Community Run Dialysis – Inspirational!


Reblogged. Something to seriously consider even here in the US. We have sonething close. It’s called Dialyspa. Their idea is that the patients come first. Patients over Profits? I wrote anout them in “Dialysis and Dialyspa” in my blog at http://www.DevonTexas.com

Big D and Me

Over the last week, I’ve been working on a new project that involved making a list of all the dialysis units in Australia (more on that soon). In the process, I discovered that all units are either public (free via Medicare) or private (fee charging), except one, which is owned and run by dialysis patients and their families.

Run by patients and families? What the…?

Of course, I had to know more, so I contacted them and discovered firstly that they’ve been around a while and I’m a bit late to this party. But that made finding them even more heartwarming and inspiring.

This community run dialysis service follows a very different model. It is focussed not just on dialysis, but also on the community, on keeping people together. Imagine a place where family and community, culture and country are integral to a happy and fulfilling life. Where people live…

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Dialysis and Phosphorus, Again


I came across this posting from The National Kidney Foundation about controlling phosphorus and I have to share it.  I especially appreciate that they cover ways to read the ingredients label and include a list of items you CAN eat that are lower in phosphorus.

Also, I like that they make the point about natural versus added phosphorus.  Our bodies don’t absorb the as much of phosphorus that is naturally in the food like that in meat or plants. However, phosphorus that is added for whatever reason (usually as a preservative) is 100% absorbed and more quickly than naturally occurring phosphorus.

Phosphorus control is the bane of my existence.  Potassium I can avoid but phosphorus, I can’t seem to overcome. I know other dialysis patients have a problem with it. So take heart and read the article “How To Be A Phosphorus Detective” at the link below. Let me know if you find this helpful.

https://www.kidney.org/newsletter/how-to-be-phosphorous-detective

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#Dialysis and #Hope for #Kidney Patients – update


A few months ago, I posted the first part of this under the title, “Dialysis and Hope for #Kidney Patients” .  There are some promising developments and even more exciting things to come.  Here is an update…

I recently attended a conference hosted by the American Society of Nephrology which gathered nephrologists, researchers, professors, dialysis providers (Davita and Fresenius), hardware manufactures and engineers, and patients together for two solid days of discussion.  The coolest part about this were the breakout sessions during which we brainstormed about taking dialysis out of the box.  We discussed some other approaches that are currently in development such as the implanted artificial kidney, the wearable kidney, kidney regeneration, kidneys grown using stem cells, but we also opened up other methods to perform dialysis without needles.  Yes, all this very theoretical and “pie in the sky” at the moment but it shows some promise. At some point in the future, we won’t have to rely on traditional methods of dialysis.

One point made by a speaker was that twenty years ago we said, “Twenty years from now…” and it is twenty years from now. So, where are we? Unfortunately, nothing tangible is on the market.  The hope is that the next time we say, “Twenty years from now…”, we won’t be looking back on no significant developments in dialysis.

The more immediate future

I figure the track of development will be more progress on the wearable kidney while the research and development in some very promising areas continues,  There are some massive hurdles to leap between now and coming out with these.

The Kidney Project

The Implanted Kidney

The next layer of development is the implanted kidney.  There is some very promising work in this field.  From Nephrology News and Issues: “Implantable artificial kidney project making progress”.  This is a mechanical kidney that reproduces the function of a real kidney and is powered by the blood flow from the heart in a manner similar to the real kidneys. It uses nanotechnology microchips to mimic the filtering performed by the kidneys,  The chips determine the “good” from the “bad” and send the bad cells along with the excess fluid into the urinary system to be removed from the body.  The developer, William H. Fissell IV, MD, says he has, “a long list of dialysis patients eager to join a future human trial.  Pilot studies of the silicon filters could start in patients by the end of 2017.”  For more information about this, see “The Kidney Project”

Kidney Regeneration

Another approach to improve the lives of kidney patients is to revive kidneys damaged by disease, or regeneration.  Fortunately the kidney is an organ that responds well to regeneration. From Harvard University, here’s a posting titled, “The Kidney Repair Shop” (a cute title for some very serious work). In this case, they are using stem cells to cause the tubules which are responsible for filtering in the kidney to regenerate.

stem cells in kidney regeneration

As you can see from the picture above, this is no small task.  The stems cells from a neonatal source (such as the umbilical cord of a recently born child) are combined with cells from the patient’s kidney to cause the kidney to repair itself.  Cool, eh?  However, this method requires a huge amount of research into how the cells interact and complex experimentation to mimic this process in the kidney.

