Crying out for the ultimate gift
Some of those in desperate need of an organ donation advertise on billboards and social media — but finding people willing to help is just the beginning
THOSE COSTCO DRIVING TO in Ancaster or up to Lime Ridge Mall, are now aware that, while some people need bulk waffles or fragrant body wash, others need a new kidney.
In this instance it’s Helio Silva, 40, who has lived with kidney disease 17 years, and whose name graces several local billboards along with his phone number, and: “Husband and father of two in need of a kidney/ blood type O.”
Meanwhile, you won’t find Sarah Jha’s name on a billboard, but she has a Facebook page titled “Sarah’s Liver Disease,” where she writes: “Hi there! I’m Sarah Jha, and I need a new liver.”
Publicly advocating for such a life-altering gift is a symptom of both the acute need for organ donation, and the avenues available to express it.
Physicians whose expertise is organ donation say public advocacy like this is positive.
“It’s a reasonable thing to do ... It increases the general awareness of organ donation and the severe shortage of donors,” said Atul Humar, director of the transplant program for the University Health Network at Toronto General Hospital.
“And if someone can attract a living donor, it can remove them from the waiting list for a deceased dona--
tion, freeing up an organ for someone else. And of course it benefits the person who can receive the transplant in a timely manner.”
He added that the practice was declared ethical in guidelines developed by the Canadian Society of Transplantation, so long as it complies with Canadian law and does not involve “monetary gain.”
Money wasn’t gained by anyone in the case of the kidney billboard: Silva says the outdoor advertising company has featured the poster free of charge after his wife, Patricia, recently contacted the company and asked if they would help.
“They agreed to do it, and we said that’s awesome and thanked them for their generosity,” he said, adding he doesn’t know how long the signs will be up.
Not everyone in need of an organ donation has the initiative, or good fortune, to have billboard space dedicated to their cause. Some may not have the wherewithal to advocate on social media, either, or get their story in a newspaper or on TV.
“Some have more access to media or other resources, it’s true,” said Humar. “But that doesn’t disadvantage those on the waiting list (for organs), because it’s not taking the organ of a deceased from the pool, it’s freeing up a spot on the list for anyone who is waiting.”
There are two types of organ donation:
One, a deceased donor, when that person is registered to be an organ donor prior to death.
Two, a living donor, typically someone who is a family member or close friend of the recipient. And when someone advocates widely to receive an organ from a stranger, it’s called a publicly solicited donation.
While there is a patient waiting list for organs that come from deceased donors, there is no waiting list for organs coming from living donors. A living donor can choose to donate to anyone they wish, provided they are found to be a suitable match and fully understand the risks and benefits.
Many of Sarah Jha’s family and friends have volunteered to donate a portion of their liver to her before it’s too late, but none were a match.
The 36-year-old mechanical engineer, who works at Dofasco, was diagnosed with chronic liver disease in 2013. She said her liver is slowly withering away.
She advocates on her Facebook page, and is also giving a presentation to raise awareness about liver disease and her quest. The presentation is Saturday at the Heron Creek Yoga and Fitness Centre in Ancaster — 385 Jerseyville Rd. W. — at 10 a.m. and again at 11:30 a.m.
She’s unable to work because of fatigue and wishes she had more energy to devote to her young daughter, Mila, and husband, Vikas. She said other side effects of her illness include osteoporosis, Crohn’s disease and fluid retention in her abdomen.
The positive news for liver donation is that if a candidate donates two-thirds of their liver, said Humar, it will grow back entirely within a sixto 12-week period, both in the donor, and the recipient who receives that portion of the organ.
“It’s a remarkable thing,” he said, adding they only do living donation from extremely healthy people because they do not want to put donors at risk.
A successful national program for living donor transplants is called the paired exchange program, that is primarily used for kidneys, and more uncommonly, livers.
This is the route Patricia Silva has taken to help her husband find a kidney. She is not a match for Helio, but she has registered with the paired kidney exchange program at St. Joseph’s Healthcare, so that if someone needs a kidney elsewhere in the country, she will donate one of hers, while someone else also registered who matches Helio would donate to him.
St. Joe’s has done 25 such transplants in the last nine years; it currently has 48 people registered looking for a donor.
“The program is a national treasure,“said Darin Treleaven, director of the kidney transplant program at St. Joe’s. He said 550 transplants through the program have been done nationally to date — “that wouldn’t have happened otherwise, not from a living donor, without this program in place.”
Using living donors for organ transplants is supported by Trillium Gift of Life Network, but a spokesperson added that their priority is increasing the pool of people who have registered as organ donors when they die.
Helio Silva is hopeful the exchange program will find him a kidney, but he also knows it could take a long time, since the road from finding a possible match, to that donor’s kidney being transplanted in his body, is an uncertain one.
The will to help is clearly out there: Patricia has received about 60 calls since their billboard went up, some just offering their best wishes but many others offering to donate.
The offers have not gone much beyond that, and Silva said he understands. Giving one of your kidneys to a person you don’t know is a life-changing decision, and involves a lengthy testing process to see if you’re a match.
He is still working, as a project manager for a construction company, but his energy is always running low. He wants to avoid entering the world of dialysis. His utopia, he said, is finding a new kidney before it comes to that.
His family lives on the Mountain. They have a 15-year-old son and 14year-old daughter. He tries not to think about worst-case scenarios, does not dwell upon dying young.
“I’m not that type of person, you can’t have that mindset … My wife does enough worrying for me.”