If you’re looking for information about being a kidney donor, a very useful resource launched last week from Living Donation California. Everything you need to know about becoming a kidney donor is presented in a well-organized and easy to understand format. There are over a half-dozen educational videos plus living donor stories, tips on how to start your donation process, the risks involved, post-surgical recovery, insurance, a survey which helps you evaluate your eligibility to donate, and links to California transplant centers and National donor resources.
Author Archives: Neil
A new drug provides a glimmer of hope for those of us with PKD: The Otsuka Pharmaceutical Co. announced on April 12, 2013 that the U.S. Food and Drug Administration (FDA) has accepted their new drug application for the potential use of tolvaptan in the treatment of autosomal dominant polycystic kidney disease (ADPKD), the disease I inherited from my father.
A New England Journal of Medicine study reports that tolvaptan slows the enlargement of cystic kidneys while also slowing the loss of kidney function–both by about 50%. The FDA’s target action date for Otsuka’s tolvaptan application is September 1, 2013. If approved, tolvaptan would become the first pharmaceutical therapy for patients with ADPKD.
In Australia, “the cost of dialysis to society over giving someone a kidney transplant is about $80,000 a year,” says Transplant Australia chief executive officer Chris Thomas. In a bid to ease the financial burdens on transplant donor-patients, to lower the extra costs, and to shorten the Australian wait lists for life-saving organ transplant surgery, Australian Federal Health Minister Tanya Plibersek recently announced a radical pilot program which will offer living organ donors a six-week “wage”. The amount isn’t large (approximately $3600 US$) but it is hoped the measure will improve chances for the roughly one-thousand Australians waiting for a new kidney while relying on dialysis to survive. Continue reading
I need a living kidney donor and say so publicly, and I get a lot of comments here on my blog articles–as well as personal messages on my Facebook Page–from people around the world offering to sell me a kidney. While I genuinely appreciate their willingness, buying kidneys is illegal in this country. Mt Sinai, my transplant center here in NYC, would have to bump me from the nationwide registry program. Who among you with a young family can take that sort of risk? Hence, I need an altruistic donor.
But curious to know more about the black market for kidneys, searching Google led me to Havocscope, where the reported average paid by kidney buyers worldwide is $150,000. US buyers reportedly pay less–$120,000. Continue reading
My kidney function has crossed the border of stage 4 to stage 5, aka end-stage kidney failure. Last year my GFr (common measure of kidney function) fell from 50 to about 12, whereas it took 14 years for me to drift from 70 to 50. My situation is now urgent with the wait list for a non-living donor 4–7 years.
Because I am in end-stage kidney failure, I urgently need a living kidney donor. If you have type A or O blood, we may be a direct match, but it doesn’t matter if we’re a direct match or not–read on. Continue reading
It works. . . strangers donating a kidney to other strangers through an organ donation registry.
In this instance, five donors and recipients were all in the same area–Des Moines, Iowa. My congratulations to them all.
The local media lit up on January 11th and 12th with coverage of Iowa’s longest ever kidney transplant chain: Video of one of the press conferences is at WOI-DT, the local ABC affiliate. WHO TV, the NBC affiliate, and at KTLA TV also covered the story, and you can read coverage in the Cedar Valley Courier and the Des Moines Register.
On Saturday, USA Today picked it up, adding background information and a national context.
I’m really excited about the prospects of this medical research study turning into a viable alternative for the life-long anti-rejection medications that have potentially serious lasting long-term side effects for organ recipients–maybe even me.
Kidney transplants involve a donor who agrees to donate one of their kidneys. In a relatively new approach aimed at reducing organ rejection, living donors in a clinical trial at Northwestern University Medical Center are also asked to also donate part of their immune system.
Kidney transplant doctors were in the news during the last week of November, twice.
In the wake of winning the 2012 Lasker Award, Sir Roy Calne was asked in a NY Times article about early attitudes towards organ transplantation. “It didn’t exist!” Dr. Calne replies. “While a medical student, I recall being presented with a young patient with kidney failure. I was told to make him as comfortable as possible because he would die in two weeks. This troubled me.”
According to this article in the New York Times, a recent proposal from the kidney transplantation committee of the United Network for Organ Sharing (UNOS) would change how kidneys from deceased donors would be allotted to waiting transplant candidates (including me):
Central to the plan is a new index for better estimating the quality of the more than 14,000 kidneys recovered from dead donors each year. The top 20 percent of kidneys, as measured by the index, would be directed to those candidates expected to live the longest after a transplant — typically younger patients.
The conferring of the Nobel Prize in Economic Science has brought well-deserved publicity to Alvin Roth of Harvard for his work on market design which among other applications includes the software that powers chains of matched pairs between those who undertake life-giving donations of a kidney with those who are in desperate need of them. The massive effort, dedication and technical expertise of carrying out these exchanges is truly awesome. Continue reading
What? That’s right.
In the last month there have been a number of newspaper articles and television news stories about this. On September 20, 2012 the New York Times said that during 2011 “2,644 of the 14,784 kidneys recovered were discarded, or nearly 18 percent, according to the United Network for Organ Sharing.”
Back from a late-summer hiatus with a few photos from my daughter’s Sweet 16 party earlier in September:
This was a wonderful day, one I’ll hold onto for the rest of my life, filled with such love and joy. There was a tornado that day here in Brooklyn; miraculously kids from as far away as Philly arrived safe and sound. We included a slide show of key events and people in my daughter’s life.
Their mission is helping transplant and catastrophic injury patents raise funds in their own local communities to help pay medical expenses not covered by insurance–including certain donor costs. HelpHOPELive, a non-profit organization near Radnor, Pennsylvania, works to establish successful grass-roots fundraising campaigns for individuals and families who are facing a transplant or who have sustained a catastrophic injuries. Once a funding application (and demonstration of financial need) are made and accepted, any money raised is sent to HelpHOPELive where it is held in a patient–dedicated “Restricted Fund” and then disbursed as needed.
The supply of viable kidney donations continues to lag the steadily rising demand (4%-6% per year), and medical researchers are hard at work trying to change this dynamic. Among many different studies of kidney disease and transplantation, researchers around the country are looking at ways to decrease rejection rates and increase the length of time a kidney can be in limbo before transplantation. At NYPH/Columbia, one recently announced study at their Department of Transplantation is investigating a drug called 15NP to see if it helps kidney recipients with high rejection risk when their donor is older, or if the time between donation and implantation is greater than 24 hours. Continue reading
Guided by his faith, David Koster donated a kidney 10 years ago. After speaking with my wife, Laura, he wrote the following passage specifically for my site. His story is engaging, speaks from the heart and has a happy ending.
TO SAVE A LIFE!
There are events that take place in a persons life that are so significant and so meaningful that they have an effect on you for as long as you may live. Those of you who are married and have children can surely relate to this. By the grace of HaShem I had an experience that was so beautiful, so magnificent, so wonderful that my life will never be the same. I gave one of my kidneys to a total stranger. Continue reading