A mathematical approach to kidney donor chains

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!

Read Full Post »

Another domino transplant chain first: 12 patients, 3 states

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.

Read Full Post »

Thinking of living organ donation to a stranger? Your first steps…

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.

Read Full Post »

One big happy organ swap in NYC

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.

Read Full Post »

Diary of a donor, Diary of a recipient

Not sure which I think is cooler:  That living kidney donor Tammy Steele and her kidney recipient, friend Carolyne Bryant, both kept diaries to document their experiences and were willing to open those diaries up to the public; or that the Tacoma News Tribune was willing to excerpt those diaries in the pages of their newspaper late last month. 

Either way, donors and recipients alike can benefit from hearing part of their story, if only in building our confidence in knowing that we are not alone as we encounter the fears, frustrations, and emotions of this journey.  I’m a little late in posting about it, because the story ran in the May 28 edition, but it’s still available online in the paper’s archives.

As a writer myself, I can’t imagine having gone through my living donation without dumping my thoughts down on paper (or on my old blog).  The value then was highly therapeutic.  The value now, even more immense.  I have a record to look back on that reminds me of my thoughts and feelings, that brings me back emotionally to the highs and keeps the lows feeling real.   It’s worth it!  Not sure where to start? If I remember correctly from when I was eight, the words “Dear Diary…” often do the trick!

 

Read Full Post »