Community Comment

Calling All Organ Donors

July 30, 2009 1:02 p.m. • 12 comments

As most of you know, I have been going through the process of getting on a waiting list for a kidney transplant. I have Polycystic Kidney Disease. In the United States, about 600,000 people have PKD, and cystic disease is the fourth leading cause of kidney failure.

This is probably going to be the driest article I have ever written. I’ll apologize now – because usually I tend to have a sense of humor about everything life has to offer me. But try as I might, I don’t see the humor in kidney disease or in a disease where the only cure is dialysis or a transplant.

In the United States, more than 80,000 people are on the official waiting list, all hoping that someone will die in just the right circumstances and bequeath them the “gift of life.” Last year, only 16,517 got transplants: 10,550 with the cadaver organs allocated through the list, and 5,967 from living donors. More than 4,000 on the list, or about 11 a day, died.
(by Virginia Postrel, The Atlantic, July 9, 2009)
For the complete report (that is excellently written), please see http://www.theatlantic.com/doc/200907u/kidney-donation.

The numbers work like this: Of the 80,000 people needing a new kidney, 21% will get one this year, 36% from living donors and 64% from deceased donors. Of the 80,000 waiting for a kidney, 4,000 will die. Currently there are about 600,000 people in the United States that have PKD – 13% meet the requirements to be bad enough. To qualify for the transplant waiting list, the kidneys have to be functioning at less than 20%. Mine are at 10%.

So – that’s the nitty gritty. Obviously the world needs donors – and lots of them.

I am curious. I have settled into the theory that I will have a cadaver donor kidney. However, there are living donors out there. (I’m not asking for a living donor.) I am curious about you, the living donor. I want to hear your stories. Do you feel blessed by giving something that is very much a part of your body? Are you fearful for your own health? How do you feel if your gift (particularly a kidney) was rejected by the new host’s body? It does happen – that a transplant will be done based on all the right facts, the perfect match, etc., and still the recipient’s body will sometimes reject the new kidney – even with all the antirejection drugs they have to take.

I want to hear your stories. I’d like Dave and I to get a lot of response. That’s my goal – and in the end, I hope my research will encourage you to sign your donor card.

Jeanie

12 comments on this post so far. Add yours!

lewis8457 on July 30 at 3:23 p.m.
I have always had a organ donor certification on my drivers license and wouldn’t be against helping someone before i bite the big one of i could.
raymond_pert on July 30 at 5:04 p.m.
Jeanie, Right along side The Atlantic piece you cite, The New Yorker ran a similar article, “The Kindest Cut” in the July 27, 2009 issue. For those registered with The New Yorker, the article is available online. Otherwise, read it in print. Taken together, the two articles are very good.
JeanieSpokane on July 30 at 5:31 p.m.
Thank you, RP - I know you follow all this stuff, and just today another friend cited the New Yorker. I have to check it out. Or get a subscription or something. One thing that should be addressed, too, besides garnering more donors, is that Medicaid will help with dialysis for the rest of your life; however only three years for a transplant. At $2,000 to $3,000 a month for the mandatory antirejection drugs, it would behoove the government to consider extending the benefits to transplant recipients for their lifetimes - much, much cheaper than dialysis. (And I would be happier, too)
Sue on July 30 at 7:23 p.m.
Jeanie—My aunt was the 10th person to ever get a kidney transplant and the donor was her sister. She also outlived the previous 9 recipients by over 10 years. The process was very primitive compared to what they are doing with all transplants now. She lived to see her 3 young boys grow up, get married and actually got to play with two of her grandchildren. She even outlived my uncle who died of cancer at age 56. Her kidneys didn’t kill her. The rejection medicine that they gave her did but that was still very primitive also. Her donor sister is still alive and blesses the extra 14 years that she was able to spend with aunt Bert. My driver’s license has my donor certification on it and I hope that it doesn’t get used soon but if it does, at least someone else could benefit. Take care and my prayers are with you.
spokelooneh on July 30 at 10:20 p.m.
I apologize in advance, I have a sick, depraved, and morbid sense of humor about such things. And I believe in the old saw, promoted by Reader’s Digest that I read regularly in my youth, that Humor Is the Best Medicine.

http://www.youtube.com/watch?v=8tmLvzubP3I

(graphic, blood)

I will comment on the substance of your query after I’m done reading a few things, I wish you the very best, Jeanie.
marmitetoasty on July 31 at 12:34 a.m.
Waving me donor card…… bugger I just dropped on me toast and now its covered in marmite :)

They can have any bits and bobs of me when I die, well, thats if they are of any use :)

JeanieS you be an amazing woman….. strong and brave, you can have one of my kidneys if it was right…. but its a long way to fly it over…… I know they can just fly me over :)

x
Dave Laird on July 31 at 5:27 a.m.
Good morning, Jeanie, everyone…

If I could help, rather than hinder Jeanie’s search for a spare set of kidneys, I would get a donor card and sign the dotted line.

However, I have multiple injuries to various organs which would mean, upon my demise, some scientist somewhere is going to examine me to see how I made it thus far, rather than begin harvesting my organs. About one-third of my heart is damaged, courtesy of an experimental heart medication administered after a heart attack, both kidneys are somewhat compromised due to diabetes, as well as my liver and spleen, thanks to a reaction to Lipitor. I also have four implants, excluding two stents in my heart, for various broken bones incurred over the span of 63 years and a well-defined creaking when I stand up now. Sneak up on someone? I doubt it. They would hear me coming from a block away.

However, I am doubly or triply blessed for having met and known Jeanie and her significant other lo those many years ago. Her friendship, courage, and her continuous battle with Polycystic kidney disease is a constant and abiding reminder to me of how life and love touches each of us in their own ways.

