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Posts Tagged ‘Altruistic donation’

This terrific and thoughtful blog post is WAAAAY over my non-math-oriented head, but I enjoyed reading it … so I’m sure any of you who are more mathematically inclined will enjoy it even more.

The blogger writes about a married couple — mathemetician Sommer Gentry and Johns Hopkins transplant surgeon Dorry Segey — who were principal researchers in a paper about how a mathematic algorithm might be applied to pairing thousands of potential donors with thousands of potential kidney recipients in a giant, graceful swap.  The paper they wrote suggests that such a mathematical solution could be a major part of the solution to the organ shortage for kidney recipients, provided it is paired with the appropriate controls to protect social justice and other sociological issues.  (At least, I think that’s what it said! :))

Wow.  This idea might be worth cracking out my old algebra book to understand better!

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Score another achievement for kidney paired donation (or daisy chain transplants, or domino transplants, as they are sometimes called). Johns Hopkins in Baltimore joined Barnes-Jewish Hospital in St. Louis and Integris Baptist Medical Center in Oklahoma City for a 12-patient, six-transplant cross-country kidney chain.

An anonymous altruistic living donor began the chain, and a paitent on the UNOS waiting list for a kidney was the last link. According to the Johns Hopkins news release, all six donors and all six recipients are recovering.

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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.

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I’m in a somewhat fragile state, wearing my heart on my sleeve and getting emotional when I see happy transplant stories in the news these days.  (My brother Joe, the recipient of my liver in 2006, has been hospitalized three times in the past six weeks, owing to an unrelenting stricture in his duct at the point of surgical connection from his transplant.  The docs have inserted a subcutaneous line to help him with drainage from his liver, a contraption he’ll likely have to wear for months while the stricture stretches back out to normal dilation. )

So it is with the most ebullient pleasure that I look to this wonderful story on the Kidney Foundation’s Web site, about Mohammad Islam’s gift of his kidney to young Evan Hubbard.  Mohammad gave his gift as part of a kidney donor chain.  His wife had received a kidney from a total stranger, so he agreed to give his to someone for whom he was a match — which became Evan.  Evan’s father Paul, not a match for his son, agreed to keep the pay-forward chain going, and in turn donated his organ to a stranger with whom he was a match, Leroy Baker.

I love the idea of these donation chains, not only because they put on display our very human desire to give back to the universe for the gifts we have been given, but also because they speak to our selflessness as humans.  I could end this post here.  Paul, Muhammed, and Evan’s story is simply beautiful and loaded with hope.

But I am awestruck and inspired by more than just the “pay it forward” angle in this story.  Based on his name, I presume that Mohammad is Muslim, which I mention only because of the following thought.  In almost three years of following living donors in the news, this is the first time I’ve ever seen a story about a living donor in the U.S. who is Muslim.  And, maybe it’s just my personal need for beauty amid my grief right now, or my post-election “high on hope,” but I am bouyed by this reminder that, no matter how many differences we have with the people around us — religion, race, gender, geographies, values, politics — we have so much in common as humans. 

In Africa, there is a marvelous concept of “ubuntu,” literally “me we,” which is bestowed to those people who become their fullest selves through their connections to other people — among people who are marked with kindness, selflessness, approachability, and compassion. 

Hindus and Buddhists use the word “namasté” to say, in one form of meaning, “I honor the place in you in which the entire Universe dwells, I honor the place in you which is of Love, of Integrity, of Wisdom and of Peace. When you are in that place in you, and I am in that place in me, we are One.”

I don’t know what term, if any, Islam might use to refer to this idea of human connectedness, our humanity as one people.  But I did find this nice page that describes from one Muslim professor’s point of view the presence of humanity at the center of prophecy, for Islam and all religions.

As we ponder the grief and suffering of our loved ones who suffer from organ disease, as we consider our own opportunities to be selfless as living donors, as we encounter differences in the people around us, may we all see above all the commonalities that bind us as humans.  To Paul, Mohammad, and all living donors who either gave to a loved one, payed it forward in a donation chain, or just altruistically chose to give to a stranger, I bow to the ubuntu in all of you. Your grace and humanity lifts my spirits and fills me with awe.

