It is the most monumental thing to ask for; first from family members, and then in a widening circle to friends, acquaintances and finally strangers.
But for people suffering from kidney or liver disease, it is their best – and often only – chance at survival. And so they go on Facebook, ask their rabbis to spread the word and write letters to The CJN, pleading for someone to donate a healthy organ.
“It’s not easy,” says Debbie Richmond, 57, who needs a kidney and says looking for an organ has become a full-time job. “I’ve never been one to ask people for anything, but in this case you have to reach out for help.”
For a long time, organ donation was seen as taboo in the Jewish community, according to Rabbi Reuven Bulka, chair for 12 years of the board of directors of the Trillium Gift of Life Network, an Ontario agency that promotes and co-ordinated organ donation, until the board of directors was dissolved by the provincial government three months ago.
But as medical science has advanced and the halakhic problems posed by organ donation have been “more or less resolved,” it is much more widely accepted, said Rabbi Bulka, an Orthodox rabbi and rabbi emeritus at Congregation Machzikei Hadas in Ottawa. And because living donation does not need to grapple with the thorny issue of when death occurs, it is even less problematic, he said.
“The general consensus is that it’s a wonderful thing to do but no one can impose that obligation on someone because it does involve a certain amount of risk,” he said. “Halakhically, we can not impose it on someone, but we can certainly propose it as a possibility.”
While Jewish law does not allow someone to jeopardize their own life, organ donors are so thoroughly vetted that the risks are minimized, he said.
“If one can do it, that’s as big a mitzvah as there is. To save someone else’s life, to have that on your resume, that’s phenomenal.”
There is no shortage of people who need the ultimate gift. In 2017, (the most recent year statistics were available) 3,197 adult Canadians were waiting for a kidney transplant and another 418 needed a new liver, according to the Canadian Institute for Health Information (CIHI). That list does not reflect the depth of the true need. Kidney patients only go on the transplant list when they are on dialysis, but the life-prolonging process carries its own risks and side effects. The best time to get a kidney, is before dialysis is even needed.
The sad truth is that some of those on the waiting list will die before they receive a transplant. In 2017, 295 people either withdrew or died while waiting for a kidney and 182 either withdrew or died while waiting for a liver. (People can leave the waiting list if their health improves, or if they become too ill to become eligible for a transplant, according to CIHI statistics).
Given these statistics, the pressure to find a donor is intense.
Susan Radun, 63, is in desperate need of a new liver. Hers is scarred by disease, and a dozen years after being diagnosed, she finally went on the transplant list in December, 2018.
“You wouldn’t know I’m sick at all, I have very few symptoms but I’m starting to look a little jaundiced,” she said.
Her blood type is O, the universal donor, which means that a healthy liver from a deceased donor that could work for her would go to one of the hundreds of other, sicker people on the list.
Her only hope now is to cast a wide net to find someone willing to donate a portion of their healthy liver, which will regrow, to replace her damaged one.
Radun has had six people step up so far and go through the rigorous screening process, but they have all been rejected.
In one case, a marathon runner – a friend of a friend – was found to have cancer, which would have otherwise gone undetected until it was far more advanced.
“She was coming to save my life and I ended up saving hers,” says Radun.
Although time is now of the essence, on her Facebook page Radun says she guesses she has between one and two years before a transplant is essential, asking someone to undergo the testing and then a lengthy operation, is still not easy.
“It’s hard to ask and it’s been a little easier for me because my husband has been willing to put himself out and get the word out,” she said. “It’s very hard for me, I’m a very private person. I’ve been independent my whole life, I’ve had my own business. It’s hard for me to be vulnerable like that.
Debbie Richmond, who needs a kidney, also feels relatively well, but the lab tests reveal otherwise. While most people first ask their family, for Richmond, who was adopted at birth, that isn’t an option. She has found a few members of her birth family over the last couple of years, and learned that some of them also suffer from kidney disease.
“Nobody’s banging down the doors,” to donate, she said. “Most people don’t understand the reason I need a kidney is that both of mine aren’t working and you can live with one kidney.”
In a religion where one of the over-riding values is saving a human life, it is not surprising that Jewish organ donors speak of it in religious terms.
