Archive for January, 2009

A potential non-directed donor (someone considering donating an organ anonymously to whomever needs it) wrote to the Greatest Gift Foundation with a question that stumped me.  And yet it’s a logical question — I’m surprised I haven’t heard it before. He was thinking that before or during his approach to become a living donor, he might want to consult an attorney, if nothing else to make sure he has things like his will and life insurance in order.  He wondered if I knew anyone who specializes in this sort of thing.  A great question from someone who is clearly thinking logically and planning ahead.

I am not aware of anyone who specializes in legal work specifically for living donors (non-directed or otherwise).  If there are, my gut says it might be more to deal with complications (i.e. breaches of anonymity, lawsuits related to the procedure, etc.), and not for general housekeeping like wills and insurance.  Anyone out there among my readers who knows or thinks differently?  Email me or comment if you have ideas I can share here. 

In the absence of that (or any knowledge on my part about legal stuff) I would suggest asking around, perhaps calling your local Organ Procurement Organization (OPO) or the transplant center donor care coordinator, or maybe your local chapter of the National Kidney Foundation.  Explain that you’re considering becoming a non-directed living donor, and they’ll likely be glad to take your call and point you in the right direction. 

This potential donor raises a good point worth mentioning to those of you who are thinking about donating.  Life insurance, health insurance, wills, living wills, and simple housekeeping like talking to your family about your wishes if you found yourself in a crisis are all important things to consider in advance of any planned health event of this magnitude.  The words “Last Will and Testament” sound dreary and dramatic, but it’s really not a big deal if you’ve never done it before.  And it’s nice to know it’s there, should it be needed for this or any reason.

Eager for any additional thoughts from readers in the know…


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Happy T-Day, Joe!

Joe and Me, so happy!

Joe and Me, so happy!

Joe,  today I honor your heart, your resiliency, your mind, your patience, your achievements, your humor, and every day — every single, precious day — of your life since our transplant three years ago.  And at the same time I thank the world for giving me the awesome, life-defining honor of being your donor, your sister, and your lifelong friend. 

Happy T-Day, Joe. I love you!

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My vote for company of the month is Charley’s Grilled Subs, which in January is donating 10 cents from every sandwich sold to the National Kidney Foundation.  The nationwide Ohio-based chain is doing this in honor of Marcus Gilbert, a Charley’s franchisee who donated his kidney to one of his 16-year-old employees, Juan Delgado.  (You can read their story here.) Charley’s has more than 350 locations in 39 states and 12 countries.  Find one near you at their Web site, and contact the national franchise headquarters to say thanks here.

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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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Sigh. There is so much hurt in the world — people suffering on organ waiting lists, people suffering from anger and resentment, people who are not at peace with themselves, their world, their gifts. Dr. Richard Batista, irritated by four years of divorce proceedings following his wife’s extramarital affair, is telling her now that he wants his kidney back, the one he donated to her a couple of years before she began the affair. Of course, in lieu of the kidney, he’s willing to take $1.5 million.

In his photo, he looks so incredibly sad. My heart goes out to anyone in pain, but he does not have my empathy on this one.  He admits, according to the article I’ve linked to above, that part of his motive in donating his kidney to his wife was to save their then-already-struggling marriage.  (Anyone else out there think maybe this current press war he’s starting isn’t really about the kidney????)

Point for the day, and a good piece of wisdom for future living donors to heed:  When we living donors give this greatest gift, we should be giving it freely. No strings. No conditions. It is a gift, not an IOU or an obligation.  We should not go into it with motive, or see our gifts as giving us some kind of permanent upper hand in our relationship with our recipient. 

For Dr. Batista and his wife, I pray for peace, especially that all too rare inner kind.

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