Links and Resources

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.

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:

http://www.massgeneral.org/transplant/services/living_donor_kidney_evaluation.aspx

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:

http://www.massgeneral.org/transplant/services/adult-kidney-transplant-program.aspx

and

http://www.massgeneral.org/transplant/services/treatmentprograms.aspx?id=1179.

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:
http://www.kidneyregistry.org/

About the NKR:
http://www.kidneyregistry.org/kidney_recipients.php#why_nkr

Here is a good article for potential Living Donors, from the National Kidney Registry:
http://www.kidneyregistry.org/living_donors.php

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.

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:

  • What is it really like to be a donor?
  • An Overview of Living Kidney Donation
  • Benefits of Living Kidney Donation
  • Who can be a Living Kidney Donor and How are They Evaluated?
  • The Surgical Procedure
  • The Risks of Donating

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.

  • Some of the most helpful documents:
  • Kidney Paired Donation
  • Matching Recipient & Donors
  • How To Increase the Number of Kidney Transplants
  • The Kidney Paired Donation (KPD) Conundrum

LKDN also has an excellent set of FAQs at http://livingkidneydonorsnetwork.org/faqs.html including the following:

  1. Who can donate?
  2. How will I know if I am suitable to donate?
  3. Do I need to be related to the person who may receive the kidney?
  4. Are there any risks to the donor?
  5. Are there any long-term risks?
  6. Will I have to change my lifestyle after donating?
  7. Will donating my kidney affect a future pregnancy or fathering a child?
  8. Will I be covered by my health insurance?
  9. What if I live in a different part of the county from the person I am donating to?
  10. How long does the donor assessment process take?
  11. How much time will I need to take off work?
  12. How long will I be in hospital?
  13. Will I need to take any medication after donating?
  14. What about follow-up?
  15. Do some donors have trouble making the decision?
  16. Can I speak to somebody who has donated?
  17. What if I decide that being a donor isnít for me?

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:
https://www.unos.org/donation/

The Forward Newspaper had an interesting editorial suggesting ways to encourage more living kidney donations:
http://forward.com/opinion/editorial/306610/how-to-make-kidney-donors-whole/

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.

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:
http://www.livingdonorsonline.org/experiences/fatherpat.htm

More from the Living Donors Online website:
http://www.livingdonorsonline.org/experiences/experiences.htm

From LKDN website:
http://www.lkdn.org/success_stories.html

From Penn Transplant Institute:
http://www.pennmedicine.org/transplant/patient-care/transplant-programs/kidney-transplant/patient-stories/

From UCDavis Health System:
http://www.ucdmc.ucdavis.edu/transplant/video/stories.html

From University of Maryland Medical Center:
http://umm.edu/programs/transplant/health/patient-stories/kidney-recipients-and-donors
In the left hand column, under Patient Stories, click on any of the links below 'Kidney Recipients and Donors'.

From the American Transplant Foundation:
http://www.americantransplantfoundation.org/about-transplant/living-donation/true-stories/

74-year-old gets kidney transplant:
http://lkdn.org/birmingham_church/index.html

Many other success stories can be found on the web.