Struggling with post-COVID-19 syndrome in a First Nation with limited health services

Every breath is now a struggle, every step courts exhaustion for Andrew Yesno.

Yesno, a band councillor in Eabametoong, a fly-in Ojibway community 360 kilometres north of Thunder Bay, Ont., thought he was in the clear after contracting COVID-19 at the end of March, testing positive in early April and then feeling his health return in May. 

Yesno suffered from serious flu-like symptoms during his infection, but it was never severe enough for hospitalization. He rode it out in isolation, making art and posting it on Facebook and in the windows of his parents' home. 

Then June hit and suddenly every breath became a labour. He lost his ability to smell and taste food, which would just make him nauseous.     

"Not even toast; I can't even taste toast," said Yesno, 41.

"Even when I talk on the phone, on conference calls, if I talk for a couple of minutes with you I have to take a pause and a breath."

Carrying three or four bags of groceries from the store about 90 metres from his home exhausts him and he's dropped to his knees once he's through the door.

Bouts of fatigue hit throughout the day. 

"I could lay down at lunch and I could be out in two minutes, sleep for 45 minutes straight, and be ready to go and then crash for three hours in bed and be gone," he said.

He recently penned a letter to other members of the band council to explain why he couldn't do simple things like help distribute water bottles — Eabametoong has been on a boil water advisory since 2001 and a new water treatment plant is inching toward operation.

"Breathing for me is like a person standing on your chest, another person standing on your back, and finally a third person sitting on your shoulders. Basic things like laundry or mopping are exhausting," wrote Yesno, in the letter. 

"I made my arrangements just in case — my body upon my death will go to science and research so perhaps more can be learned. A vaccine would be great but would do nothing to help us that already contracted it. We're done and just guinea pigs."

Body's reaction to infection

Very little is currently known about what's been called "post-COVID-19 syndrome" — a multitude of symptoms that have afflicted a proportion of those who have recovered from the coronavirus.

The main focus of health research during the pandemic has been on keeping people from dying, said Scott Lear, a professor at Simon Fraser University's faculty of health sciences and the Pfizer-Heart and Stroke Foundation Chair in cardiovascular prevention research. The research is now playing catchup with the after-effects of infection, he said. 

"We don't know how long these things persist or what the long-term problems may be," said Lear.

It's not even clear what proportion of recovered patients suffer from these symptoms, with studies ranging from 90 per cent to 10 or 15 per cent, he said.

Lear said it appears that the after-effect symptoms aren't caused by the virus itself, but by the body's response to it or "over-response." This creates inflammation at the tissue level in different regions of the body like the heart, causing carditis, or in the brain, creating brain fog or an inability to concentrate.

The virus can also scar the lungs, leaving the organs in a state that resembles a lifetime of smoking in patients who may never have smoked a cigarette in their life, and posing a high risk of blood clots, said Dr. Farha Ikramuddin, assistant professor in the department of rehabilitation medicine at University of Minnesota Medical School. 

Ikramuddin is treating patients who have recovered from COVID-19, including those who have been put on ventilators for weeks at a time, leaving them unable to swallow, with hematomas that bleed in the muscle fibre and nerve damage.

"We still don't know how long and how deep the effects of this pandemic are going to last," said Ikramuddin.

'Takes a village to take care of these patients' 

Ikramuddin said she saw chronic fatigue syndrome in patients who recovered from the 2009 H1N1 influenza pandemic. 

"I had a few patients that I have been following for a couple of years and these patients have extreme fatigue that needs to be managed in a special way," she said. 

One of the rehabilitation treatments she and her colleagues are employing on recovered COVID-19 patients involves graded exercises — setting a baseline and then increasing that activity in increments.

"We find this has worked with chronic fatigue syndrome," she said. 

However, COVID-19 is so new, and its after-effects impact so many different parts of the body that many patients need comprehensive treatment that requires input from experts in various fields — heart, brain, lungs.   

"It takes a village to take care of these patients," said Ikramuddin.

However, in remote communities like Yesno's where overcrowding, widespread and untreated health issues along with food insecurity are the norm, there is no access to this type of "village" health care, said Anna Banerji, director of Global and Indigenous Health at the University of Toronto's faculty of medicine.

Eabametoong has recorded four COVID-19 cases so far.

"In a larger community, you have rehab centres that take post-COVID people to try to get them to exercise and to stimulate them….  You don't have rehab there, in most of these communities, and that is a problem," said Banerji. 

"This is a real phenomena and their suffering is real…. If there are ways of having some form of rehabilitation in their communities or have the nurses educated on post-COVID and what they can do to help these individual communities."

Eabametoong relies on a nursing station funded by Indigenous Services Canada (ISC) and overseen by the Sioux Lookout First Nations Health Authority. 

According to ISC, there have been 459 confirmed COVID-19 cases on reserve as of Sept. 3, with 417 cases recovered, 38 requiring hospitalizations and six deaths. 

As for Yesno, where in the past late summers were spent out on the land or in his boat out on the water, now he passes the days, when not dealing with council business, flying a remote control airplane, building model airplanes and drawing — all low intensity activities that keep his mind working. 

"I don't want people to take it lightly," he said. 

"It worries me that people aren't taking this seriously any more, now that cases are low, they want things to reopen and be back to normal."