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Author Topic: TRANSPLANT DILEMMA GROWS  (Read 2778 times)
okarol
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« on: November 28, 2006, 11:07:54 PM »

TRANSPLANT DILEMMA GROWS

Nov. 26, 2006
By Barbara Feder Ostrov
Mercury News

Their first meeting was as awkward as a blind date.

Herbert ``Sonny'' Davis needed a new kidney. Matt Thompson had one to give.

But first, they had to forge a friendship, or something like it.

Thompson learned about Davis' plight from a co-worker. But when he called Davis' transplant program to volunteer a kidney, a nurse turned him down flat: He couldn't donate to a man he had never met because the program simply wouldn't allow him to bear that risk for a stranger.

``Well, get to know him,'' another transplant employee advised Davis and his wife, Donne.

So began an unlikely friendship between Davis, a 65-year-old Jewish physicist from Menlo Park, and Thompson, a born-again Christian young enough to be his son. Ultimately, their bond satisfied Davis' transplant surgeons. Both men are recovering after their Nov. 14 operations at University of California-San Francisco.

Their story has a happy ending. But it highlights serious ethical questions about the changing world of organ donation, as living donors become more common, and patients increasingly go online to find the organs the medical system can't provide.

Medicine's ``do no harm'' principle requires doctors to justify performing risky surgery on a healthy donor. The closer the relationship, ``the more medicine feels comfortable saying, `We'll subject you to risk,' '' said University of Pennsylvania bioethicist Arthur Caplan.

But what is an acceptable relationship between donor and patient, and who defines it? Is it ethical if some people ``jump ahead'' of other, sicker patients on organ waiting lists simply because they are able to find a donor?

Some transplant programs do allow strangers to donate organs after rigorous medical and psychiatric screenings. Others, however, restrict donations to family and close friends, relying on a proven bond to justify the risk. Strangers too, they worry, might have mental problems or might be secretly paid, which is illegal in the United States.

``Kidney donation is not like giving blood,'' said Dr. John Scandling, medical director of the adult kidney and pancreas transplant program at Stanford University Medical Center. ``It's major surgery. You can die.''

One patient's need

Davis has lived with damaged kidneys for decades, the result of a childhood infection. He needed dialysis for four years before he received his first kidney transplant in 1995. He needed it again when that kidney failed nine years later.

His wife, Donne, who was not a compatible kidney match, begged for a donor in an emotional letter sent last summer to 140 friends and relatives. Davis, one of nearly 69,000 Americans needing a kidney transplant, faced up to six years on a waiting list.

The plea found its way to Thompson through Donne Davis' former boss at Foothill College, where she worked as an outreach counselor. The woman now works at the San Jose airport with Thompson, a security employee.

Thompson, who once worked as a missionary in Brazil, said he knew the letter was meant for him.

``I felt that God was compelling me to help out,'' Thompson said. ``It was very frustrating, just wanting to help right away, but I couldn't.''

Davis and Thompson knew they had to forge a bond that would assure Davis' surgeons that Thompson was donating his kidney for the right reasons. But where to start?

The Davises visited Thompson at his San Jose apartment, where they met his wife, Brenda, and his infant daughter, Grace, ate dinner, and played a board game. It was uncomfortable for everyone, as if they were trying to ``force a relationship,'' Thompson said.

``Nobody wanted to really say very much,'' Davis recalls. ``I just came right out and asked, `Why do you want to do this?'

``He was very upfront -- he said, `I'm a Christian and it's the right thing to do.' He was very humble and gracious and had no hidden agenda. We just clicked.''

Picnics, short hikes and more dinners followed. Conversations flowed more easily. Davis and Thompson talked about the stock market, and when the talk flagged, their wives filled in the gap.

``We started off as strangers, we moved to friends, and after the surgery, they told me, `You're family.' '' Thompson said. ``That's pretty cool.''

Yet Thompson still refers to Davis as ``the recipient'' -- a holdover, he says, from when he was getting to know him.

Thorny questions

Was this relationship ethical? Transplant experts and medical ethicists disagree.

Davis was being treated at Kaiser Permanente's kidney transplant program in Northern California, which was beset by administrative problems so serious that it was shut down in May amid investigations by state and federal officials. The Davises say they were happy with his care at the program, but he, like other Kaiser patients, was transferred to UCSF, where he had received his first transplant.

A Kaiser spokesman would not describe the former program's protocols for handling living donors, saying that since the program had closed such questions were best addressed by UCSF.

But some ethicists told the Mercury News it was unusual, even ethically suspect.

``It's inappropriate, absolutely,'' said Stanford bioethicist David Magnus, who consults with that university's transplant program. Living donor programs aren't intended ``to find ways for people to artificially become friends, but to allow people who are close friends to donate. It's really just a way of skirting the system.''

Stanford restricts donations to friends and family, he said.

Unfamiliar field

Stranger donation is a relatively new ethical arena for transplant programs.

As recently as a decade ago, only close relatives were regarded as potential candidates to donate organs such as kidneys and parts of the pancreas, liver or lungs. The first kidney transplant, in 1954, involved identical twins. Yet improvements in anti-rejection drugs now allow husbands and wives, and even strangers, to be good matches, requiring only that their blood and tissue types are compatible. Kidneys from living donors last about twice as long, 17 years or so, as those from cadavers.

The Internet has vastly expanded opportunities to link altruistic donors with far-away patients, whether via e-mail pleas forwarded to hundreds of people, or desperate posts on craigslist and Web sites like www.matchingdonors.com .

In screening living donors, programs vary widely in the types of relationships they'll accept. At the University of Minnesota's program, strangers are allowed to donate a kidney to someone they'll never meet. Other programs allow ``paired donation,'' in which, say, a husband who is not a good match for his wife would donate to someone else in return for a donor who was a better match for his wife.

