Over a year ago, Lisa Tarko caught COVID-19 and ended up in hospital for nearly a month.
The 64-year-old is still living with the lasting effects of the virus every day.
"It really is a struggle," said Tarko, who finds herself among the tens of thousands of Canadians living with post-COVID condition, also known as long COVID.
Now, a team of researchers at the University of Manitoba are trying to better understand how long COVID is affecting Manitobans, and health-care providers here are working to help people with symptoms.
Those symptoms can include can include fatigue and problems with breathing, memory and concentration, the World Health Organization says.
Tarko had to use an oxygen feed before COVID-19 because of severe asthma and chronic obstructive pulmonary disease, or COPD, symptoms. She also used a walker, but only when she went out.
Now, she needs the walker even inside her home. She lives with chronic headaches, fatigue and brain fog.
"I'm not quick to make decisions anymore," Tarko said. "My thought process is very slow now.… It's from the COVID, and I'm tired all the time. I'm fatigued all the time."
Manitoba doesn't track long COVID cases
A recent report from the U.S. Centres for Disease Control and Prevention said one in five COVID-19 survivors there aged 18-64, and one in four age 65 and up, experienced at least one incident condition that might be attributable to their infection.
In Manitoba, a Shared Health spokesperson said the province doesn't track the number people with long COVID — but that's what researchers are now trying to learn.
Dr. Alan Katz, a family physician and health services researcher at the Manitoba Centre for Health Policy, is part of a team using data from Manitoba health records to see whether those with a positive PCR (polymerase chain reaction) test for COVID-19 went on to seek care for symptoms that could be related to long COVID.
"We've really been working to understand the data that's available and to make sure we're getting it right," said Katz. "We don't want to overestimate or underestimate this because it has significant impact on both patients … and health-care providers."
The team is also launching a survey in the coming weeks to collect data from people who tested positive on a rapid antigen test, since the province limited access to the more sensitive PCR testing in Manitoba around the time infections from the Omicron variant of the coronavirus started to surge.
"We can combine the two kinds of information and determine whether there is a difference with regard to Omicron or before Omicron."
Katz expects to be able to start to share findings from the research in the fall.
Planning needed for long COVID response
He said there's been a focus during the pandemic on hospital bed availability and demands on emergency rooms, which are important considerations.
But it's important to recognize that people with long COVID are also going to need care, and not enough is being done to prepare for that, he said.
"There are all kinds of factors that are important to understand so that we can plan and help … provide care to these people who are likely to or have already developed these fairly serious symptoms."
Right now, patients with long COVID or post-COVID-19 conditions are usually managed by a primary care provider who can refer them to specialists when appropriate, according to Shared Health.
At the Misericordia Health Centre in Winnipeg, patients with long COVID are being treated through the pulmonary rehabilitation program and Easy Street, a rehabilitation program focused on developing independent living skills after life-impacting incidents like a brain injury or a stroke.
"Many of our clients come to us because they've had to stop working, they've had to stop going to school, their parenting duties are impacted," said Esther Hawn, an occupational therapist with Easy Street.
She helps patients develop tools and strategies to help them get back to normal, or adapt to a new normal.
She said she works with patients with significant fatigue and "brain fog," or cognitive impairment, after COVID. At any given time, about 50 per cent of her caseload now is people with long COVID.
"The system is working really hard to keep up with the demands but the demand, I think, has exceeded anyone's expectation. So more support for long COVID rehabilitation would be wonderful."
Hawn would like to see more understanding about how long COVID is affecting people, and hopes those with symptoms reach out for care.
Respiratory therapist Laura Zelcer, who works across the hall at the MHC for Lungs rehabilitation program, agrees. She estimates post-COVID patients now make up 15 to 20 per cent of that program's clients.
"I think the biggest thing is getting the word out there, that there are programs that exist," Zelcer said. "A lot of people get referred quite later on after their diagnosis.... The earlier we can try to treat, the better."
Tarko hopes research will provide more answers on how to treat long COVID.
She went through the pulmonary rehab program at Misericordia Health Centre and still does the exercises she learned. She's seen some improvement, she said.
"I work on it all the time."