Caution: The situation concerning kidney disease, transplants, and live or cadaver donation keeps changing, so no website — including this one — can be relied on for up-to-date information. Thus, if you wish to find out the latest information about any aspect of this, you are advised to call the kidney transplant center nearest to you.
My Mass General Transplant Information
In my case, I am listed at Massachusetts General Hospital in Boston, one of the major transplant sites.
Anyone interested in becoming a living kidney donor on my behalf, or getting more information about it, should read about the three-part evaluation process here. This link is specifically for donors:
Alternatively, one may call the donor program at:
877-644-2860 or 617-643-7193
to inquire or to initiate an evaluation.
General information about the MGH Adult Kidney Transplant Program and about Living Donor Kidney Transplant Programs is in these two places:
Paired Kidney Donation
An important recent development helping to alleviate slightly the shortage of kidneys for transplants is the "paired kidney exchange." If a potential donor is not a perfect match for an intended recipient, they may get listed on an exchange so that when another recipient matches the first donor, and the second recipient has a donor that would match the first recipient, they can swap donors and both receive kidneys. Mass General Hospital (where I am listed) does work with exchange programs, and any interested donor for me should contact Mass General (info above) for details.
The National Kidney Registry (NKR)manages a nation-wide kidney exchange program:
About the NKR:
Here is a good article for potential Living Donors, from the National Kidney Registry:
To sign up either as a potential living kidney donor or patient, do not try to sign up through their website. It is better to contact the transplant center you are interested in, either by phone or email. Contact information for MGH, where I am listed, is above.
For more informative documents about Paired Kidney Donation, see the documents listed under the Living Kidney Donors Network in the next section of this page.
More Kidney Information Websites
There are many websites with information about kidney disease and transplant, some that seem to be kept more up-to-date than others. One of the best, in my experience, is the Living Kidney Donors Network (LKDN), founded by Harvey Mysel, who established the LKDN after recognizing the need for better resources while pursuing a successful living kidney transplant in 2006. Unlike MGH (mentioned above), or UNOS, and NKR (listed below), LKDN is a private website and not connected with any "official" organization. You can find much basic information by sticking with their website and the links they provide: http://livingkidneydonorsnetwork.org/index.html
These are some of the pages listed under the heading "For Living Donors" on the menu on the LKDN Home Page:
Here is a link to the LKDN WEBINAR, with many useful documents in pdf form: http://livingkidneydonorsnetwork.org/webinar/video/index.html
Follow the link and click on the name of a document you want to read to download a pdf file.
LKDN also has an excellent set of FAQs at http://livingkidneydonorsnetwork.org/faqs.html including the following:
United Network for Organ Sharing (UNOS) is the private, non-profit organization that manages the nation's organ transplant system under contract with the federal government. They have many useful articles on Transplantation, Donation, Policy, Data, etc., for Patients, Professionals, and possible Donors:
The Forward Newspaper had an interesting editorial suggesting ways to encourage more living kidney donations:
I have prepared a flyer for posting on bulletin boards (coffee shops, laundromats, supermarkets, etc.) inviting people to view this website and learn about my situation. I have also printed some business cards with links to this website as well. I am happy to send some to anyone who wants.
Two flyers are printed on a letter-size piece of paper, If you want to print your own and cut them in half for posting, click here for a PDF of my flyer.
Donor Success Stories
One Non-Directed Donor's Story
Anyone beginning to think about kidney donation should read this story. Here is an excerpt:
"One thing that I had not anticipated was the deep emotional and spiritual impact all this had on me. I found that I could describe to others what the procedure had been like, but would choke up and be close to tears when I tried to express what it meant to me... I guess I was sort of overwhelmed by all that had happened: the enormity of giving life to another through donation, the wonderful expressions of professional and personal care I had received, the sufferings of so many other folks in the hospital, the relief that I had actually survived the whole thing, and (I suppose) the left-over effects of so much anesthesia and medication. Anyway, I don’t know how common such emotions might be among donors but don’t be surprised or frightened if it happens to you. You’re doing a tremendous thing, and it’s liable to effect you deeply."
You can read the full story here:
More from the Living Donors Online website:
From LKDN website:
From Penn Transplant Institute:
From UCDavis Health System:
From University of Maryland Medical Center:
In the left hand column, under Patient Stories, click on any of the links below 'Kidney Recipients and Donors'.
From the American Transplant Foundation:
74-year-old gets kidney transplant:
Many other success stories can be found on the web.