Perhaps it is the firm resolve of the New Year, or some planetary alignment, or just our world’s really good fortune: All around me lately have been people asking questions about how to become an anonymous living organ donor. Last Friday, in fact, I received emails from two different people who found this blog, telling me they were considering giving a liver or kidney to a stranger and wondering where they would begin such a process. Just an example of how my own organ gift continues to give back to me… I get the distinct pleasure of conversing with these amazing people, and being awed and inspired by them! (Thank you, M. and L.)
My answer to both of them, and to anyone considering an anonymous gift of life, is to contact the nearest transplant center that conducts living donor transplants, and ask to speak to a donor care coordinator about living donation. (The Greatest Gift Foundation can point you to the appropriate center nearest you if you email us a request.)
As another first step, check out the marvelous Web site hosted by the United Network for Organ Sharing (UNOS, the national governing body for transplantation in the U.S.), called Transplant Living. It has a whole section on Living Donation, and, within that, a full section on “Being a Living Donor” that includes pages with titles like “First Steps,” “Making the Decision,” “What Makes a Good Donor,” “Risks,” and “Tests Involved.” It also offers PDF listings of all the U.S. transplant centers that perform living donor transplants.
Beyond that, as you conduct your search for additional information, here are some things to keep in mind:
- Anonymous organ donation is sometimes called “non-directed donation,” “non-direct donation,” “Good Samaritan donation,” or “altruistic donation.” (That last one kind of bugs me. What are the rest of us, who know our recipients — non-altruistic? I beg to differ!) These make good Google search terms – type in any of them with the name of your state and you’re likely to find some decent, relevant results.
- Not every transplant center will perform transplants from anonymous donors. Doing so takes money, time, talent, adaptation of policy, and administrative and legal work that even some of the best transplant centers cannot afford to invest. To find out, just call the center and ask. (Even if they don’t accept anonymous donations, they may point you to someone nearby who does.)
- Anonymous living donor liver transplants are relatively rare. Kidney transplants from anonymous live donors are much more common. This is mostly because kidney tranplants far outnumber liver transplants (and the waiting list is similarly far greater for kidneys than for livers); kidney transplantation is a more advanced science and has a more advanced infrastructure than liver transplantation does. It also is influenced by the fact that kidney donors can be back to full activity within a matter of days, while liver donors typically require two months or more of recovery before they can resume normal activity.
- The most common concern I have heard from people who are considering anonymous donation is that they could not donate an organ as a living donor again in the future, say, if a family member or friend needed a kidney or liver. This is true. People can donate only one kidney; they need the other one to live. And although the liver regrows to full size after you donate a portion of it, anatomically, it is impossible to donate a piece of your liver a second time. Meanwhile, no transplant center that I know of will accept a liver from a living donor who has already given a kidney, or vice versa.
- Anonymous donors are sometimes the first spark in a chain reaction, in which the loved one of the recipient will anonymously donate to another stranger, whose loved one will in turn donate, and on and on as the gift keeps giving. (This is sometimes referred to as “Daisy Chain” donation.) It’s the “pay it forward” phenomenon in action. There’s a great article about it here and a great video here.
We stand at the ready to help answer further questions and point potential anonymous donors toward other resources online.
The generosity of live organ donors is wonderful. It’s a shame we need so many live organ donors. Americans bury or cremate 20,000 transplantable organs every year.
There is another good way to put a big dent in the organ shortage — if you don’t agree to donate your organs when you die, then you go to the back of the waiting list if you ever need an organ to live.
Giving organs first to organ donors will convince more people to register as organ donors. It will also make the organ allocation system fairer. About 50% of the organs transplanted in the United States go to people who haven’t agreed to donate their own organs when they die.
Anyone who wants to donate their organs to others who have agreed to donate theirs can join LifeSharers. LifeSharers is a non-profit network of organ donors who agree to offer their organs first to other organ donors when they die. Membership is free at http://www.lifesharers.org or by calling 1-888-ORGAN88. There is no age limit, parents can enroll their minor children, and no one is excluded due to any pre-existing medical condition.
UK sample of non-directed donation http://www.livingkindneydonation.co.uk – appears she is undergoing evaluation now.
Sue
sorry I did a typo in that web address, it should be http://www.livingkidneydonation.co.uk … not kindney!
Sue Jaymes
I am interested in becoming a non-directed living liver donor to someone and I was just wondering if you could tell me what I should do to get started in that and if there are any liver transplant programs in utah that don’t require you to be 18 years old. thanks!
Hi i was just talking to my husband about the great prospect of live donation. And i decided to google it. Your website is what i found. I am interested in doing a live donation. I am 24. A+ blood type, blood donor. Ive got all my organs that i know of lol. I’ve always put checked yes for donor, for when i pass away. But (i know this may sound wierd) ive been watching old episodes of doogie howser md (tell me you know what im talking about), and ive found myself crying every episode, because of ppl who are in need medically(i know the show is fake but it feels so real). Im not using my other kidney, ive tried to donate it once, to my stepdad, when he lost one to cancer but he refused to take it from his daughter. I live near topeka ks and i was wondering where i would go to find a willing transplant center. I would be very willing to help someone else live a full healty life, everyone deserves a second chance. Carpe diem
Im also at the “first steps” of this proccess. i know i want to do it with out a doubt but need a little help knowing what to do and who to talk to… any input would be awsome thanks!
I would like to help someone with a liver donation but I do not know anyone in need. I live in Minnesota but can travel and I am looking for a center tha does non-directed liver transplants. Thank you,Paul
I saw your post and although it is from a couple years ago was wondering if you did donate? What happened? If not, do you still want to? I have a friend who desperately needs a live liver transplant but doesn’t have a donor? Any info would be greatly appreciated. Thanks, Jeanie
Jeanie, I was a donor for my brother in 2006, which is what spawned me to create the Greatest Gift Foundation as a way to improve the experience of living donors across the country. (My story is on the “about me” tab.) I hope your friend finds a donor; start with his or her transplant center, however, because not every center allows non-related living donors in the first place. If his or her center does, then you can spread a wide net — the television media is a good place to begin.
hey I am sixteen years old and I was just wondering if anyone knows of anywhere that will take a non-directed living liver donor who is under 18 years old? thanks
Hi….my name is Nik and I am from India. I have donated my part liver 5 years ago since he needed a liver transplant.Unfortunately,he lived for 4.5 years after the transplant and is now no more.
Today I have heard of a small girl the age of 6 years, who also has last stage liver cancer and her poor parents exhausted their funds over her medication. It is sad to see those helpless parents not able to do anything, and I was wondering if I could be a donor for a second time. It would be paradise for that family.
Please guide me.
Regards
Nik
Becky,
A friend of an acquaintance of mine needs a liver transplant. I heard about this and, being a blood type match for him, decided I would volunteer part of my liver. After the initial tests it turned out my liver was too small to donate to an adult.
Upon consideration and under the “pay-it-forward” line of thinking, I offered to donate to a child. My offer was accepted and a bit less than 5 weeks ago, I had the operation.
All of this simply to say that, for me anyway, nearly full recovery was a bit more than 3 weeks; I just completed my first full week of work. Granted, I still am not allowed to lift more than 10 pounds and am a tiny bit sore around the site of the incision. BUT anyone who, like me, works a desk-job, and who is generally fit and in good health might expect similarly good and quick recovery results.
I hope this information helps others make the decision to donate.
Thanks,
M.