3-D Printing a Kidney

There is some really exciting work being done that prints a kidney using a slush of materials and a 3-D printer to create a functioning kidney that can be implanted into a patient.  From Gizmodo.com:

samples of human kidney cells are cultured in large volumes and blended with hydrogel, a water- and nutrition-rich material that makes up the 3D printed kidneys’ base. Afterwards, the printed cells can survive for up to four months in a lab thanks to this gel’s rich nutrient source.

You can read more about this in the article titled: “Scientists Can Now 3-D Print Transplantable, Living Kidneys”.

So, as you can see, there are very exciting developments going on in the kidney world.  I’m excited anyway.  In the meantime, I will continue my transplant efforts and hope that something miraculous comes along soon.  Perhaps not in my lifetime but in yours.

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#Dialysis and Hope for #Kidney Patients


wearable kidneyUpdate 10/5/16:  Some disappointing news via Kidney Buzz about the “wearable kidney” and it being delayed by a lack of funding.  Read it here at Kidney Buzz. 

From the National Kidney Foundation’s Kidney Advocacy Committee program…

“There is some much going on in the kidney world. Out here in San Fransisco at UCSF Dr. Roy is in phase 2 of the artificial kidney, where no immunosuppressive drugs will be needed and no matching. This will be a game changer and clinical trails may start as soon as 2017/2018. You can follow their work on Facebook on “The Kidney Project” page. I spoke with Dr Roy and this work gives me such hope that we can reduce or remove the transplant wait list. We are not talking science fiction far off in to the future either. “

This is a HUGE step forward for us.

I found this link for the Kidney Project that may be a better description of the work Dr. Roy is doing.  It is fascinating.  Also, here is Dr. Roy’s profile and description of his academic works.

Meanwhile there is ongoing work nationwide on a kidney created using your cells and stem cells to “grow” a kidney for you exclusively.  Again, no anti-rejection drugs would be needed because it is “your” kidney.

SEE the other related post, “Dialysis and Hope for Kidney Patients – Update”

DevonTexas

Posted in dialysis, ESRD, kidney, kidney research, thoughts | Tagged , , , , , , , , | 2 Comments

Dialysis and Cooking


downloadHey all!  I need to share this article about cooking for dialysis patients.  Read it carefully and I hope you find it as interesting as I do.  I’m inspired by the fact the study involved supports all the findings with facts.

 

 

From Renal and Urology News, “Cooking Methods May Help Dialysis Patient Control Phosphorus”  Please thank them for publishing this study.  dominic.barone@haymarketmedical.com

 

2016 DevonTexas

Posted in calcium, cooking. cookbook, diabetes, diet, dietary restictions, Kidney Diet, phosphorus, potassium, recipes, sodium | Tagged , , , , , , | Leave a comment

#Dialysis and Social Media


NKF !My friend, Jim Myers, was a guest of the National Kidney Foundation and their Advocacy in Action Blog on the topic: “Why We Need to Be Active on Social Media”.   He makes some very good points about the effective use of social media to advance several aspects of kidney disease.  You can read his post here.

By the way, sign up for the newsletters from the The National Kidney Fund.   There’s a sign-up box near the bottom of the screen, on the right.   Just below that you also can sign-up for various other newsletters or CLICK on THIS.

No group does more for kidney patients of all types (CKD, ESRD, Transplant, etc.) than the National Kidney Foundation.  Their annual walks raise money and, more importantly, raise awareness.  They also host annual informational meetings in several metropolitan areas in the spring and early summer months.

Visit the NKF website and take a look around.  Remember, the more informed you are, the better you are.  Dealing with kidney disease is not easy when you don’t understand what’s going on.

© 2016 DevonTexas

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Dialysis and Kidney Transplant II


Here’s a YUGE development in organ transplant!

NEW LIVING ORGAN DONATION COLLABORATION ANNOUNCED AT WHITE HOUSE ORGAN SUMMIT

From the National Kidney Foundation website…

“The White House annouced a new collaboration with Johns Hopkins University and Novartis to nationally launch the Live Donor Champion Program.  Developed by transplant surgeon Dr. Dorry Segev at Johns Hopkins University, the Live Donor Champion Program aims to overcome common barriers to finding a living kidney donor—a need for more education about living donation; and a reluctance to start a conversation about donation among transplant candidates.”

There are over one hundred thousand patients seeking new kidneys and four thousand died in 2015 while waiting for a new kidney.  Only 1 in 5 of those 100k waiting will receive a kidney.  Getting living persons to donate a kidney increases the number available for transplant and living kidneys are better for transplant, too!

Read the news release here through the National Kidney Foundation page… 

2016 DevonTexas

Posted in activism, ESRD, kidney, kidney donation, lobbying, National Kidney Foundation. NKF, Transplant | Tagged , , , , , , , | 1 Comment