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'I'm melting': How B.C. is healing long-haul COVID-19 patients

Healing long-haul COVID

Doreen Plante arrived in Burns Lake, B.C., in time to catch her sister’s last breaths.

The older sibling had been admitted to hospital with COVID-19 a few weeks earlier and in her delirium kept removing her oxygen. So Plante left her home in Edson, Alta., in a nearly 800-kilometre trip across the province’s north.

“In our tradition, when you have your loved ones around, you’re more comfortable and more safe,” said the 71-year-old Wet'suwet'en woman.

Plante arrived just in time to see her sister pass away. But what was supposed to be a time of mourning quickly turned into a personal health crisis. Within a couple of weeks, she, along with 10 other family members, all tested positive for COVID-19.

At first, Plante was lucky. Her symptoms were debilitating but they never landed her in hospital. The hard part came later. For more than two months now, getting out of bed or climbing the steps to her apartment have left her exhausted.

“I’d say it probably aged me 10 years older,” she said through tears. “I was so used to being so independent.”

Plante is one of thousands of Canadians confronted with COVID-19 symptoms months after initial infection. Widely known as “long-haulers,” the little-understood spectrum of symptoms has doctors increasingly worried.

Around the world, various studies have found between 10 and 30 per cent of people who fall ill with COVID-19 have lingering symptoms months later. At the low end, researchers estimate between 100,000 and 150,000 Canadians are suffering with long-COVID.

With the Omicron strain infecting more people than ever, it’s not clear how the new version of the virus will impact long-COVID cases, says Dr. Zachary Schwartz, medical director of Vancouver General Hospital's Post-COVID Recovery Clinic.

But if prior variants are any signal, even a mild case of COVID-19 could lead to long-term symptoms.

“We have to make the assumption that Omicron will be no different,” said Schwartz.

TREATING LONG COVID

The VGH clinic is one of four specialized clinics for long-haulers that opened up in B.C. in 2021; others in the network are based at St. Paul’s Hospital, the Jim Pattison Outpatient Care and Surgery Centre in Surrey, and the Abbotsford Regional Hospital.

Between January and October 2021, the four long-COVID clinics saw a combined 2,267 patients, according to Vancouver Coastal Health and Fraser Health authorities. Schwartz says clinics have had to turn away many more as they focus on those suffering the worst symptoms.

“We learned very early on that we cannot see everybody with COVID in the province,” he said.

To date, Schwartz says there are no therapeutic drugs available to treat the symptoms of long COVID. Instead, the clinics have turned to a range of other therapies and strategies patients can use to cope.

Treatment starts with screening a patient with blood work and other diagnostic tests to make sure there’s nothing else affecting their health.

Doctors have pulled on treatments for other illnesses, like ICU syndrome, concussion therapy and chronic fatigue. Physical and occupational therapists play a big role, but so does patient education.

For patients who can’t make it in person, the clinics provide constantly updated handouts and videos, and offer weekly training to family physicians on how to help.

“This is going to be here for a long time and we need to make sure that everyone is comfortable and dealing with these long-COVID patients,” said Schwartz.

That approach has proven crucial for people like Poppy Mould, a former bus driver, diabetic and cancer survivor in Prince George.

When the pandemic first hit, Mould remembers hearing the list of people at higher risk of severe outcomes due to COVID-19 and thinking to herself, “that’s me.”

“I’d say, ‘thanks for announcing my death,’ and I’d shut the TV off,” she told Glacier Media. “I was really hibernating. I’m a diabetic and a cancer survivor. I was terrified.”

When she first tested positive for COVID-19 on Dec. 7, 2020, all her worst fears turned into a “living hell,” she said.

At first, she was racked by severe body aches and couldn’t eat for four days. After a short lull in symptoms over Christmas, she started to crash again in the new year, with nausea, diarrhea, sweats and chills once again taking hold.

A month later, Mould says her mind turned to “mush,” brain fog so bad she couldn’t finish sentences. Her ears rang, her joints ached and constant fatigue left her unable to do even simple tasks.

