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Posts Tagged ‘Donor resources’

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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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 have Minnesota Public Radio and my linked-in mother both to thank for alerting me today to the passionate actions of Robert Redford’s son, James Redford, in promoting transplant awareness.  Seems his story is everywhere lately — he’s a liver transplant recipient, non-profit founder, and, like his father, a filmmaker, and one of the many things he’s done in support of the cause was a film called “Flow,” “a touching depiction of an encounter between a donor family member and a recipient.”  So cool.

[Side note: if you thought blogging about Pope Benedict attracted traffic to my humble little blog, just imagine what the name “Robert Redford” could do to get people here! (Robert Redford! Robert Redford!)]

At Jamie’s Web site for the James Redford Institute for Transplant Awareness, one of the features I noted with interest is a section called “Connect with Others.”  He offers links to three resources chat group resources, which I’ll check out and, if they seem to be active and relevant, I’ll add to my links at left.  Meanwhile I’ll try writing to Jamie to see if he can add the Greatest Gift Foundation‘s living donor registry project to his list, as well as Nelson Freytes’ terrific Transplant Cafe site, which is growing larger and more active by the day.  

As you may already know, one of the major activites of the Greatest Gift Foundation will be to connect would-be and past donors one-on-one for networking and conversation.  We’re already actively doing this today. If it’s something we can help you with, of if you’re interested in joining our roster of donors who are willing to connect with others, let us know by dropping us an email

Meanwhile, I’m thrilled to see Jamie Redford contributing to the cause with his star power and talents.  That’s a sun I’m eager to dance in.

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Update on my previous post about the cute little plush kidneys and livers at I Heart Guts.  As I knew I had to do, destiny being what it is, I bought the “I’m a liver not a fighter” T-shirt.  Happy to report that the order was superbly delivered and quickly, hand-addressed in Sharpie with a little cartoon drawing waving hi to me, and with the added surprise of a little gut sticker.  (Random, doubtless.  I got the heart. Aw.)

So, yes readers, consider them recommended. 

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Hey, America. It’s Liver Life Walk time!  One foot in front of the other at an easy pace, chatting with old friends and new ones and drinking free coffee, for just three miles or less, and voila!  More people are aware of liver disease and the prominence of it, and the American Liver Foundation has more money to do its fabulous work. 

If you’re a potential living donor of a liver, this is a great way to show your support for the people out there who need transplants and might not be so lucky.  Trust me — it’s also a great place to tell your story and get some support for yourself from that same community.

There are at least 13 regional walks going on in cities throughout the country, from California to Maryland.  Go to http://www.liverfoundation.org/walk to find the location and date of the walk nearest you (hint — click the large “find a walk near you” button to do this). 

Lest our kidney and bone marrow friends get jealous of the fun group exercise and comeraderie, fear not! You can learn about annual National Kidney Foundation’s walks around the country at http://www.kidney.org/news/kidneywalk/.  I don’t know if the National Marrow Donor Program has a walk program, but they do schedule events throughout the year — full schedule is here.

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One of the most promising new online resourcses I’ve seen for the transplant community is the Transplant Cafe, launched by the endlessly energetic and charming Nelson Freytes, who received a liver transplant in 1998.  Built on Ning.com, it’s like a self-contained version of Facebook — you can sign up for free and have your own page, you can link to “friends” who are also signed up, and you can leave messages (private or posted for public view) for people.  Nelson does a great job of giving everyone personal welcomes and drawing his cafe community’s attention to specific people who especially need thoughts and prayers or special recognition at any given time.  This is a welcome example of social networking being used well to connect people who need each other’s friendship and support.  Today there are 304 members, many of whom are prospective or past living donors, and it’s growing quickly.

I’ve got a page of my own, and I set up a group called “living organ donors” that anyone can join.  You can also chat with other members about the upcoming Transplant Games in Pittsburgh (look out world, my brother’s going to dominate in single’s table tennis!) and join or create groups on several other topics. 

Among the people you’ll find there, you’ll see a page for an optimistic and heroic guy named Ryan Egnaczyk, a 24-year-old Philadelphian who donated part of his liver for his young cousin, Michelle, who tragically did not make it for more than a few days past the surgery.   You’ll find Tom Simon, a vocal and kind FBI special agent who made headlines when he donated his kidney to a stranger he found via the controversial Matchingdonors.com — you can also find him on the public speaking circuit and at his personal blog, http://www.kidneychronicles.com.   You’ll find Becca Ketter, a mom who donated part of her liver to her then 17-month-old baby girl.  And that’s less than 1% of the stories you’ll find there.  

Hope to see you at the Cafe! 

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