'A bit unnerving': COVID-19 survivors worried about future consequences

Matt Greenshields says it was a long process before he felt he was finally over the symptoms of COVID-19.

The University of Calgary student was diagnosed with the virus in mid-March. Combined with an undiagnosed case of mononucleosis, he found himself in an oxygen tent in the intensive care unit of Calgary's South Health Campus.

The recovery was slow. He had lung problems for a couple of months, his liver enzymes were abnormal and his heart rate was elevated.

Greenshields, 20, said his doctor had him in for checkups every couple of weeks for bloodwork.

He was technically COVID-free on April 1 but says he didn't feel like himself until the end of May. He didn't return to playing sports until June.

"It started that I literally couldn't get out of bed. I would sleep for 16 to 18 hours a day. As the weeks go by I'd get out of bed and try and do a couple of pushups. I obviously was struggling," Greenshields said.

"Just because the fatigue that was left over and the hit that my body took. It took quite a while to get over that," said Greenshields.

He is now staying away from large crowds and continues to practise physical distancing. Greenshields came forward with his story in the spring when he said he feared people his age were not taking the COVID-19 threat seriously.

He's still concerned.

"Even now they're saying they don't know what the long-term effects are going to be. Is there anything that's going to happen in a year from now or if I ever get a sniffly nose today the doctors are saying come in just because they don't know if it's a sniffly nose or related to COVID or not?" Greenshields said.

"It's a bit unnerving for sure. Every time I'm feeling any sort of symptom I kind of get a little bit of a flashback to how it was and I'm a little bit scared but a lot of the time it just goes away, and I'm OK now."

Lingering impact

COVID survivor support websites have popped up across the globe with individuals expressing concerns about the lingering impact of the virus. Many complain of persistent cough, breathing problems, fatigue and chest and joint pain.

These are the most common symptoms respiratory therapist Jessica DeMars also sees in clients who have had COVID, and who may suffer from neurological and gastrointestinal problems.

"A lot of these people are really quite fatigued and can't tolerate work. And then you've got anxiety on top of 'I need to get back to work' or the anxiety of 'I don't know what's wrong with me and nobody knows what's wrong with me,"' said DeMars, who owns Breathe Well Physio.

Dr. Jim Kellner, a professor in the departments of pediatrics, microbiology, immunology and infectious disease and community health sciences at the Cumming School of Medicine in Calgary said lingering symptoms aren't a total surprise.

"Some folks have very long symptoms because it's been such a severe disease.… And if you've had a very long hospitalization, you become very weak, and with that weakness is fatigue and nothing works well," Kellner said.

Kellner said the vast majority of people do recover quickly —usually between weeks to months — but there are a number that have the symptoms a lot longer.

He said the long-term impact isn't dissimilar to those who suffer serious bouts of pneumonia. But he said there are still unanswered questions about the future.

"We know COVID interacts with our systems at a cellular and tissue level, which is different from other viruses and infections. So are there some unique aspects on how it attacks our systems that lead to persistent symptoms in some unique way?" he asked.

Dealing with lasting effects

It's the unknown that prompted DeMars and her partner, Simone Hunter, to team up with a Calgary clinic to develop a program for individuals with lasting effects who are looking for help getting ready to return to the workplace.

"Before this started, they weren't being taken seriously. The worst thing you can say to someone who has very real symptoms is 'it's all in your head."'

Hunter said clients feel "scared, very isolated and ostracized" and sometimes just need to learn how to breathe after recovery.

"People get stuck in one pattern and it's like you're always breathing like your engine is revved high, and as soon as you do an activity, you have no more gears. Just teaching people this is your new baseline," she said.

"If you wind up with a respiratory issue or something a little bit wonky, you're discharged home with a 'good luck' and you are just as debilitated, maybe have just as much trauma as someone with a burn — but because you don't have the diagnosis, there's no problem," Hunter said.

Uyen Nguyen, executive director of the Synaptic Spinal Cord Injury and Neuro Rehabilitation Centre, said her facility will also provide nutritional and mental health support for those who need it.

"When we first discussed this, we were kind of projecting, thinking it would be respiratory and it would be the severe cases, but that's not what we're finding," she said.

Nguyen said many people are struggling with ongoing symptoms including breathing problems, fatigue, body pain and anxiety from their symptoms not going away.

"What do people do when they still have residual symptoms or they still have complications that aren't being met? If it really is the long haul COVID patients that sort of rise in needs, we want to be able to respond and give them what they need."