“I feel like I’m a huge piece of wax melting. I’m melting,” she said. “I would leave the stove on. I’d burn things. I stood in the kitchen crying because I couldn’t stack plates in my rack.”

According to Schwartz and interviews with a half dozen long-COVID patients, the huge range of symptoms creates a launchpad for spiralling depression.

But no matter how many long-COVID symptoms reared their head, Mould says her Prince George family physician wouldn’t believe her. So she looked elsewhere.

'YOU NEED TO HIT ROCK BOTTOM'

In March, Mould was the first person to join the Prince George Hospice House’s long-haul support group. For two months, she was the only person there, so every week, the hospice staff member who started the program would call Mould and talk through her pain and anxiety.

Soon, two other women joined. Today, they meet every Monday, streaming the support group online to anyone in the province.

“You can go in with a hoody, not showered, you’ve had your worst day ever,” says Mould. “The two girls helped teach me you need to hit rock bottom with long-haul COVID. You need to slow everything down.”

All three now help each other and get telemedicine support from doctors and social workers at the Metro Vancouver long-haul clinics.

According to the B.C. long-COVID clinics, symptoms have been known to flare 24 to 48 hours after a triggering event. Triggers can be physical, such as a long bike ride, household chores or grocery shopping; mental, like answering emails, extended screen time or driving a car; or emotional, like the anxiety of going back to work, crying or socializing.

To avoid these triggers, the clinics show patients how to keep a symptoms journal to track their activity and emotional state. If symptoms flare, they can look back over the previous 36 hours to see what prompted it.

A patient gets points for every task they complete — seven points an hour to ride in a car, three points to brush your teeth — small victories to keep them going and an easy way to record triggers.

Mould says keeping track of her activity has meant readjusting the pace of life. At the same time, Mould says she has received help from occupational therapists on how to breathe better. She says breathing through the nose and deep into the lungs has helped her recover some lung strength.

“It just slows everything you do down. It keeps you in that perfect spot for healing.”

One of the other women in her group has taken it upon herself to explore resources abroad, and they’ve even trained with a volunteer opera singer in the United Kingdom helping long-haulers re-learn how to breathe.

That all allowed the bus driver to go back to work in the fall, albeit working in 45-minute spurts and monitoring her heart rate with a Fitbit.

Mould has had setbacks. One five-hour workday left her slurring her words and triggered panic attacks. She hasn’t been back since Oct. 2.

Still, says Mould, she feels like she’s making progress.

“It’s been 13 months but I do feel myself getting better,” she says.

LEARNING HOW TO TASTE AND SMELL AGAIN

Red flags first started going up for Eileen Wilson when her child’s North Vancouver daycare discovered a COVID-19 outbreak in the spring of 2021.

The 42-year-old mother tested positive on April 26. Soon after, a headache and dry cough came on. “Crazy sweats and chills” followed and her lower abdomen and chest had her “writhing in pain.”

By Day 12 she had lost her sense of taste and smell, something that would endure for nearly three months. In the fall, she caught what she thinks was a flu bug. A trigger went off in her body, and her senses were once again thrown out of whack.

Almost everything smelled like toxic chemicals — her husband’s body wash, the spray during the FlyOver Canada 4D flight at Vancouver’s Canada Place.

“Coffee smells burnt. Ginger tastes like soap. Yogurt and feta all smell rancid. Raw meat smells rotten,” she said.

The week Wilson first got COVID-19 coincided with her last contract as a wine rep. Days used to be filled with wine tastings at restaurants. Now, she says, “there’s no way I could go back.”

“I used to love chardonnay. Now, it’s disgusting. Everything just tastes off,” she said.

Some natural smells, like eucalyptus or someone smoking a joint on the street, smell the same as she remembers. In other instances, she has caught herself on the tennis court sitting on the ground trying to remember the smell of a new tennis ball.

“Or my three-year-old pees the bed and I’m lying there thinking, ‘It smells like pee, you know what this is supposed to smell like.’ It’s weird,” she said.