On the same day as Davis' and Thompson's operations, five transplant operations were carried out at the same time in Baltimore, with the donors a combination of relatives and a stranger.

``Many of us do give donations to strangers, financially, but we're not giving up a body part,'' says University of Pennsylvania bioethicist Art Caplan. ``It's dangerous enough that medicine says, you ought to care about the person to justify it. The consensus is that ethically, you don't force relationships, you work with them as they present themselves. You check them to see if they're real.''

But how do doctors decide what's real? At California Pacific Medical Center, transplant surgeons evaluate relationship on a case-by-case basis, said spokesman Kevin McCormack -- there's no ``sliding scale of friendship.'' To ensure that donors have the right motives and aren't being coerced, they are examined by a different team of doctors than the recipient's and offered every opportunity to decline.

At the University of California-Davis transplant program, strangers are allowed to donate anonymously to patients who most need the organ, or they can direct their organ to a particular patient, after medical and psychiatric screenings, said Dr. Richard Perez. ``We've had people that have donated who were in the same church congregation,'' he said, and the program likely would have accepted Thompson as a donor because of the similar circumstances. Perez thinks living donations add organs to the overall supply, making it easier for other patients to obtain a cadaver kidney.

But Stanford bioethicist Magnus fears the development of a ``free market'' for living donors, no matter how altruistic they are. Patients with the resources to find a matching donor could subvert a longstanding, if imperfect, organ allocation system designed to ensure that the sickest patients get priority.

``The root problem -- a lack of organs -- just gets worse and worse, the wait times gets longer and longer and the waiting lists get larger and larger, so what happens under those circumstances is that people get desperate,'' Magnus said. ``Every time we put an organ in a patient, there's some other patient who's not getting it.''

IF YOU'RE INTERESTED

For more information about organ donation, visit www.donatelife.net or call (804) 782-4920.
Contact Barbara Feder Ostrov at bfeder@mercurynews.com or (408) 920-5064.

original story: http://origin.mercurynews.com/mld/mercurynews/living/health/16101775.htm?source=rss&channel=mercurynews_health
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
angieskidney
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« Reply #1 on: November 29, 2006, 12:48:57 AM »

Good article!  :2thumbsup; I remember when I had my first transplant in 1990 and back then you could ONLY get a kidney from IMMEDIATE family only.
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FREE Donor List for all Kidney Patients!

diagnosed ESRD 1982
PD 2/90 - 4/90, 5/02 - 6/05
Transplant 4/11/90
Hemo 7/05-present (Inclinic Fres. 2008k 3x/wk MWF)
jbeany
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« Reply #2 on: November 29, 2006, 05:50:31 AM »

I say, if they are offering for altruistic reasons, there shouldn't be any objections from anyone.  The sickest patient doesn't always get the cadaver organ first anyhow, because of location. Why should this be any different?  I just view it as one less person on the list, so it speeds up the waiting time for everyone.
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okarol
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« Reply #3 on: November 29, 2006, 09:04:23 AM »

Here's my two cents on this article:

But Stanford bioethicist Magnus fears the development of a ``free market'' for living donors, no matter how altruistic they are. Patients with the resources to find a matching donor could subvert a longstanding, if imperfect, organ allocation system designed to ensure that the sickest patients get priority.
``The root problem -- a lack of organs -- just gets worse and worse, the wait times gets longer and longer and the waiting lists get larger and larger, so what happens under those circumstances is that people get desperate,'' Magnus said. ``Every time we put an organ in a patient, there's some other patient who's not getting it.''

I don't understand how you've got a free market when it comes to altruistic donors? That's like calling them 'paid volunteers.' That's not really fair, especially when no cash or favors are exchanged.

My next point is regarding "organ allocation system designed to ensure that the sickest patients get priority. " - which is inaccurate in the case of kidney transplants - where the sickest do not get the kidney first - it's based on wait time - which will hopefully be changed, but for now, that's the way it is. The distinction is important, since the majority of people waiting for organs are kidney patients.

The other statement "Every time we put an organ in a patient, there's some other patient who's not getting it." seems like backwards thinking. Every time a patient brings a living donor to donate, whether it's a swap on altruistic donation, they are essentially removing themselves from the list, thereby allowing other patients to get a better chance on the waitlist for the small pool of cadaver kidneys.

More and more hospitals have a category called Altruistic Directed Donors. It doesn't mean they develop a phony friendship. It means that a donor sees a need and wants to help solve it. You might say that it's unfair - if they want to help a stranger they should do an anonymous non-directed donation at their local transplant center. Unfortunately, most people who do volunteer work, or donate money to causes, want to see the results of their effort. They have a need to know that the outcome of their sacrifice has been worthwhile. Donating anonymously is a route that many people cannot relate to, and it is a very special, small group who are willing to do this.

Even UNOS has expanded their idea of "community" when looking at where patients find donors. They realize that many of these dialysis patients are housebound, unable to connect with a person from their workplace, church or social group. The internet brings the world in to them, and that in a sense becomes their community. That opens the possibilities for them.

Those who are on the waiting list are getting sicker, so even a perfectly fair system is of no use if it can’t provide them with the organs they need in time to save their lives.

~Karol
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
angieskidney
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« Reply #4 on: November 30, 2006, 02:38:47 AM »

Quote
"organ allocation system designed to ensure that the sickest patients get priority. "

I just had a thought. What if they think that people without kidneys are NOT the sickest simply because we can live on a machine where as people without other organs can't?
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FREE Donor List for all Kidney Patients!

diagnosed ESRD 1982
PD 2/90 - 4/90, 5/02 - 6/05
Transplant 4/11/90
Hemo 7/05-present (Inclinic Fres. 2008k 3x/wk MWF)
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