Rabbi Deborah Zuker uses the word “bashert”, or fated, when she talks about how she ended up donating a kidney to David Uzan, 38, in February.
Rabbi Zucker, the associate rabbi at Ottawa’s Kehillat Beth Israel Congregation, met David’ Uzan’s wife, Ru Uzan, when they were working together on an initiative to promote inclusion of children with special needs in the Jewish community.
“How we met, through our children, felt profound and significant, that this is how families are brought together and showing our kids how we support each other as community members,” Rabbi Zuker said.
Saving a life is one of the “highest mitzvot one can do,” acknowledges Rabbi Zuker, but there was another Jewish value involved here as well, she says.
“I felt something very Jewish in the way the community rose up to support my family and the recipient’s family. People really, really, surprised and impressed me, It was quite astounding to see,” she said, recalling the meals, rides and play dates that were arranged for both families’ young children.
Three months after the transplant, Rabbi Zuker says both she and Uzan are back at work and have recovered.
It’s been nearly a decade since John Anhang of Toronto donated a kidney to a Hebrew University professor living in Jerusalem, who remains healthy and is continuing to bike, hike and work.
The surgery took place in New York, where Anhang first saw the notice in a Jewish newspaper that someone needed a kidney. The donation was facilitated by Renewal, a Jewish organization that promotes living kidney donation.
Three months after the surgery, Anhang was so moved by the experience that he decided to start a Canadian branch of Renewal. (Renewal is not involved in liver transplants, which entail a more onerous surgery).
“I thought we have roughly 200,00 Jews here in the GTA (Toronto area). There must be a number of people here who are in need of kidney transplants here in the community and there must be people like me who would be willing to be kidney donors.”
Renewal organizes information nights at synagogues to help people who are looking for an organ and assists potential donors. While it is illegal in Canada for people to be paid for an organ, Renewal can reimburse people for expenses such as transportation and childcare while they undergo testing.
People who need a kidney typically have a network of family and medical professionals to support them, but donors have no one, Anhang says.
“We hold the hand of the donor all the way through it.
“They don’t know how to navigate the health care system and the hospital to try and get tests done in the most expeditious manner possible. There’s a lot of information online but they aren’t sure what’s reliable and what’s not,” Anhand said. “The donor, without a lot of hand-holding, probably won’t do this.”
Renewal Canada’s work took off about two years ago after an event at a Chabad synagogue for a woman who needed a kidney, Anhang said. At the end of the presentation by a rabbi and a donor, Anhang was overwhelmed when more than 50 people came forward to be tested. The charity ran out of registration forms and scrambled to take everyone’s name down that night.
Renewal has facilitated about half a dozen transplants in the last six to eight months, he said.
“Unfortunately, or maybe fortunately, the more we do, the more people approach us. What happens is the more transplants we do, the more word gets out in the Jewish community and the more people phone us,” he said.
Currently Renewal Canada has 23 people who need a kidney on its list. The group mainly assists people in Toronto, but Anhang has given advice to people across the country on how to find a donor and has done presentations in his hometown of Montreal.
Most, but not all, the people on Renewal Canada’s list are Jewish. The charity does no advertising or education outside of the Jewish community.
Renewal started in the Orthodox community in the United States, where it has recently done its 500th transplant. In Toronto, about 90 per cent of donors are Orthodox, as is Anhang, while about 80 per cent of recipients are not. The organization does not make observance an issue, Anhang said.
“To me a Jew is a Jew is a Jew,” he said. “If a Jew needs and they’re on the list then I help them find a kidney and that’s the way most of my donors feel also.”
But Anhang points out there are not enough Orthodox Jews to help everyone on Renewal’s growing list. “I need the whole Jewish community in Toronto to step forward and help these people on the list.”
Anhang has been deeply touched by the plight of the people on Renewal’s waiting list who may be in pain, have to quit work, and sometimes die as they wait for an organ.
“I’ve been blessed with very good health in my life. I’m a very religious person, and I believe if one is blessed with something, one is meant to share it,” he said. “One way I can share my health, I can give someone life by donating a kidney to them.”
For more information about Renewal Canada, call 416-628-7633 or email [email protected]