Chopped Liver - A Community for Live Organ Donors and Recipients

Thursday, November 29, 2007

Doctors and kidneys and parties, oh my!

Lots of stuff to tell you about these days, starting with a huge thanks to David at the Minnesota American Liver Foundation for giving me the opportunity to speak for a couple of minutes in front of a few dozen hepatologists and other liver-related physicians at an event for the American Association for the Study of Liver Disease. It went well, and a few of the docs stopped by afterwards to take my card, ask me more, and make helpful suggestions. Russ Wiesner, a prominent gastroenerologist and past president of UNOS, challenged me on the issue of paying organ donors. (Initially, I think, he misunderstood the Greatest Gift Foundation's mission and thought that I was promoting the idea of paid donation, which is categorically not so. At a minimum, we agreed that health care coverage for donors would be a reasonable step to take.) But it was fun having the debate with him and learning more about his insights on the best solutions to the organ shortage, which appear to be more about changing the structure and politics of the UNOS system than about reaching potential donors, living or dead.

Cara Mastrey, the sister of rock DJ Tawn Mastrey, introduced herself to say she too is launching a foundation in memory of her sister, who passed away in October, a casualty of hepatitis C and the infuriating lack of available donor organs.

But still, the highlight of the night for me may have been my conversation with a nurse who ushered me into the hallway to talk about her grand neice, who needs an organ, and her struggles with the decision of whether to be tested to donate in case she was needed. I learned something new about myself and my foundation after that conversation. The fundraising, the public speaking, the PR -- it's not that I'm not good at them or don't enjoy them -- it's just that what really energizes me is the actual service, making the connections and digging in to support people who are going through this. It's the work that pumps the energy through my veins. I can't wait to get started.

Oh, and the Jingle Jangle is cooking, and we can't wait to see as many of you as possible at the big event!

Wednesday, November 21, 2007

Minnesota Public Radio Show Today on Payment for Donations

Yers truly joined the (disconcerting) conversation today on Minnesota Public Radio's Mid Morning show, featuring two prominent transplant physicians and leaders on why they are promoting a pay-for-organ solution to the kidney shortage in the U.S. I have tremendous concerns that this is going way too far given that we haven't even managed to support the living donors with basic emotional and economic support to see how that works. I called in, and was hoping for the chance for a little more give and take than I got, but no matter what any of us think of the conversation, it was a delight that it is being had!

You can listen at http://minnesota.publicradio.org/display/web/2007/11/21/midmorning1/.

Thursday, November 15, 2007

A powerful story from B.C.

Well, wow. Lisa from The Tyee in British Columbia, Canada, wrote to let me know about this beautifully written essay in yesterday's paper, by staff writer Linda Solomon, who considered donating a kidney for her brother. She eloquently captures the emotion that both potential donor and potential candidate go through -- the anxiety, the guilt, the fear, the pressure, the hope. For those of you who are interested in healing ceremonies, there's a bit about that as well. But you don't need to be invested in organ donation to find it simply a touching and powerful read. Highly recommend you check it out.

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