Recovered, not better For those suffering from long COVID, life-altering symptoms can continue for months; experts say further study is imperative
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Hey there, time traveller!
This article was published 16/04/2021 (714 days ago), so information in it may no longer be current.
It started with a pain in her ribs.
On the morning of Monday, Dec. 7, Katie, 33, got up, worked out and went to work. But later in the day, when she sat down to do some sewing, she felt the pain on her right side, just beneath her sternum. After she went to bed, the pain got progressively worse.
She thought she might have dislocated a rib. She did not think she had COVID-19.
“I didn’t have any other symptoms; I could still taste and smell,” Katie, who asked to be identified just by her first name, said via Zoom in early April. “I didn’t have a fever, I wasn’t coughing. But what I did still have was that rib pain. And because the pain was so severe by this point, it actually made it difficult for me to take a deep breath. So based on that lone symptom, I decided that I should go get tested.”
Katie thought she was acting out of an abundance of caution, and planned to get an X-ray for the rib. But when she checked online for her COVID-19 results on the morning of Dec. 10, there it was: a big red plus-sign. She had tested positive for the virus.
“I remember going to say goodbye to my dogs, because, literally, the thoughts that run through your mind are like, ‘Am I going to die? Am I going to go into the hospital and am I never going to come out?’” – Katie
“It was a shock,” she says. “I still felt that rib pain, but I truly did not think it was COVID. I still had no fever, I still had zero other symptoms.”
That said, it was becoming more difficult to breathe. “When I spoke to the various people who you have to speak with when you test positive, one of them said, ‘Based on your symptoms, you need to go to an emergency room that has an ICU,’” she says. “I remember going to say goodbye to my dogs, because, literally, the thoughts that run through your mind are like, ‘Am I going to die? Am I going to go into the hospital and am I never going to come out?’”
Katie says her care at the hospital that day was exceptional, despite it being the crest of a deadly second wave in Manitoba. She ultimately didn’t need to be admitted, but she says things got worse when she got home. She couldn’t stand for more than 30 seconds. It felt like she was trying to breathe through a straw.
She was “listed as recovered” by Dec. 18, which meant she was no longer contagious. But she also wasn’t better. COVID-19 was not through with her.
Now, four months on, Katie is one of many Canadians living with a condition called long COVID. Long haulers such as Katie continue to experience symptoms for weeks or months beyond the expected two- to six-week recovery time (as indicated by the World Health Organization), and after they no longer test positive for the virus. Long COVID can develop in anyone who has had COVID-19, even mild or asymptomatic cases.
It’s a fast-moving, emerging area of study, with more research required to better understand why long COVID is happening, who it is affecting and what the long-term effects will be — not just for individuals grappling with an array of often-debilitating symptoms, but on a societal level as well.
To understand why long COVID is an increasingly pressing public-health priority, all one needs to do is some math. Early research suggests 10 per cent of COVID-19 patients go on to develop long COVID. As of April 15, there were 35,688 lab-confirmed cases of COVID-19 in Manitoba and 1.9 million in Canada. That means roughly 3,500 Manitobans, and 190,000 Canadians, could become long haulers, which would have a tremendous effect on everything from school and workplace policies to the economy. ,
As of Thursday, according to a provincial spokesperson, 9,462 (or 26.5 per cent) of Manitoba’s COVID-19 cases were long COVID cases, patients who were not recovered four or more weeks after being infected with the virus.
Toronto’s Dr. Angela Cheung is the co-lead investigator, along with Dr. Margaret Herridge, for the Canadian COVID-19 Prospective Cohort Study (CANCOV), which is examining early to one-year outcomes in 2,000 COVID-19 patients — 1,000 non-hospitalized and 1,000 hospitalized— and 5,000 family caregivers. Originally, the study was recruiting from the hardest-hit provinces — Quebec, Ontario, Alberta and British Columbia — but Manitoba, Saskatchewan and Nova Scotia have also been included.
“We found that there are patients who still have symptoms — three months out, six months and 12 months out,” Cheung says over the phone from Toronto.
“There’s been a lot of discussion about what long-haul COVID is, and we think of it as more than three months of symptoms. And yes, there are many different symptoms. Some have shortness of breath, especially when they exert themselves. Some have a fast heart rate. Some have brain fog, some have headaches, some have problems with sleeping, especially waking up in the middle of the night. So it is a very diverse set of symptoms — and I’m just telling you about the common ones.”
The study’s preliminary findings have been interesting. “One thing we learned is that it’s often not the sickest people who complain of these long-term symptoms,” Cheung says. “What is surprising to us — although it may not be that surprising, per se — is that even those who are not hospitalized, they can have residual symptoms for months.”
Of course, the pandemic is still active and health-care professionals are still operating in “putting-out-fire mode,” as Cheung calls it. Where she is, in Ontario, the third wave is crashing down heavily.
‘However, I think as the pandemic counts down, we may find ourselves in a situation where there are a lot of patients with long COVID,” she says. “And so it’s important that we start now to study them systematically, and also try to find solutions, right? We don’t do studies just for the sake of doing studies. We are doing studies so that we can be part of the solution to figure out what works best for these patients. How can we get them recovered faster? What we can do to minimize their residual symptoms?”
