It's a challenging road to recovery for Londoners suffering long COVID

When Londoner Christina Lepore contracted COVID-19 in December, she was expecting a sore throat and cough. 

Instead, the 52-year-old single mother says she's been bedridden for five months, unable to walk or eat alone, and is now dependent on a walker and wheelchair.  

"My entire world has been flipped upside down," said Lepore, who was hospitalized for 11 days with COVID-19 complications and lost 50 pounds due to vomiting.

She is one of 1.4 million Canadians living with long COVID, navigating a long road of persistent symptoms and need for healthcare supports. Yet, Ontario's lack of a long COVID strategy has come under fire, with critics stating some long COVID clinics are at risk of closure and could lead to patients having little or no assistance.

In London, St. Joseph's post-acute COVID-19 program leaders say they're continuing to see patients, and are working with the Ministry of Health to secure long-term funding. 

Nearly 15 per cent of people who've contracted COVID-19 say they experienced lingering symptoms three months or more after their initial infection. Among adults with longer-term symptoms, 47 per cent had them for one year or longer, and 21 per cent reported symptoms limited their daily activities, according to the Public Health Agency of Canada. 

Lepore, who once exercised freely and pursued creative writing, now faces fatigue and brain fog that puts everyday tasks out of reach, she said. 

"All of these things that seem incredibly easy have become monumental tasks," she said. She now needs a personal support worker to help her shower and get dressed — and is on an unpaid leave from her job in mental health care. 

While her family doctor has been "wonderful," the road to access much-needed supports has been "incredibly frustrating," Lepore said. "I'm really shocked by the lack of information."

'It's still greatly affecting our community'

Because the condition is still very new, diagnostic pathways are still being uncovered, which can lead to frustration for patients, said Dr. Mike Nicholson, respirologist with St. Joseph Healthcare's post-acute COVID-19 program in London.

"It's frustrating for people to feel like they're not getting better, but also having no obvious answers," he said. 

Through his work, Nicholson has witnessed the extended impacts of long COVID on patients. 

"It's still greatly affecting our community for the last couple of months, even despite the theoretical COVID numbers going down," he said. "We're still seeing the community transmission, and therefore we're seeing a lot of people still unfortunately have long COVID symptoms, despite not being hospitalized."

The long COVID patient program opened in London January 2021 and operates between St. Joseph's Hospital and Parkwood Institute. The team includes physicians from respirology and internal medicine, a nurse practitioner, a physiotherapist, occupational therapist, speech-language pathologist, and social worker.

Since then they have served a total of about 455 patients, with approximately 3,300 total visits. 

Patients are experiencing fatigue, shortness of breath and brain fog along with gastrointestinal symptoms like poor appetite and diarrhea, Nicholson said. Others have muscle and joint issues.

While some start to feel better with treatment, others face a longer trajectory on their path, he said. Some who find success in the program end up needing to come back.

"The journey overall is two steps forward, one step back," said Mariah Zalitach, a nurse practitioner at St. Joseph's post-acute COVID-19 program.

"They can have some periods where they're feeling good, but we also find that any sort of illness can make their symptoms worsen," Zalitach said, noting there are still patients in the program who started at the initial launch in 2021.

"The need is still prevalent," she said.

For those suffering from the effects of long COVID like Lepore, the need is not just medical, but personal.

"I think we fail to recognize that your neighbour or your friend or your sister or your mom is going to be one of those....going to have really severe complications," she said.