Sunday, May 26, 2013

Making Chains of Life

From New York Times, February 19, 2012, by Kevin Black

60 Lives, 30 Kidneys, All Linked

... Chain 124, as it was labeled by the nonprofit National Kidney Registry, required lock-step coordination over four months among 17 hospitals in 11 states. It was born of innovations in computer matching, surgical technique and organ shipping, as well as the determination of a Long Island businessman named Garet Hil, who was inspired by his own daughter’s illness to supercharge the notion of “paying it forward.”...

The National Kidney Registry provides a way to make matches between those making a donation of a kidney and those who need a kidney.  It has help facilitate over 710 transplants and has an active donor pool of 334.  At their website simply choose your situation: donor or in need.  Register today.


Donate a Life

From Middletown Patch, CT

Middletown Woman Donates Kidney to Husband With No Hesitation

Colleen Alleyne turned out to be a match for a kidney donation for her husband, Michael, who for years suffered from polycystic kidney disease and also is a diabetic.

But there was a stumbling block: Colleen, 46, was told she needed to lose 20 pounds. Although she had been working out steadily prior to learning this, the weight was not coming off easily. 


From MapleRidgeNews, British Columbia, Canada
At a one-year reunion to mark his life-changing kidney transplant, Phil Rosario announced he and his wife Keesha will  begin work for people who suffer from the same disease.
At the top of their list will be lobbying for a national organ donor registry, because presently matching of donors with those needing transplants is done only on a provincial basis. Last year, doctors told Phil he could be in for a nine-year wait to get a new kidney.
Keesha said a suitable donor could be available in another province, and health officials here wouldn’t know it.
“For anyone who needs an organ, that’s ridiculous.”
Phil’s transplant got a lot of media attention last year because a complete stranger – a Washington State mayor – came forward as a donor, after a chance meeting.




From Fox 6 News, Milwaukee, Wisconsin

Man who took out billboard still looking for a kidney donor

Jeff Nelson continues to search for a perfect match in his quest to find a kidney donor. Back in March, FOX6 News profiled Nelson, after he took out a billboard seeking a donor in the Menomonee Valley.
Nelson has polycystic kidney disease. Today, his kidneys are the size of two NFL footballs, filled with thousands if not millions of cysts.
“My kidney function is down to 11%,” Nelson said.



Living with PKD

From The Star, United Kingdom

Star’s organ drive is halfway there

The Star’s campaign to sign up 12,000 new organ donors from South Yorkshire and Derbyshire has recruited more than 7,600 lifesavers since its launch in January.
Transplant survivor Dave Horner - whose wife Karina gave him one of her kidneys as he suffered with polycystic kidney disease - said the news was ‘absolutely amazing’.
The 44-year-old added: “It’s great news because it means more people can have the second chance that I have had.”


From PKD Foundation, New Jersey Chapter
New Jersey Chapter Facebook Page


From Miami Herald, Florida
Prep recruiting pioneer Larry Blustein honored for four decades of work, fight against disease

After 40-plus years of promoting athletes from every walk of life, the script flipped for Florida high school football guru Larry Blustein at The Miami Herald’s All-Broward Athletic Awards on Friday.
Bluestein, who went public with his ongoing battle with kidney disease for the first time earlier this year, was given a standing ovation after receiving the Leo Suarez/Walter Krietsch Courage Award at the Signature Grand in Davie.

Read more here: http://www.miamiherald.com/2013/05/25/3415380/prep-recruiting-pioneer-larry.html#storylink=cpy


Read more here: http://www.miamiherald.com/2013/05/25/3415380/prep-recruiting-pioneer-larry.html#storylink=cpy


From YouTube.com
PKD and Health Insurance


From DailyStrength.org, PKD Support Group
Home UTI Test Kits


From DailyStrength.org, PKD Support Group
Discussion about Tolvaptan

At my nephrologists appointment yesterday he told me about Tolvaptan. Here is a summary of what he said: 
• 
Avoid use of Samsca in patients with underlying liver 
disease, including cirrhosis, 
because the ability to recover from liver injury 
may be impaired ... extensive discussion follows...




For Doctors

From Harvard School of Medicine

6th Annual Symposium on Polycystic Kidney Disease

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