‘Got kidney?’
Single dad’s Facebook plea for an organ among growing number of public appeals as doctors work to increase number of transplants from living donors
Glenn Miller needs a new kidney. But so do 513 other British Columbians.
The single dad from Pitt Meadows was born with polycystic kidney disease, the same genetic condition that required his mother to undergo a kidney transplant 25 years ago.
Miller, 51, works in sales and is raising 10-year-old twin boys while in end-stage renal failure.
The next step is dialysis and the years-long waiting list for a deceased donor’s kidney — unless, doctors say, he can find a living donor.
“Once this started, I’m told I had to find somebody,” said Miller. “It’s a big ask to ask a friend, to say, ‘Hey, what do you think about giving me a kidney?’”
He has asked a few close friends and family members, but without success.
His girlfriend of five years, Cindy Seitz, volunteered to give him one of her kidneys but she was disqualified as a donor because a CT scan found cancer in her liver.
A couple of years ago, Miller put out a plea on Facebook. No one responded. Embarrassed, he deleted it a few days later.
Now he’s trying again, bolstering the ask with a shareable photo of himself and some basic information: age, blood type, a link to his website and the query: “Got kidney?”
Kidneys are the most wanted organ in B.C. Out of the more than 600 people on the province’s transplant list in 2016, about 80 per cent were waiting for a kidney.
Appeals like Miller’s have become increasingly common, partly because of how people communicate in the social media era, but also because of an increased push by doctors to get patients with chronic kidney disease a new organ earlier in care — before they go on dialysis or on the list for a kidney from a deceased donor. B.C. Transplant says it’s trying to increase its live kidney donation numbers.
Studies show living donation leads to better health outcomes for the recipient and significant savings for the health-care system as the patient avoids or gets off dialysis, which costs about $80,000 a year.
While the number of transplants using a kidney from a cadaver has almost tripled from 63 to 173 over the last decade in B.C., the number of transplants using a kidney from a living donor has stagnated over the same period. Last year, 95 such transplants were performed, compared to 110 in 2015. The 10-year average is 109.
The shift toward living donation puts the onus on patients to find their own donor kidney. For some, it’s a tough ask. “Some people are very comfortable, but other people are very reluctant to ask,” said Dr. David Landsberg, provincial medical director of transplant services for B.C. Transplant.
“Part of our strategy is to work with patients and their families for strategies on donor outreach,” he said. “How do you frame the question? How do you get the word out and not make people feel uncomfortable or obligated and potentially jeopardize relationships?”
Some people, after trying family members or friends, turn to public appeals. Public solicitations may get a lot of attention, but it is unclear how effective they are at finding a successful donor.
There are drawbacks, such as a loss of privacy. Public appeals also raise issues of fairness, said Landsberg, in cases where “someone has a very compelling story that might be more attractive to the public than somebody who doesn’t ... Typically, if it’s a child, for example, we get lots of calls.” Last fall, the Canadian Society of Transplantation produced a position paper acknowledging issues around public solicitation, but concluded the benefits outweighed the concerns. It was “ethically and legally acceptable” for transplant programs to consider potential living organ donors found through public solicitation so long as there is no financial gain involved, it said.
Heather Johnson, program director of the B.C. and Yukon chapter of the Kidney Foundation of Canada, encourages all types of appeals, including public solicitations.
“We would say whatever works,” said Johnson, whose organization is working to increase donation rates by 50 per cent in five years.
“You got to get creative” to get the message out, whether it’s on social media or on a personal blog, on a T-shirt or a funny pin that kickstarts a conversation about kidney donation, she said.
“I don’t think there’s a problem as long as there’s no financial concerns (buying and selling organs is illegal in Canada) and there is informed consent.”
Landsberg says it is rare for solicitations to lead to a donor who is a complete stranger. “People are much more likely to come forward when there is a connection,” he said.
In 2013, Victoria’s Kevin Campbell took to wearing a T-shirt emblazoned with “I need a kidney.” He eventually found a donor, a distant relative who lived in Alberta, through social media.
Another Victoria family took out an ad in a paper looking for a donor for their three-yearold child. In the end, a family friend came forward.
In a recent case, Castlegar mom Jana Tremblay put out a Facebook post searching for a donor for her 14-year-old son Zach. Her post was shared more than 7,000 times. A former childhood friend with whom Tremblay reconnected on Facebook offered to donate her kidney to the teen. The transplant is scheduled for June.
The number of unrelated donors in living kidney donations is on the rise, said Landsberg.
In 2015, 44 per cent of living kidney donors were biologically related to the recipients, 43 per cent were unrelated, and 13 per cent were part of kidney paired exchange donations, which are kidney swaps that occur when a living donor is incompatible with the recipient and exchanges kidneys with another donor/ recipient pair. In 2006, 65 per cent of living donors were biologically related to the recipients and 34 per cent were unrelated.
Anonymous donations, or donors who give up their kidney without a recipient in mind, are rare. Last year, only three such transplants were performed in B.C., and six in 2015.
Megan Owen-Evans is one of the few altruistic individuals who have donated a kidney to someone she does not know.
The seed of her idea was planted early when, in Grade 5, she had a friend who underwent dialysis and sympathized with his plight.
As an adult, she contacted B.C. Transplant to join its anonymous donation program and donated a kidney in 2012. To this day, she does not know who received her kidney, but thinks it may be a young woman because in a letter the recipient sent her months after the surgery, the recipient signed off with “xoxo” and a heart.
The surgery comes with risk, like all major surgeries, but it is small, said Landsberg. Most procedures today are performed laparoscopically, requiring only small incisions and reducing recovery time to about four to six weeks from three months with standard surgery.
Owen-Evans, who was 40 when she did the transplant, took three weeks off work following the surgery. She was playing soccer again after seven weeks, and completed a Tough Mudder event less than four months later.
The donation was “the best thing I’ve done in my life,” she said. “There’s only so many things you can do in your life to have an impact. It’s something to know I’ve changed somebody’s life for the better, and hopefully they get many more fulfilling years.”
Since Miller circulated the Facebook photo with his kidney plea, which he composed with help from Jana Tremblay, three people have reached out to him to ask how they could donate. None has worked out.
Miller is still looking. He had resigned himself to dialysis in the past, but now wants to try to give himself his best chance at a healthy life.
“I committed to dialysis long before trying to find a donor. I wasn’t even going to look for one because it’s so hard.
“You can only do it so many times and people get sick of seeing it,” he said of sharing his Facebook plea.
“But Jana says keep sharing it, keep doing it.”