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I found a nice quote of unknown origin online today:  “Life is an echo.  What you send out comes back.”  It’s reminiscent of the less elegant saying “what goes around comes around,” or the Mother Goose-y idiom “one good turn deserves another.”  All worthy (but probably woefully inadequate) ways of putting into mere words the glorious sentiment that eight people are feeling today at New York-Presbyterian Hospital Columbia, which just conducted a four-way kidney swap, the state’s largest in history. 

Good samaritan Anthony DeGiulio got the idea to donate a kidney altruistically after watching a TV program.  His kidney went to a stranger to him named Barbara, whose husband had wanted to offer his own kidney but wasn’t a match for her.  But the husband was a match for someone else who was needing a kidney, a young woman he’d never met named Alina, whose father had been willing to give her his kidney but wasn’t a match.  The father was a match for a guy named Andrew, though…  and the swap went on, ultimately involving 50 clinicians at once and saving the lives of four and connecting the souls of all eight forever.

An article in the New York Daily News yesterday wrapped up with these three great paragraphs, the last of which features a comment by the gracious man who sparked the chain in motion, Anthony.  It’s a quote that sounds to me much more lovely (and much more personal) than any of the ones at the top of this post.

The [donor organ] swaps, also known as paired exchanges, have been responsible for 373 kidney transplants in the U.S., the United Network for Organ Sharing said.

Doctors at Johns Hopkins University performed a six-way exchange in April. They believe that a national registry of living kidney donors – including those willing to donate to strangers – could result in 6,000 transplants a year.

Some of his friends and family thought DeGiulio was “nuts” to donate his kidney, he said. “I wish it was more common,” he noted. “I sacrificed three days of my life, and this woman gets her life back. If I could feel like this every day, I’d do it any day of the week.”

My thanks to Tom Simon, who called my attention to this event and who serves as a shining source of inspiration to good samaritan donors like Anthony, his three “swap mates,” and the thousands of altruistic donors who give the gift of life so freely strangers in need.

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Laynee SchneiderToday’s post is in praise of altruism: In Yakima, Washington, 9-year-old ray of sunshine Laynee Schneider is going to get the kidney she needs because strangers are lining up to volunteer to be her living donor.  A story from Sunday’s Yakima Herald Republic reports that 21 people requested paperwork to become a potential donor for Laynee, only seven or eight of whom were family and friends.  Said little Laynee, “I don’t know these people, but I still think they’re nice and kind.”  So wise at just 9!

Anonymous donation, sometimes also called “non-directed” living donation because the donor is not “directing” his or her organ go to any certain individual, is becoming increasingly common.  UNOS reports that there was one anonymous kidney donation in the United States in 1988, compared to 97 of them in 2007.   

Back when I was blogging about my own living donor transplant in 2006, I came face to face with anonymous living donation when an inspiring young man named Mike emailed me out of the blue from London, Ontario.  He had seen a news report about a baby girl who was dying of biliary artesia, had a rare blood type,and needed a liver.  He was the right blood type (and, of course, he had a liver).  More than 600 people contacted the news station to find out whether they might be suitable to donate; he became the donor.  Mike and I wrote to each other often throughout his ordeal, and eventually met and continue to chat ongoing.  He doesn’t see what he did as at all heroic.  Just the right thing to do.  Later, a young mother of a child with the same disease wrote to me to say that an anonymous donor had surfaced to save her child’s life, and that she was feeling guilty and conflicted about the overwhelming generosity.  Her suspicion is understandable given the mindset that the average American might have about living donation for a total stranger: “Most normal people would not do it.” (That’s a quote from a living donor and a donor advocate at Virginia Mason hospital, from the Yakima Herald story.)  I introduced her to Mike and they had a long conference call with her family so they could better understand his motivation.  The exercise was therapeutic for both of them!

In any case, some normal people do become living donors for total strangers.  I love those people.  Laynee has it right. They are nice and kind to the extreme.

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