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Offline Clark

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Canada: ...(solicited donations) will increase in the future.
« on: September 18, 2015, 11:10:10 AM »

Cassy is counting on a stranger to save her life

Carmela Fragomeni[
[/size]Cassy St. Pierre is counting on a stranger to save her life.
[/size]At 29, she needs an angel of a stranger to donate one of their kidneys because her body could fail again, at any time, to accept dialysis. All of her family and friends have been ruled out as good donor matches.
[/size]Cassy, who is under the care of St. Joseph's Hospital, would have to go to Toronto for a transplant if she found that willing stranger.
[/size]Many hospitals — St. Joe's included — won't perform kidney transplants from solicited altruistic donors without any connections to the recipient. There is great debate in the medical community and at present, few hospitals are permitting it.
[/size]"If we allowed it, we'd relax the barrier that protects against coercion," explains Dr. Darin Treleaven, St. Joe's medical director of transplants.
[/size]St. Joe's, however, will refer such patients to St. Michael's Hospital in Toronto, which has the social workers, psychiatrists and expertise to assess the altruistic donor, he said.
[/size]"We didn't have the comfort level, ethically (at St. Joe's) … it's not that we're trying to deny people," he explained.
[/size]Cassy, who needs dialysis daily, feels alone in her quest for help.
[/size]She found a stranger — "a friend of a friend" through Facebook but St. Joe's "wouldn't even test his blood to see if he was a match."
[/size]Only after losing contact with him did she learn St. Joe's will refer her to Toronto in such situations, she says.
[/size]Cassy had her first transplant at 16, but her kidneys failed again at 23, forcing her onto dialysis.
[/size]She's on three waiting lists for a new kidney, including the medically-urgent list, because her dialysis access failed more than a year ago and although doctors developed a new one, she says her veins are starting to fail again. Plus, she is difficult to match because the transplant and blood transfusions have given her a high antibody count.
[/size]"Honestly … as a potential recipient, there's every barrier to prevent me from getting a kidney," says a frustrated Cassy. "You have to be in perfect health. You have to find the donor (yourself).
[/size]"There's a huge ethics board that is trying to protect the donor. Who is protecting me? Who is advocating for me? Literally, I feel like no one is on my side."
[/size]Cassy is a part-time, long-term care nurse living with her parents out of necessity. She is unable to work full-time because of her condition and daily dialysis. She barely has the energy to keep looking for a stranger willing to help, she says.
[/size]"I've run out of people to ask. I have to make a plea to the public."
[/size]Her doctors have told her to stay as healthy as she can and wait on the lists.
[/size]On a calmer and more reflective note, Cassy does commend the care at St. Joe's.
[/size]"They have put me on every list and they are trying to help me … but it's going nowhere because I don't have the (potential) donors to be tested. I feel it's almost futile to wait … I'm just trying to help myself."
[/size]Staying on dialysis is not a good quality of life, she adds. And with the likelihood that her dialysis access will fail again soon, she says, "it's always a scary life."
[/size]If her veins continue to close up, "it's an end of life situation."
[/size]Dr. Jeff Zaltzman, director of St. Mike's transplant program, estimates his hospital has performed between five and 10 solicited donor kidney transplants in the past five or six years.
[/size]"It's not a common occurrence," he said. "It's relatively new."
[/size]As a new frontier, he says it is evolving.
[/size]St. Mike's does the transplants as long as the donor has a legitimate reason and there is no secondary gain, such as getting paid for the kidney.
[/size]It's in the minority of hospitals — about a quarter of those across Canada — that allow them, Zaltzman says.
[/size]Many strangers are turned down because their reasons for donating are not genuine, he says — such as expecting payment, or they back off once they learn of the associated medical risks.
[/size]Meanwhile, many patients resort to soliciting donors publicly through community centres, churches, mainstream media, websites and social media, he says.
[/size]Two recent high profile cases are Ottawa Senators owner Eugene Melnyk, who got a liver donor that way, and the young Kingston twin girls — one got a liver transplant from her father and the other was saved by a stranger.
[/size]Says Zaltzman, "I think as people get comfortable with it, it (solicited donations) will increase in the future."
« Last Edit: September 18, 2015, 11:14:18 AM by Clark »
Unrelated directed kidney donor in 2003, recipient and I both well.
580 time blood and platelet donor since 1976 and still giving!
Elected to the OPTN/UNOS Boards of Directors & Executive, Kidney Transplantation, and Ad Hoc Public Solicitation of Organ Donors Committees, 2005-2011
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