Stacks of cardboard boxes line the wall of a spare room in Matthew Laferriere’s bungalow in Winnipeg’s Windsor Park neighbourhood.
Each night, the 33-year-old takes a plastic bag of fluid from one of the boxes and loads it into his home dialysis machine.
After nearly six years of using the life-saving device, Laferriere’s wait for a kidney transplant was set to end in 2020. He’d found a living donor, been cleared for the procedure and only needed the hospital to schedule the operation.
Then the COVID-19 pandemic hit.
“[I’ve gone] from being three or four months away from a kidney transplant to a year and a half later still in the same place I was before,” Laferriere said. “Except feeling a lot worse.”
When the pandemic delayed his operation, his condition worsened. Last January, his medical team told him his heart was no longer strong enough to tolerate the kidney transplant.
He’d need a heart transplant first.
“That was my window,” Laferriere said. “Nine months worth of delays and my heart failed.”
It’s taken Laferriere a year to do the tests, diagnostics and appointments for his heart transplant.
Because Manitoba does not perform heart transplants, he’s also waiting to hear from Toronto’s Peter Munk Cardiac Centre about whether he’ll be added to the list of candidates for a new heart.
Transplant programs across Canada were paused, including Manitoba’s, at the start of the pandemic. While Manitoba’s resumed in May 2020, it was paused again during the pandemic’s third wave in November of last year.
It started up again in February, but staff shortages, surgery backlogs and longer waits for diagnostics have left the transplant program playing catch-up.
Living organ donation last year was at its lowest level in a decade across the country, according to the latest numbers from the Canadian Institute for Health Information.
They show the rate in 2020 was down 21 per cent from 2019.
It’s been particularly hard for living kidney transplants, says University of Alberta transplant surgeon Dr. Max Levine.
Kidney transplants are sometimes seen as elective because they’re scheduled in advance, making them vulnerable to the chopping block when surgical backlogs ramp up.
Plus, both kidney candidates and their donors must undergo evaluations to determine if they’re healthy enough for surgery. Those medical assessments can take months at the best of times, but the pandemic has meant longer waits.
Levine says a person may be eligible for transplant one month but ineligible six months later.
“By delaying [transplant] by months, you’re increasing a percentage risk of mortality over that time,” he said.
That’s because while dialysis can keep a person alive, it “does not keep them vitally well,” he said.
It’s hard to know how dangerous a delay will be for a kidney recipient, but on an annual basis there’s a 15 per cent risk of death for people on dialysis, Levine says. The longer the patient is undergoing treatment, the greater the risk.
“My biggest concern with kidney transplant in particular is that we’re going to have patients dying unnecessarily, waiting for a transplant or suffering some sort of complication,” Levine said.
The leading cause of death for people on dialysis is related to cardiovascular disease or heart attacks.
Kidney recipients see long waits
Thom Gross received his first kidney transplant a decade ago. Now awaiting a second transplant, he says the process is very different.
The Winnipeg middle school principal says there were concrete timelines for his last transplant. This time, there are “hopeful dates.”
He was told he would have his kidney by now, but his surgery hasn’t been scheduled and his donor hasn’t even begun their evaluation.
“My donor is not tested and that’s because of the backlog, plain and simple,” Gross said.
He says doctors and health-care workers he’s spoken with are doing their best but are stretched thin dealing with COVID-19 patients.
On average, Manitoba has 55 living donor pairs in progress at any given time, but the length of each wait depends on what medical assessments are needed and when surgeries can be scheduled, the provincial government said in a statement.
Blood tests, abdominal ultrasounds, psychiatry consults and cardiovascular assessments can all be part of pre-transplant evaluations for kidney recipients.
With mounting backlogs in Manitoba’s health-care system, some of these procedures have lengthy waits. The ultrasound backlog was 24,892 people in October, according to estimates by the advocacy group Doctors Manitoba. There were just 15,792 people on the waiting list for ultrasound imaging in October 2019.
The province says it tries to prioritize assessments for transplant recipients and donors when possible.
Dr. Peter Nickerson, the medical director for Transplant Manitoba — the Shared Health organization responsible for donation and transplantation services in the province — says Manitoba fared differently from the rest of the country because of a delayed first wave.
Whereas national living donor transplants were down by 20 per cent in 2020, Manitoba initially kept on track, he said.
But “we’ve been slower to get our backlog back up again because of the burden on the health-care system” during the second and third waves, said Nickerson. “Quite frankly, the system was overwhelmed with COVID patients.”
He says his organization predicts the number of kidney transplants will have halved in 2021, from 60 transplants a year to just 30.
Higher vaccination rates could help ease the burden on the health-care system and help transplant programs catch up, he said.
On Dec. 8, Health Minister Audrey Gordon announced some details about a task force to tackle Manitoba’s surgical and diagnostic backlog.
But a timeline hasn’t been given for when the backlog will be cleared, and the quickly spreading Omicron coronavirus variant is expected to put even more pressure on hospitals in the coming months.
Levine says catching up on the backlog of patients waiting for transplants will take a concerted effort at all levels, from government to hospital administration to front-line workers.
“It doesn’t matter how you slice it, there’s only so much to go around,” he said. “Just putting a stop to things for a period of time is creating a nearly insurmountable backlog.”
Gross says while the delays are daunting because he’s feeling unwell, he’s encouraged by the new task force.
Laferriere isn’t as optimistic. He says he thinks it’s too little too late.
He can’t stay on his feet as long as he used to without head rushes and dizzy spells.
For now, all he can do is wait and let his bedside dialysis machine do its work while he sleeps.
But the idea of undergoing an operation where he won’t have a beating heart keeps him up some nights.
He says he tries not to dwell, and checks in with his transplant co-ordinator every week to get updates. Her response is encouraging, Laferriere says.
“[She tells me], ‘Keep being a squeaky wheel. Never, never feel like you’re a burden to us — you’re always our priority,'” he said.
“It’s just that they don’t have the bandwidth anymore.”