What it's like to wait for a lung transplant during the COVID-19 pandemic

When Lindsay Forsyth Brochu was put on the waitlist for a double-lung transplant back in March, she hoped it would be a couple of weeks before she got the operation she so badly needs.

But, she was put on the list the day after the province suspended most surgeries due to the COVID-19 pandemic, and almost two months later, she's still waiting.

Forsyth Brochu, 31, is one of many Ontarians who've had operations delayed so the health-care system could cope with the novel coronavirus. She's optimistic now that the provincial government has outlined its plan to resume some surgeries — a process that is being managed at the regional level under strict criteria. 

She has pulmonary hypertension, which is a rare and potentially fatal disease that affects the arteries in the lungs, hindering the flow of blood and oxygen to the heart.

"It's been a journey and we're adapting the best we can to it," she said. "That's all anyone can really do."

She first noticed symptoms, including shortness of breath, while hiking on vacation in 2016 and was diagnosed two years later when she was just 29. 

Those symptoms transformed a woman who loved to dance, hike and walk her dogs into someone who must lead a sedentary lifestyle of reading, baking and cross-stitching.

"Now climbing the stairs is a task and a half," she said. "Bending down to pick something up or tying my shoes, I get very short of breath, very light headed. I have weakness in my legs."

Forsyth Brochu eventually made the difficult decision to leave her job as an X-ray technologist and went on disability.

In mid-March, she left her home in Almonte, Ont. to stay with her parents in Beamsville to be closer to Toronto General Hospital where she'd eventually get lung transplant surgery.

She was put on the waitlist on March 17 and was told it may take about a month before the right pair of lungs would become available. But since then, almost all surgeries stopped and more people need a transplant.

"It's disappointing," she said. "The list is just growing and now the surgeries are going to be backlogged when everything does start up again." 

Surgeries backlogged, organ donations decreased

At the University Health Network (UHN), surgeon-in-chief Dr. Shaf Keshavjee said all surgeries are significantly backlogged.

Keshavjee, who is also the director of the Toronto Lung Transplant program, said only about a quarter of operations at Toronto General and other UHN hospitals were being performed after the province suspended most surgeries to increase capacity for potential COVID-19 patients. 

"[We were] basically just treating patients who would be harmed if their operation was not done within 14 days," he said, which included a few urgent lung transplants.

Lung transplants opened up for patients in the second category of urgency last week, but Keshavjee said it's unknown when all lung transplants can go ahead. He said prior to COVID-19, the waitlist was between three and five weeks, but it's difficult to tell how long it is now.

His main concern is the estimated 50 per cent decrease in organ donations across the province since the pandemic began.

"We're going to have less to choose from. People will end up waiting longer, that's for sure," he said. 

Ontario's donation and transplant agency, the Trillium Gift of Life Network, also said donations have decreased because of the pandemic. 

"There has been an overall decline in referrals and donors, in part due to decreased transplant activity and lower ICU volumes of non-COVID cases," the agency said in an email. 

Of the 1,647 people waiting for organ transplants in Ontario, 54 of them are waiting for lungs and 25 people have been added to that list since the pandemic, according to the agency.

Stress and fear, yet optimism

The stress of staying healthy during COVID-19 coupled with the uncertainty of hospital backlogs is taking a toll on those living with the disorder Forsyth Brochu is fighting, said Jamie Myrah, the executive director of the Pulmonary Hypertension Association of Canada.

"It just becomes that much more heightened," she said. "[Especially if] a delay to something like a transplant could be the delay of a life-saving surgery," she said.

Myrah said there are approximately 10,000 Canadians with the condition in Canada and she knows of several other cases in Ontario similar to Forsyth Brochu's.

Forsyth Brochu said her condition worsened during the pandemic. She started on the waitlist as a low-priority patient, but now she's in the most urgent category. 

"It's scary," she said.

"It's exhausting because you don't know when those lungs are coming in," she said. "Knowing your condition is deteriorating, you don't know when it's going to get worse and if you're going to get those lungs in time."

But being in the most urgent category means Forsyth Brochu should be near the top of the list to get the surgery. She's optimistic that will be in the next few weeks. 

She said what she's looking forward to the most is dancing again. And she'd like to one day start a family.

"Things can only go up from here," she said.

"As I recover I'll get those little victories back and hopefully be able to live a full life."