'People cannot underestimate' COVID-19, say long-haulers feeling symptoms months later

As the economy reopens and thoughts turn to patios and indoor shopping, some who suffer from long-haul COVID-19 are warning not to let guards down against a virus that has left them with debilitating symptoms — months after their diagnosis.  

"We have a new variant in town, and people are out there like it's gone and everything's safe," said Jane Ertel, 62, of Kitchener, Ont. "It's driving me crazy."

Ertel was admitted to hospital in November for a gall bladder issue. She tells CBC Kitchener-Waterloo she tested positive on Dec. 5. An outbreak on the hospital's sixth floor ward was declared the same day and lasted about a month.

Ertel said that before her diagnosis, she was a non-smoker with no pre-existing lung conditions. Today, she has roughly 60 per cent of her prior lung capacity and is "short of breath constantly."

"People need to recognize this doesn't go away just because you're 'resolved,' as they call it."

Here are the stories of others also living with the after-effects of COVID-19:

Kari Gray

Kari Gray, 48, fell ill around the same time as Ertel. Gray works in a hospital and got a positive COVID-19 test after being redeployed to a facility in an outbreak last November.

By early December, she was in the emergency room with severe shortness of breath and chest pain. She was sent home that same day, but has had symptoms ever since. 

"I have all-over body aches, extreme fatigue, brain fog," said Gray, who lives in St. Paul's Station – about a 10-minute drive from Stratford. Gray noted the cognitive effects are also significant — she often struggles to find words, can't multitask and only recently felt comfortable driving again. 

"It's difficult to function on a regular basis during the day."

Jackie Loree

It's been a 15-month slog for Jackie Loree, 61, whose COVID-19 diagnosis dates back to the first wave of the pandemic. Her symptoms have included fevers, muscle and chest pain, gastrointestinal issues, fatigue and a blood clot in her leg.

The symptoms came as a shock for a woman who used to work 12-hour nursing shifts, and swam and rode her motorcycle on days off. She is not yet back to work full time and can only exercise about half of what she used to. 

"That does tell you how powerful this virus really is; it can have detrimental effects even if you're in reasonable health," said Loree, who lives in Guelph and works in Kitchener.

Doctor says root cause unclear

It isn't clear, yet why some COVID-19 patients have symptoms that persist long after diagnosis, said Dr. Angela Cheung.

Cheung, an internal medicine specialist and scientist at University Health Network in Toronto, is co-lead of the COVID-19 Prospective Cohort Study, which is looking at one-year outcomes in more than 1,300 patients who had COVID-19.

But while scientists aren't yet sure of the root cause, Cheung said initial research shows persistent symptoms are fairly common.

"We conducted a systematic review and found that a fairly large percentage of patients still continue to have symptoms," said Cheung. The review was released earlier this month in pre-print and has not yet been peer reviewed.

Finding treatment

The newness of COVID-19 and relative lack of information can make living with long-haul symptoms all the more frustrating. 

Loree noted she's been through a battery of tests to get to the bottom of her symptoms — but they always come back negative.  

"Where does a physician start with that if everything looks fine on paper?" she said.

Gray said she's being treated as a concussion patient in physiotherapy, because it's the condition that most closely resembles her cognitive COVID-19 symptoms. 

"Everybody's doing their best for me, but it's been a struggle."

Ertel's ICU doctor got her into a pulmonary rehab program for patients with lung disease, though she believes she's the only current participant there due to COVID-19. 

"I personally am very lucky to get the support I'm getting, but I'm the first person and the only person I know of, that's in this program," she said. "So that means everybody else is just trying on their own, and that's scary."

Although she's grateful to be a part of it, she's part of a Facebook support group for long-haul COVID-19 patients and is aware of others who struggle to get care. 

Stay vigilant

Cheung said she believes treatment for long-haulers will improve as more knowledge emerges about the novel coronavirus. She also hopes to see a more coordinated network of specialized clinics for long-haul patients set up in the months to come. 

For now, the three women who spoke with CBC Kitchener-Waterloo urged people to get vaccinated, follow precautions and remember how serious a COVID-19 infection can be.

"I never expected this would happen to me," said Loree.

"This little virus that none of us can see has tremendous power and people cannot underestimate it."