More living organ donors needed, doctors say

After donating one of her kidneys to a stranger five years ago, Marianne Janz says she felt better than she had with a full set. The 64-year-old started taking part in the annual Kidney March to Calgary — a three-day, 100-kilometre walk that required lots of training.

"After the transplant I felt wonderful. I had lots of energy," Janz said, which is why she's disappointed that the number of living organ donors in Canada has dropped despite a record number of organ transplants.

In all, more than 2,900 transplants were performed in 2015 — the highest one-year total in the available data — from more than 1,300 donors, both living and deceased, according to the latest figures from the Canadian Institute for Health Information (CIHI). 

That puts Canada on par with countries like the U.K. and Australia, but still below leaders like Spain and the U.S.

But the good news stops where the long wait lists begin. The demand for organs, especially kidneys, still far outstrips the supply in most of the country. Even though there were nearly 1,300 kidney transplants last year, there were still more than 2,800 people waiting for one at year's end. 

"Waiting lists have been going up along with number of transplants," said Michael Terner of the Canadian Organ Placement Register. "The increase in deceased donors don't seem to be helping."

More Canadians are suffering from kidney disease, mostly driven by diabetes, according to CIHI.

But unlike some patients, who can wait up to three years for a transplant, Tommy Rabbitskin, of Montreal, has a new kidney thanks to a living donor — his younger brother, Wally.

"I saw him when they brought him out, and the doctor told me that my brother did very well and that he gave me a beautiful kidney," Tommy said from his bed at the Royal Victoria Hospital.

Wally said giving up one of his kidneys was a small price to pay to save his brother's life.

"It's not just that one person — it's the whole family that's really happy with what I did," Wally said, adding that the only pain he experienced was immediately after the procedure. "Even though maybe people are afraid something will happen to them, we have doctors that are really good and helpful and give you all the information that you need. It's really something good we can do to help people."

Why are there fewer living donors?

Transplants from living donors have an added advantage: they typically last longer and have fewer complications, as the donors tend to be healthy individuals. 

Deceased donors, on the other hand, could have pre-existing health problems that led to their deaths.

Janz decided to be a donor when her brother-in-law needed a kidney, but their blood types didn't match. So she signed up to a paired exchange program that matches donors with patients anonymously.

"It wasn't a hard decision," she said. "I was already committed to donating to my brother-in-law. When he didn't need my help, I knew there was someone out there in the same situation."

But she can understand why some people would be hesitant to donate an organ.

"It's a big commitment," she said. "You have to take time off work, be in the hospital for lots of tests, and people might think their income will suffer while on sick leave while they recover."

Bridget Grounds says she's lucky to be in the position to help someone by donating one of her kidneys.

"I'm very fortunate to be financially stable, healthy, I have a good support network and great partner," said the 54-year-old Ottawa woman who recently completed a preliminary battery of tests: blood and urine exams, ECGs, chest X-rays and abdominal ultrasounds.

If she passes those, she has to submit to another round of tests, mostly to ensure she is psychologically fit to undergo the arduous process.

"You're losing a part of your body and you'll have to recover for four to six weeks — they want to make sure you can cope with it," she said.

Quebec's ambitious plan

Janz and Grounds aside, donations from living donors dropped or remained flat nationwide from 2015 to 2016 everywhere but the Prairie provinces. 

Alberta's success can be traced to the creation of an online donor registry in 2014, which started showing results last year.

"In addition, social media posts shared by donor families and recipients, and increased media coverage are having a positive impact on increasing donor rates," said Rob Gereghty of Alberta Health.

But Alberta is an anomaly in Canada. Ontario recorded a big increase in deceased donations but a drop in living donors, a trend seen nationwide.

Quebec, which has the second-highest rate of deceased donors in the country, has the lowest rate of living donors in the country, at 6.7 donors per one million people. The Canadian average is 15 per million. In B.C., it's more than 20.

The reason is simple, says Michel Pâquet, a nephrologist at the University of Montreal's health centre: Quebec has put a lot of effort into increasing deceased donations but little on living ones.

"It's possible to have a high rate of both living and deceased donors," he said, pointing to B.C., which had the opposite problem but was able to increase deceased donations by focusing attention on the issue.

"If we put in the effort, we can succeed," he said.

Pâquet has been tasked with doubling Quebec's rate of living donations by 2022. A small-scale experiment at one hospital proved fruitful: by dedicating staff to train health professionals and educate patients and families, and ensuring the safety of donors, the hospital more than doubled the number of yearly donors from the time before the experiment. 

Now he's expanding the project to Quebec's five transplant hospitals.

Terner, from CIHI, wants more effort put into educating the public, so that more people understand they can live a healthy and active life with just one kidney.

People like Janz are proof.

"I'd do it again if I could," she said.