.

Scottish scientists grow kidneys in lab

Sunday, April 10th, 2011

Scottish scientists have made a breakthrough in organ transplantation by successfully growing kidneys in a laboratory.

The development could help tackle the tragic shortage of organs for transplant, reports the Scotsman.

Researchers at the University of Edinburgh created the organs by manipulating stem cells – early cells that are the building blocks of the body – to form the structure of a kidney.

They then managed to create kidneys that measure just half a centimetre in length – the same size as a kidney in a foetus, which they hope will be able to grow to maturity after being transplanted into patients’ bodies.

The kidneys were grown in the laboratory using a combination of cells from amniotic fluid – the fluid that surrounds all babies in the womb – and animal foetal cells.

The technique holds out the prospect of scientists being able to collect amniotic fluid at birth to be stored until needed at a later date if a patient develops kidney disease.

The patient’s own amniotic fluid cells can then be used as the base for creating a new kidney.

Using the patient’s own cells will, in theory, also end the problem of rejection that arises when an organ from a deceased donor is used.

The Edinburgh researchers are at the forefront of a global attempt to use stem cells culled from amniotic fluid to create new human kidneys.

The study will be presented at the Edinburgh Science Festival later this month.

DisclaimerBioscholar is not intended to provide medical advice, diagnosis or treatment. The articles are based on peer reviewed research, and discoveries/products mentioned in the articles may not be approved by the regulatory bodies.
The link for this article and others of interest to people with Chonic Kidney Disease is:
I don’t know about you, but I’m seriously hopeful after reading about these breakthroughs!
Until Friday,
keep living your life.
Published in: on April 12, 2011 at 11:12 am  Leave a Comment