Eleven years ago, Vancouver resident Heather Cardno and her husband tragically lost their 27-year-old son.
When the doctors at the hospital asked them about organ donation, they didn’t hesitate.
“Yes of course.”
Both his kidneys and his liver were donated to three different people.
Now, as Cardno faces her own chronic kidney disease, dialysis, and searches for a kidney donor, she doesn’t know if irony is the right word but it’s certainly a strange cosmic coincidence.
“I'm in desperate need of a kidney,” she tells V.I.A. over the phone. “I’m down to 12 per cent kidney function.”
Cardno was diagnosed with kidney disease a few years ago after a routine blood test determined that her kidney function was lower than it should be. She was referred to a specialist and was under their care but in 2022 her numbers began to plummet, which she says was "a sudden shock of reality.”
“I put it in the back of my mind for as long as I could and now it's in the forefront,” she shares. “I have lots and lots of tearful moments because I just can't believe this."
This isn't Cardno's first experience with a life-threatening illness. "I'm also a breast cancer survivor," she adds.
Cardno was diagnosed with breast cancer two years after her son died with no history of it in her family. “They caught it early," she says of her cancer, but the kidney diagnosis raises all sorts of unanswerable questions, she says. "There's lots of ‘what the heck?’ ‘Why is this happening?’”
The doctors don’t know what’s causing the kidney disease and again there’s no history of it in Cardno’s family but she is now living month to month awaiting either dialysis or a live donor, whichever comes first.
What is kidney disease?
The fundamental role of your kidneys is to function as filters, cleaning and removing toxins from your blood and helping to balance the fluid in the body. When that system doesn't work, those toxins build up.
When someone is in kidney failure it means they’re at the point where the kidneys are not keeping up with the life-sustaining requirements. Dialysis is a treatment that cleans the blood, taking on the job that the kidneys are no longer able to do. Patients are hooked up to a machine either in a hospital or at home every day or a few times a week depending on the severity of the kidney failure.
The problem with dialysis, according to Dr. Jag Gill, Medical Director of the Kidney Transplant Program at St. Paul’s Hospital, is that while it cleans the blood and sustains people keeping them alive, “it doesn't improve their quality of life very much. They still feel pretty unwell.”
Kidney disease causes swelling, loss of appetite, weight loss, nausea, fatigue, and cognitive fogginess, so he says, “transplants are the preferred treatment for most people.”
With a transplant, a healthy kidney goes into the patient with kidney failure and gives that person all of that filtering capacity back to a level where they feel quite normal.
“It doesn't fully cure kidney disease,” says Gill, “but it does create a substantial improvement in not only someone's quality of life, but also extends life expectancy.”
In May 2022, Cardno, who is 63, had to leave work and is now on disability. She has lost 60 pounds in a year and none of her family members are eligible to donate. “I have a very small family,” she says - just her and her spouse. "It's just the two of us, we want to make sure we’re both around for each other." Her husband is disappointed he isn’t able to donate a kidney but is helping Cardno search for a live donor.
Cardno isn’t able to get a spot on the waitlist for a deceased donor because she hasn’t been on dialysis and her kidney function isn’t low enough, yet. When the time comes, she’s been approved for at-home dialysis.
When asked what a new kidney would mean to her, Cardno responded: “the world, it would absolutely mean the world.”
“It would mean I would be able to do everything I've always been able to do. I could pick up travel as much as I want. I could go back to work if I want…it gives you a second chance at life,” she says.
What it takes to be a live organ donor
Live organ donors cannot be coerced or pressured into donating, they have to voluntarily step up and offer to get tested. People looking for donors aren’t able to ask people, they can only tell their story and hope that someone will come forward. Carno has tried Facebook posts, emails, and she and her husband are even considering having brochures or T-shirts made.
Heather Johnson from the Kidney Foundation of Canada says that a woman in Saskatoon had success advertising on her car.
Live organ donation is obviously something that requires serious consideration but there is also a tremendous amount of infrastructure and resources available to support those considering it.
Johnson explains that the Living Organ Donor Expense Reimbursement Program helps financially aid people across Canada who want to donate to people in B.C. or the Yukon, including subsidized furnished recovery suites. “We don’t want any financial burden to stop someone from being a live donor,” she says.
In addition, she says, anyone who donates a kidney but then needs one themselves later in life will be bumped to the top of the waitlist.
“There’s no messing around when people make the altruistic life-saving choice,” she says. If someone comes forward to donate a kidney for a specific patient but isn’t a match, the Kidney Paired Donation Program is able to match them to someone else in need as well if they chose.
There are two levels of matching, explains Gill, blood type and tissue type. Blood types don't need to match necessarily they just need to be compatible whereas tissue matching is a little more complex.
Over our lives, if we're exposed to something that's foreign, for instance a blood transfusion, our immune system will produce antibodies at a protein level even if it's the same blood type. "That doesn't cause any harm to anybody in the moment," says Gill, "it's just what the immune system does. But in the context of a transplant that person has now been sensitized, because they have all these antibodies against these proteins."
"So when someone says, 'I want to get a kidney from someone,' they have antibodies against the protein that that person has on their kidney and they can't donate, that's not a match." Sensitization also means it's harder for someone to get a match.
What to consider when donating a kidney
“Donation is something that can be done quite safely,” says Gill. “It can be done quite efficiently, and it can really change people's lives.”
The vast majority of living kidney donors donate one of their kidneys and go on to live a full normal life, he says. Due to rigorous vetting, selected donors don’t experience impairment “because the whole point is you want to donate your kidney and move on with your life.”
He thinks the main message to bear in mind when considering organ donation is that transplants are “quite transformative for people's lives.”
There is a shortage of donors and the average person on a waitlist for a deceased donor transplant is anywhere from two to five years depending on blood type and matching ability and during that time they have to continue dialysis.
He encourages anyone thinking about it to call experts that can give accurate information and assures that at any point someone can say, 'actually this isn't for me' and that is confidential.
"We actually keep asking to make sure that people are still okay with moving forward," he says.
Anyone who is willing to be considered as a potential donor should contact the Vancouver General Hospital Living Donor Program directly (604-875-5182), and indicate the name of their desired recipient. For example, 'Heather Cardno.'