'It gives me hope': Alberta organ donor rate hits new high

Getting on the official list for a liver transplant brought relief for Tyler Wiebe, but also some anxiety.

"There's a lot of emotions you go through," the 29-year-old Calgary resident said of his experience last year with the organ transplant system.

"As soon as you actually are on the list, you're kind of always on edge that the phone call's going to come."

• From January: 8% of Albertans registered as organ donors

Wiebe had been suffering from escalating symptoms of primary sclerosing cholangitis, a chronic liver disease that had left him constantly exhausted, frequently itchy, increasingly confused and repeatedly in hospital.

"I was basically child-like," Wiebe said. "My wife had to take care of me."

Receiving a donor liver was the best hope to save Wiebe's life but the surgery would also bring with it a small but significant chance of dying on the operating table.

But he didn't hesitate when he got the call, which came just over three weeks after his name was added to the waiting list. The surgery was a complete success.

Such a short wait is "pretty much unheard of," Wiebe said, and he counts himself extremely lucky to have had good timing and a rare blood type.

"People wait one or two years — some people wait more than five years — for a transplant," he said.

Wait list long, but shrinking

Indeed, hundreds of Albertans are still waiting for transplants of their own, but the list has been getting shorter, year by year, for the past half decade.

There were nearly 800 people waiting in 2012 but, by the end of 2016, that was down to about 600.

The shrinking list comes amid increases in both the number of organ donors and the number of transplants performed using the organs they donate.

Alberta has historically lagged behind other provinces in organ donation rates but, according to the latest data, it's starting to close the gap.

There were 70 deceased donors in Alberta in 2016 — the most on record for a single year.

That boosted Alberta's rate to 16.5 deceased donors per million residents, bringing it within striking distance of the 2015 national average. (Full national data for 2016 isn't yet available.)

Dr. Jim Kutsogiannis, medical director of Alberta's human organ procurement and exchange program, believes there are several factors behind the increase, but one of the biggest is a shift in mindset on organ donation.

"Having done this for 20 years, I've certainly noticed a huge change in public awareness and public attitudes to the point where, more often than not now, the public is driving this," he said.

"They're aware. They're bringing it to our attention as health-care professionals."

While many families still balk at the prospect of organ harvesting, Kutsogiannis said doctors are now encountering the opposite scenario, too — families who are disappointed when they find out their deceased loved ones are, for one reason or another, ineligible to become donors.

Big jump in Calgary donations

Kutsogiannis noted the bulk of the latest increase in deceased organ donors came in the Calgary health region, where the rate jumped by 70 per cent last year.

"Part of that was related to their implementation of a second type of donation procedure which doesn't require the patient to be brain dead," he said.

That type of procedure, which occurs just minutes after a patient is taken off life support and their heart stops, was first performed in Canada more than a decade ago, Kutsogiannis said.

Known as "donation after cardio-circulatory death," the procedure has been performed since 2009 in Edmonton, where donor rates are higher, but was only adopted as a policy in Calgary in 2016, he said.

"From the major jurisdictions in Canada, Calgary has been the latecomer to this," he said.

"In Calgary, it took them longer, I think, just culturally in their critical care group — both physician and nursing — to agree to go forward with this."

The change is likely a big factor in Calgary's sudden increase in donors, Kutsogiannis said, but not the only one.

In addition to increased public awareness about organ donation, he said, there have also been improvements in the ways that potential donors are identified in emergency rooms and ICUs, better management of the patients and more effective organ exchange programs between provinces.

More overdose deaths

Another factor physicians and researchers are keeping an eye on in Alberta is the impact of the fentanyl crisis, which could be driving up the number of deceased organ donors.

Deaths from drug overdoses accounted for eight of the 70 deceased donors in the province last year, which is up from four the previous year and five in each of the two years before that.

As a proportion, though, there hasn't been a big increase; overdose deaths have accounted for between eight and 11 per cent of deceased donors annually since 2013.

Dr. David Landsberg, a leading transplant specialist in British Columbia, said earlier this year that a full 25 per cent of the deceased donors in that province so far in 2017 died as the result of overdoses.

British Columbia saw 914 overdose deaths last year, many of them linked to fentanyl, a potent opioid.

In Alberta, by comparison, there were 443 overdose deaths recorded in 2016, with 68 per cent of them linked to fentanyl or another opioid.

Dr. Lori West, director of the Alberta Transplant Institute, said it's too soon to draw similar conclusions from the deceased donor data in this province, but it's something that doctors and researchers are watching closely.

"It's certainly come up in conversations at meetings and conferences and so on, so I think the data will be very interesting to everyone as it sort of evolves," she said.

"We may not know for a little while. It will be interesting."

Dying of a drug overdose does not automatically disqualify a person from being an organ donor, West noted.

"It would have to be looked at in the context of what the circumstances were regarding the drug overdose and what else would go along with that," she said.

"Each case has to be looked at individually, to look at potential risk of a possible recipient of those organs, and that's true of all organ donations."

'Simple act can save so many people'

After Wiebe received his liver transplant, he started volunteering with the Canadian Liver Foundation and, in February, he joined its staff.

As the organization's Alberta development co-ordinator, he works with people who find themselves in a situation similar to the one he was facing just over a year ago.

"I really like that I'm able to be a voice of experience on the phone," he said.

"We get lots of calls from people who are currently suffering from liver disease and they don't really know where to turn to or what to do. So at the very least, when they call, I can give them some hope."

Wiebe said he's also encouraged by the latest statistics on organ donation in Alberta.

"I think it's fantastic that the rates are improving, that more people are donating and that more transplants are happening," he said.

"It gives me hope that these transplants will happen for everyone that I come across, too."

If there's one message he had for everyone else, it's to make your intentions about organ donations known.

"There are so many people out there suffering from various diseases that need everyone out there — the whole public — to help out by signing their donor card or by registering online," he said.

"Because you never know what could happen, and that simple act can save so many people."