Email from Nancy Reeves to our Last Word file:
I was delighted to hear your show on "The Gift of Life" today. It was just about two years ago that I listened to my 16 year old daughter agree to become a fourth generation organ donor. As I heard her answer the question posed to her by the Bureau of Motor Vehicles employee I thought back to my grandparents, the first generation of organ donors in our family. Their cremated remains are intermingled beneath a blue spruce in the corner of the yard on the Nebraska farm where I grew up. Perhaps more accurately, what is scattered there is what was left of their bodies after all the useful parts were shared to sustain life, to improve the quality of life, to educate physicians about the diseases they died from, or to train physicians-to-be in the intricacy of human anatomy. Their physical remains were well used. I expect their spirits were smiling as their great granddaughter answered, "yes," she too, wanted to be an organ donor.
Unfortunately, I only had the opportunity to listen to snippets of the show as I jumped in and out of the car while retrieving our cat up from the vet, where he spent the weekend. He was staying there, keeping out of mischief, while we attended a conference in Chicago on Primary Sclerosing Cholangitis (pronounced: primary sklur-o-sing ko-lan-jit-is). My daughter, the fourth generation organ donor, was diagnosed a month and a half ago, at age 18, with primary sclerosing cholangitis, a progressive disorder of the bile ducts that will slowly destroy her liver. Paraphrasing a friend of mine, the "good" news is that at least a liver transplant is a long term treatment for PSC. God does have a wicked sense of irony sometimes.
As someone who has been acutely aware of the critical need for organs for years I would have been delighted to hear organ donation discussed anytime. Given our much more personal connection to the need for donated organs, I am even more grateful than usual for this discussion. With enough publicity, perhaps by the time my daughter needs a transplant there will be enough organs available so that no one dies on the waiting list.
Thanks for your note and for listening. We'll try to include some of
your comments in our next program.
But wow, what a tough blow for your family. I'm intimately familiar with
PSC. A very good friend of mine suffered from it for years. In 2003, she
was transplanted, and since then, she has been in great health. (Full
disclosure: I was the donor.) This was out in California, and the
doctors out there were phenomenal. When I moved here, I started seeing
John Fung at the Cleveland Clinic, and he is wonderful, exceptionally
talented, very capable, and very easy to talk with about the illness and
I know I don't know you or your family, but if there's any way I can
help, please let me know.
All the best,
Thank you for being a donor - my understanding is that the donation process is even harder on the donor than the recipient.
If you and your friend are not already hooked in, there is an on-line support group for individuals with PSC and their caregivers. http://health.groups.yahoo.com/group/psc-support The group tends to be skewed toward people who are having problems and folks relatively newly diagnosed (those most critically in need of support), so it would be great to hear from someone post tx who is healthy (or from a living donor - there was a discussion not too long ago about whether to even consider asking a loved one to be a donor because of the physical and emotional risks involved)!
As far as personally helping - thank you for the offer. What I have taken to doing when someone makes that offer (not really expecting a concrete answer) is to tell them to register as an organ donor and to make sure their family knows of their intentions. You're way ahead of the game on that! The other thing I ask is that they work to change the health care laws so that access to health care is not tied to wealth, good health, employment, or the ability to carry a full academic course load. This diagnosis might mean (daughter) Emma will have to switch schools to one less academically challenging (and less rich in a variety of other ways) because she loses her health insurance the minute she stops being a full time student - Oberlin would accommodate a part time load - but health insurance generally does not.
As far as using your public forum - if it wasn't mentioned yesterday, you might mention that even if you expect to need an organ yourself, or wouldn't pass the blood donor screening, you can still be an organ donor. Many people don't realize that the blood donor screening is different from organ donor screening and don't bother registering on the assumption that their organs wouldn't be useful. What body parts can be used, and from whom, is changing all the time as doctors learn more about the transplant process - and just because one organ isn't working terribly well for you doesn't mean others aren't perfectly healthy.