'I know I saved someone's life': How living donors are changing organ transplant

[Clark]

http://ottawacitizen.com/news/local-news/i-know-i-saved-someones-life-how-living-donors-are-changing-organ-transplants
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[/size]'I know I saved someone's life': How living donors are changing organ transplants



[/size]ELIZABETH PAYNE
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[/size][size=1.333em][/size][size=inherit]She’s been called both crazy and amazing for donating an organ to a stranger, but Annemieke Vanneste may be what scientists call a ‘super altruist.’ In the wake of Eugene Melnyk’s high-profile transplant plea, [/size][/size][size=1.333em][/size][size=inherit]Elizabeth Payne[/size][/size][size=inherit] tracks at the rise of the ‘live donor’ and the ethical quandaries they raise.[/size]
[/size] Annemieke Vanneste spent last Christmas in a hospital bed trying not to roll on her side and dealing with some nasty side effects from painkillers.
[/size]The Ottawa woman wasn’t there because of an accident or a disease, or even a mental illness — although there was a time when some thought people like Vanneste must be crazy.
[/size]Why else would anyone eagerly choose to give one of her kidneys to a complete stranger?
[/size]The title of a 2003 scientific research paper captured the skepticism of the time: “The living anonymous kidney donor: lunatic or saint?” it asked.
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[/size]Times have changed. Living organ donors like Vanneste are now responsible for a significant number of organs transplanted each year. Living donors even slightly outnumber deceased donors in Canada when it comes to kidney transplants. In 2013, there were 588 living organ donations in Canada, compared to 553 deceased organ donations.
[/size]Two high-profile cases this year — the Ottawa Senators’ extraordinary plea for a liver donor to save team owner Eugene Melnyk’s life, and a Kingston family’s plea for a liver to save one of their twin Vietnamese toddlers — have put living organ donation in the spotlight.
[/size]Most living donors are family members or close friends. Anonymous donors, like Vanneste, are still relatively rare, but are increasingly important to transplant programs.
[/size]Vanneste is no saint, she insists, although the facts aren’t entirely convincing.
[/size]The 54-year-old agreed to undergo surgery to have her kidney removed on Dec. 24, meaning she would spend Christmas at Toronto General Hospital instead of at home in Ottawa with family and friends. She was given the option of changing the date, but declined.
[/size]“They offered me Dec. 24 and I said that would be the coolest Secret Santa gig ever. I think the symbolism is pretty cool.”
[/size]Vanneste is naturally altruistic and may even be part of a rarer group of extreme altruists whose unusually empathetic brains have been the subject of recent research. They are so unusual that they are sometimes treated with suspicion. Researchers note that anonymous donors they studied were often reluctant to talk about their stories because of the negative reaction they sometimes get.
[/size]Vanneste works with disabled children at Crystal Bay Centre for Special Education in Ottawa’s west end and has a second job working in a group home with developmentally disabled adults. She is also a frequent blood donor and a regular volunteer (she and her rescue dog Rory visit the dementia wing of an Ottawa nursing home every second Sunday).
[/size]She has witnessed the benefits of organ donation within her own family — her sister Caroline also donated a kidney last year, to a friend. Vanneste’s brother-in-law, Dr. Aubrey Goldstein, who is president of the Canadian Transplant Association, received a liver from a deceased donor in 1998.
[/size]The desperate need for donated organs is something members of the family understand well. Caroline Vanneste said she donated to a friend after getting to know so many people who had benefitted from organ transplants through her husband’s involvement with the Canadian Transplant Association. “I met a lot of people who had benefitted from transplant. I felt that I had this advantage and thought I should share some of my health somehow,” said Caroline.
[/size]For her sister Annemieke, becoming an anonymous donor made perfect sense.
[/size]Vanneste, who is petite and fit, has been called crazy. More frequently, though, she is called amazing. She says she is just someone who appreciates the difference an organ can make to a person in need, at relatively little cost to a healthy donor.
[/size]“Most people’s reaction is ‘Oh my god, you are amazing,’” she says. “No, I don’t see myself as being all that amazing. Yes, it is amazing for the recipient. But I am not amazing.”
[/size]Just 11 years after the first living anonymous donor kidney transplant was performed in Canada — in Vancouver in 2004, — people like Vanneste, while still the exception, are becoming better understood and increasingly relied on to save lives.