The goal, Cheung says, is to understand not only the short- and long-term outcomes, but also the predictors of those outcomes. “Because, right now, I can’t tell you who will develop long COVID and who will not,” Cheung says. “I think if we can figure that piece out, we may be able to understand who needs further therapy.”
Katie can’t exercise – the few times she’s attempted, she’s had to take days of recovery. She can’t talk for extended periods of time, relying on a headset so she doesn’t have to project her voice. Prior to having COVID-19, Katie was the picture of health, exercising three to five times a week, sleeping well, eating well.
Katie is still experiencing symptoms. “I continue to have chest pain all the way across my chest. I wake up with it; I have it the whole day until I go to sleep.”
She can’t exercise — the few times she’s attempted, she’s had to take days of recovery. She can’t talk for extended periods of time, relying on a headset so she doesn’t have to project her voice.
Prior to having COVID-19, Katie was the picture of health, exercising three to five times a week, sleeping well, eating well. “One of the doctors that I’ve seen asked me to rate my pre-COVID health out of 10, and I rated myself a 10.”
She believes that early pandemic narratives that focused on negative (and deadly) outcomes for elderly folks and/or those with pre-existing conditions may have “led to people thinking that this virus will not affect you if you’re young and if you’re healthy. And I’m living proof that this virus does not discriminate.”
On Dec. 19, the day after Katie was listed as recovered, another Winnipegger, Lisa Tarko, was taken by ambulance to hospital, where she remained for nearly a month.
Tarko, 63, is a severe asthmatic who is on oxygen. When she got sick in December, she initially thought she had pneumonia. While she was in observation at the hospital, Tarko had a COVID-19 test that came back positive. On New Year’s Eve, she tested positive again. She then moved hospitals, and was at Seven Oaks until the middle of January.
“My oxygen levels were good,” she said over the phone in March. “I was very weak and fatigued, slept a lot. I had headaches, excruciating headaches, but it did not hit my lungs like everybody expected it to. They figured that I would go in and I’d probably end up on a respirator.
“I came home on the 15th of January. I thought I would be back to normal. And that’s not the case at all.”
Now, Tarko has a rash that moves around her body. She could barely walk at first. She has tingling in her hands and feet. She’s dealing with insomnia. “And the brain fog is very bad,” she says. Sometimes, she forgets how to spell certain words.
Tarko’s husband is also recovering from COVID-19 and is her primary caregiver, so the past few months have been hard on both of them.
“When I came home, I was very frustrated and upset, because I thought I was going to just bounce back and be normal and everything would be OK. Then when I realized it wasn’t, I put dates — like, goals to meet. Timelines. And the timelines, I wasn’t meeting them. So, I dropped all that and just thought, I’m just gonna take it day by day. And that’s the only way I can do it is day by day. Because every day is different.”
Celebrating small daily wins — such as walking to the kitchen and unloading the dishwasher — has helped keep Tarko focused on her recovery. In April, she was still experiencing symptoms. Tarko, too, has joined the ranks of long hauler.
Being a long hauler means tests on tests on tests, and co-ordinating appointments.
“There’s a part of you that hopes that there’ll be a glaring abnormality in your tests, because there’s a part of you that thinks if they find something wrong, they can fix it,” Katie says. “Whereas if everything is abnormal, but this might be normal for you, then it really becomes much more difficult to treat.”
Katie has other fears, too. “A big part of my concern is that eventually the concerns I have will be dismissed, that they’ll be minimized as ‘Oh, well, this is just how things are,’ or ‘Have you tried mindfulness?’ Or, you know, that the tests will run out, that there won’t be anything more to assess, yet I will still be so much different and so affected by this virus.”
Tarko and Katie have both received their first vaccinations; Tarko in March, Katie this past week. Tarko says her walking has improved since getting her vaccine. Katie, too, is hopeful she will feel a bit better post-jab; a small U.K. study showed that long haulers showed improvement after vaccination.
Tarko would like to see workplaces acknowledge long COVID as a chronic illness and make accommodations accordingly. Dr. Cheung wants to see a more co-ordinated response to long COVID.
“Right now, COVID patients or long COVID patients go to different people (doctors and specialists), and each person may only see one or two,” Cheung says. “And I think it’s important to have perhaps more specialized clinics that are co-ordinated, so that we can share with each other what’s new and what we have learned, so that it can have a more rapid knowledge-to-action cycle in terms of helping these patients.”
And Katie wants people to remain vigilant, especially as we face a third wave. She also wants the public to remember that those whose lives have been altered by COVID-19 are not just numbers on a public-health dashboard.
“I’m listed as recovered, but I am not better,” she says. “I’m not recovered by any stretch of the imagination. And those numbers, when they’re not attached to real people, are, I think, very misleading.
“It’s not through any fault of the public health system. That’s the data they keep, and I can understand why it’s kept. But it doesn’t tell the full human story of someone who’s ‘recovered.’”
Jen Zoratti is a Winnipeg Free Press columnist and author of the newsletter, NEXT, a weekly look towards a post-pandemic future.