Wilson has lived with that tortured interpretation of the world for nearly six months now. At the same time, severe brain fog has left her mind to glaze over when people talk to her, leaving her unable to remember what they said.

Schwartz says his clinic has seen a range of symptoms, from chest pains and breathlessness to brain fog, insomnia, PTSD and depression. By far, he says, the most common symptom has been fatigue.

But patients like Wilson often struggle most with losing parts of who they are — their hair and their sense of smell and taste, said Schwartz.

The VGH clinic has seen a range of professionals, like chefs and sommeliers, who have lost both their senses and livelihood.

But even for your average person, not being able to enjoy food and smell the world around you can be one of the most distressing symptoms as time goes by.

“What I had initially considered small issues in the grand scheme of things are often some of the more bothersome ones at the six-month mark,” said Schwartz.

“There's no obvious cure or magical pill to take which will cure all symptoms.”

For Wilson, the thought of getting the Omicron variant without healing from her first COVID-19 infection provokes terror and anxiety.

In other moments, she thinks, “maybe this is my new life.”

WHO IS MOST AT RISK FOR LONG COVID?

When Wilson first fell ill with COVID-19 last spring, she hadn’t yet received an invitation to get vaccinated. She still wonders if it could have made a difference.

There are some early signs that vaccinations could provide some protection. Preliminary evidence out of the U.K. National Office of Statistics found up to a 13 per cent decrease in the likelihood of self-reported long-COVID cases. A second dose dropped the likelihood another nine per cent.

Another study signalled vaccinations could cut the chance of getting long-COVID symptoms like hair loss, while there appeared to be no effect on reducing mood, anxiety and sleep disorders.

And in a poll conducted by the Survivor Corps Facebook group and published in a pre-print study, researchers analyzed the responses from 1,949 fully vaccinated participants. Of 44 symptomatic breakthrough infections, 24 self-reported long-COVID symptoms. Because the poll was not random, it doesn't estimate the risk of long COVID. But it does indicate long COVID can happen after a breakthrough infection.

While some doctors remain hopeful, more initial infections due to Omicron could lead to more long-COVID cases even in highly vaccinated populations.

“We might see a decrease in the overall prevalence now that there's a much higher rate of population vaccination,” said Schwartz. “But clearly, what we're seeing for everything else, a small percentage of a very, very large number is still a large number.”

In the meantime, thousands of British Columbians are looking for help wherever they can find it.

Mould is turning to a group of family physicians in Victoria who are preparing to run online cognitive behavioural therapy sessions to long-COVID patients. And Wilson finally received a stack of information from the St. Paul’s long-COVID clinic last week.

The goal, she says, is to re-train her sense of smell again.

“You get a bunch of different essential oils, remember and recollect what they used to smell like, in the hopes of what your brain will catch on,” she said.

'A VERY LARGE AMOUNT OF PEOPLE'

Planning for a wave of new long-COVID patients due to Omicron infections is fraught with uncertainty. That’s because it’s not clear who will show up at one of B.C.’s long-COVID clinics.

One problem is access. Up until now, patients have only been accepted if they can show they have had COVID-19 through a positive PCR or blood test, and still have symptoms three or more months after the onset of symptoms.

But with the rise of the Omicron variant, getting such a test can be next to impossible for anyone under 65. Schwartz says the clinics are reviewing their policy.

Another wildcard is who is most likely to turn into a COVID-19 long-hauler. The clinics have combed through the database of patients to try and correlate laboratory abnormalities and symptoms. So far, they haven’t been able to find anything in a person’s medical history that makes them more likely to develop long-COVID symptoms.

“There are lots of theories out there. And honestly, I think it's going to be a while before there's an actual determination for what is causing these long symptoms,” said Schwartz.

Internationally, the head of the VGH clinic says some patterns are emerging — one of the biggest predictors for developing long COVID is being female between ages 40 and 55.

“This is a very young population who typically does not require access to medical care,” said Schwartz. “It's going to be a very large amount of people who are going to need to access care and in a relatively short amount of time — just because it's all coming up once.”

“It may be a huge burden on the health-care system.”



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