[/size]Dr. David Landsberg, medical lead of the kidney transplant program at St. Paul’s Hospital in Vancouver, and the chairman of Canadian Blood Services’ Living Donor Advisory Committee, was an author of the paper that asked whether anonymous donors are “lunatics or saints”. He admits he had to be convinced. His initial reaction was “We can only do surgery on people who are sane and by definition giving a kidney to a stranger is an act of insanity. I didn’t think it was the right thing to do and people challenged me.”
[/size]His research to study the question proved his concerns unfounded. Most anonymous donors, it found, were psychologically intact and very altruistic.
[/size]“For years we have treated these people like they are nuts,” says Linda Wright, director of bioethics at the University Health Network in Toronto, which includes North America’s largest living liver donor program. “They are not.”
[/size]Many observers were surprised at the overwhelming response to the plea on behalf of Eugene Melnyk. Within a week, hundreds of people had answered the call, many of whom had no idea you could even donate part of your liver until they heard about Melnyk’s desperate plight. A donor who volunteered to have up to 70 per cent of his or her liver removed and transplanted into the critically ill businessman was selected. The surgery was a success and both donor and recipient are recovering. The donor remains anonymous, both to the public and to Melnyk, at least for now.
[/size]The case raised awareness about the chronic shortage of organs — something the Senators are vowing to make the focus of a public campaign — as well as the growing trend of transplants from living organ donors.
[/size]It also raised numerous ethical questions.
[/size]For one, performing surgery on a healthy patient is a violation of the hippocratic oath’s pledge to do no harm.
[/size]Careful attention to donor screening and informed consent, in addition to advances in medical technology, help balance the risk donors face by undergoing surgery. “In general, you will find there is an enormous amount of work done to make sure the donation is as safe as possible for the donor,” said Dr. Katherine Tinckham, who is medical adviser on transplantation for the Canadian Blood Services, which runs a program to match kidney donors with recipients. In Canada, more than 97 per cent of living donor kidney transplants are successful, she said.
[/size]That does not mean there are not risks.
[/size]Liver donation, especially to an adult recipient, which requires that a larger portion of the donor liver be removed than with a donation to a child, comes with more risks than kidney donation. One study put the risk of death for living liver donors at one in 500, while the risk of death for living kidney donors is about one in 3,200, according to a study published in the Journal of the American Medical Association in 2010.
[/size]In the United States, five living liver donors have died.
[/size]Toronto General Hospital, part of University Health Networks, which is home of the biggest living liver transplant program in North America, has had no deaths among nearly 700 donors since the program began more than a decade ago. But Dr. Gary Levy, who now leads the living donor liver program there, says that does not mean there are not risks. About 40 per cent of donors experience complications, ranging from pain to infection, pneumonia and other symptoms.
[/size]The information package given by the hospital to prospective liver donors has this to say about risk: “It is worth noting that the risk of death is higher after live donation than the risk of death after routine bypass surgery.”
[/size]Kidney donations are not as risky. They can be done laparoscopically or, as with Vanneste, with a micro-incision. Donating a liver is a much longer procedure and requires more recovery time, although livers grow back to full size within a matter of months and donors go on to lead normal lives. Still, donating a kidney is no picnic, notes Arthur Caplan, head of the division of medical ethics at New York University. “Most transplant surgeons have two kidneys; if it was so easy, they wouldn’t.”
[/size]Balancing potential risks with benefits makes sense for family members or close friends who have a strong incentive to want to help their loved one survive and become healthy again. It is also slightly safer for the recipient to receive an organ from a living donor rather than a deceased donor, and more likely to succeed.
[/size]But what benefits do anonymous donors get that balance the potential risks?
[/size]Vanneste has a simple answer. Watching her brother-in-law turn from jaundice to pink after his liver transplant made her understand the life-saving difference the gift of an organ can make.
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