I am so blessed to have such wonderful, vibrant friends, even if we are stutter-stepping our ways through the years together.

Dave
Jeffrey_Grey on July 31 at 8:30 a.m.
I’m in the same boat as you, Dave. Though I’ve long been an organ donor and though I’d love to contribute something tangible to Jeanie’s admirably optimistic and therefore courageous struggle, at this point I rather think my contribution is more likely to be of the ‘specimen in the jar of formaldehyde’ that the lecturer taps with his pointer and then says, “Now here’s an absolutely classic example of ‘what can go wrong’” kind.

Ah well… ‘They also serve who only sit in a jar on someone’s desk.’

(On a serious note and absent religious concerns, which are no business of mine to challenge - I can’t see why anyone wouldn’t be an organ donor. I mean, wasn’t one of the first things you learned in kindergarten that if you’re through with something, you ought to pass it along so someone else has a chance to benefit from it?)
JeanieSpokane on July 31 at 8:41 a.m.
thank you everyone for your comments. Sue - when I was going through the transplant center with all the various people that are my “team,” one of them gave me a history of transplants in Spokane. One of the first ones (I think in ‘85) is still going strong, which is remarkable. Donor kidneys last on the average between 10 and 20 years. Any more - it is longer.

It’s kind of fascinating to observe all the steps although I’m a little “too close to the tv” sometimes. It’s awesome and wonderful and terrifying all at the same time.

Any readers out there looking for a donor organ??? I’m curious how YOU feel, too.
spokelooneh on July 31 at 8:18 p.m.
/big heavy sigh.

Oh my. Well I read the referenced article and a bunch more stuff about kidney transplantation. Which is rather miraculous in its concept anyway.
(((((Jeanie)))))

I really had held some hope that going from a presumed non-donor system (upon death) to a presumed donor system would solve the problem, but the referenced article put the kybosh on that idea.

Damn.

Damn damn damn.

I doubt I could donate a kidney because of my hypertension condition, even though it’s perfectly controllable with very low cost meds.

Though it won’t, apparently, solve the problem entirely, I still think that we have to move towards a default opt-in policy. I know that will be difficult to accept in this peculiar American society, which for some reason has this perverse worship of a dead body, when our souls, if they exist, have already gone on to their great reward, or reincarnation, or nothingness, depending on your belief.

Relatives of the deceased spend all this money on $5000 caskets, and expensive embalming, for what? For WHAT? The body’s DEAD. It doesn’t freaking matter!

Leave all that money IN the estate, to be distributed to the (living) heirs, or spend it on an OUTRAGEOUS party celebrating the LIFE of the deceased.

I’m sorry, I digressed. Very sorry.

A long time ago, in College, I had my bone marrow drawn in case I could help someone out with a bone marrow transplant. I never heard any thing more from the hospital, I don’t know why. But 15 years later, I met a woman who’d had leukemia and who’d been the beneficiary of one of the first bone marrow transplants in Washington, but before I learned of that, I knew her as the most honest, caring, professional Human Resources persons I’d ever met.

She was truly a wonderful person. Had she not had that bone marrow transplant, she’d likely have died. And so many people would not have had the incredible experience of interacting with her. This was at a company that provided supported living services to the developmentally disabled. She had a knack for selecting and mentoring employees that would excel at providing that service.

/sigh

(((((Jeanie)))))

I wish you peace and good health.
spokelooneh on July 31 at 8:27 p.m.
Oh, and, I think you should take a look at this, not suggesting DO this, it just brings out all the issues…

“Larry Feldman desperately needed a kidney. After two god-awful years on dialysis, watching his life ebb away while waiting on a transplant list behind 74,000 other Americans, the gun-toting couch potato decided to risk everything and travel to China, the controversial kingdom of organ transplants. But Larry urgently needed his cousin Daniel’s help … even though they have been on the outs with each other for years.

Sure, Chinese law forbids transplants to Westerners, but that didn’t faze Larry. He was confident he could shake out a single pre-loved kidney from the country’s 1.3 billion people. But wait: Larry was never one to not get his money’s worth. Since he was already shelling out for a trip to China, he decided to make it a twofer: He arranged to pick up an (e-)mail-order bride while he was at it. After a tireless search on the Internet, he already knew the woman he wanted.

Backed by a quarter-million-dollar disability settlement (was it the icicle falling on his head or the truck rear-ending him?) and armed with an all-purpose letter of recommendation from a devoted nun, Larry ventured forth from his Florida condo on an unlikely search for life and love in the most cryptic country on earth. Conflicted about the ethical issues surrounding medical tourism, and with no time to cultivate even a single Chinese contact, Daniel left the next day, on his own dime.

So begins the quest of two star-crossed cousins to rejuvenate Larry’s failing body and ever-romantic heart, while avoiding getting tossed into a Chinese slammer. An unforgettable adventure filled with Red Guards who waltz at midnight and former enemies who prove more true than family, Larry’s Kidney is the funniest yet most heartwarming book of the year.
…”
http://www.harpercollins.com/books/9780061708701/Larrys_Kidney/index.aspx
JeanieSpokane on August 01 at 10:04 a.m.
((Spokelooneh)) I love your thoughts on this and the summary of Larry’s kidney. I may have to get the book, just for the laughs.

I am hoping for a cadaver kidney (although I really don’t like the word, cadaver). I really can’t conceive lining up all my friends (seen and unseen) and going up and down the line saying “I love ya man, can I have your kidney?” It’s so maudlin.

And I totally agree with you on the terrible waste of expensive funerals, caskets, etc. I want to be buried as is (with good parts given away first) and fertilize the earth with my essence.