A LONG HAUL
One year later, as some COVID-19 patients continue to suffer persistent, life-changing symptoms, doctors fear number of long-haulers will grow dramatically
A year ago today, Atish Ram was in a near-fatal battle with COVID.
He was put in intensive care twice. After eight weeks in hospital, he spent six months at home on oxygen.
His condition has since improved, but he continues to struggle with breathing, fatigue and stress — one of an uncertain number of people enduring long-term symptoms from this virus.
“I can't dance, I can't run. I can go for walks, but if I go up the stairs I'm really winded. I have a significant amount of brain fog, memory loss. And I've been seeing a chiropractor because I've had back pain and neck pain constantly, and headaches and ringing in my ears,” the Surrey resident said.
“My tastebuds and my smell is still not back the way it was before . ... I don't know if I'm ever gonna be back to normal again.”
He gets frustrated when he hears B.C. officials list the daily number of new infections, hospitalizations, deaths and people recovered.
“I don't buy that recovered part. Because even though we may not have the virus, we're not fully recovered from this.”
Ram, 59, has had an appointment at one of B.C.'s three post-COVID clinics for patients who suffer from a lingering range of symptoms that persist after they initially recover from the virus.
While he appreciates the research being conducted into why COVID hits some people harder and longer, he is frustrated by what he perceives as not enough resources in the health care system for chronic sufferers. He pushed to be admitted into the clinic, and had to find his own physiotherapy and chiropractic services to deal with his pain.
Susie Golding runs the COVID Long-Haulers Support Group Canada Facebook page, which has nearly 13,000 members. She fears that failing to properly help people like her with persistent brain fog will have dire consequences down the road.
“If you look at the total amount of COVID cases,” she argued, “long-haulers are going to be draining the (health care) system in a few years because they can't work and they haven't had any rehab structure. It's just really frustrating.”
Goulding believes that Canada doesn't have enough COVID clinics for long-haulers, accessing them is too restrictive because it requires doctor referrals, and that they are focused mainly on research. She noted, though, that B.C., compared to other provinces, is a “front-runner” with its three clinics.
Located at St. Paul's Hospital, Vancouver General Hospital and the Jim Pattison Outpatient Care and Surgery Centre in Surrey, the clinics were all operating by January and have had more than 460 patients, who they see roughly three months after diagnosis.
The bulk of those people have been through the St. Paul's location, which opened first. Those aged 40 to 60 represent the largest chunk of patients seen by St. Paul's, at 40 per cent. Another 37 per cent are older than 60, and 22 per cent are younger than 40, said the lead physician, Dr. Jesse Greiner.
“What we're seeing here in our clinic is that a lot of patients have symptoms that last a lot longer than the typical cold or flu, like the typical two, three weeks. And there's a whole host of reasons why that can be,” he said.
Some are struggling with mental health — including anxiety, depression or post-traumatic stress disorder — which could be related to their ICU stays, worries about infecting loved ones, isolation, or financial uncertainty. Others may suffer from lung problems, heart issues, or post-exertional malaise.
People with malaise, for example, have a variety of serious symptoms. “There's cough and chest pain, shortness of breath, arthritis, headaches are terrible, brain fog,” Greiner said. “They are triggered by physical, cognitive and emotional stressors in their lives.”
The number of new patients in his clinic has steadily increased with the second and third waves, which have come with more aggressive COVID-19 variants. Greiner worries the climbing case counts will mean more demand in months to come.
“Every day I look at the numbers, and I get scared that there's going to be a torrent of people that are going to need to come to these clinics,” he said.
A Royal Columbian doctor said last week the Surrey hospital's ICU was starting to fill with young people, who have not been vaccinated yet and seem to be hit hard by the new variants. Last month, Dr. Sharry Kahlon at Surrey's post-COVID clinic said there was anecdotal evidence that younger people, some in their 30s, were increasingly suffering from long-term systems.
The St. Paul's clinic patients are about half male and half female, even though some studies suggest the so-called long COVID-19 seems to affect women more.
Exactly what percentage of COVID-19 patients will get at least one lingering symptom still isn't clear. Australian research suggests it is roughly 40 per cent, while a British study pegged it as high as 50 to 60 per cent, although Greiner isn't convinced those numbers are accurate.
He prefers research generated from the international COVID Symptom Study app, which has gathered data from more than 4.6 million virus patients worldwide. It found most people reported being healthy again in 11 days or less, but 13 per cent had symptoms that lasted four weeks, 4.5 per cent for eight weeks and 2.3 per cent for longer than 12 weeks.
The study found about 10 per cent of 18- to 49-year-olds developed long COVID-19, and that increased to 22 per cent for those over 70. People who were overweight or had asthma were also more likely to have prolonged symptoms.
Based on this research, Greiner believes the chances of having prolonged symptoms “probably falls in the range of 2.5 to 10 per cent of patients.”
Even at those lower percentages, when you consider B.C. has had more than 116,000 cases, that's 3,000 to 11,600 people in B.C. alone whose lives are potentially being hampered by at least one persistent symptom.
The Health Ministry could not provide an estimate of how many COVID-19 long-haulers B.C. has had, but said the province is participating in international studies and doing research to better understand what is happening locally.
Some of Greiner's patients with long COVID-19 have recovered, but he noted that some had symptoms for as long as 10 months. Similar to people who have concussions, Grenier tells these patients that the best treatment is to slow down and limit how much they do.
“It's not to go for a run, it's not to go back to school and not go back to work too quickly,” he said. “What your brain needs in that scenario is rest and time to recover.”
Many of his patients, Grenier added, have had to restructure their lives, and learn what triggers their symptoms and to try to avoid that activity.
“Doctors and lawyers and nurses and engineers, and people that typically are very high functioning, tend to be the people that are heavily affected by this,” he said. “People running up and down mountains for their job every day, and all of a sudden ... can't walk down the street for 20 minutes without having a flare of their symptoms.”
A recent British study with a limited number of participants concluded there was “a small overall improvement in long COVID-19 symptoms” after patients were vaccinated. Greiner has not seen enough evidence to support the theory, but noted his clinic will collect data on when its long COVID-19 patients get vaccinated and track whether that affects their recovery.
Postmedia asked the Health Ministry if these three clinics are sufficient to help the presumably growing list of long COVID patients in B.C., especially since none of the locations is on Vancouver Island, the Interior or in the North.
A direct answer was not provided, but a spokeswoman said doctors in other parts of the province can consult with medical staff in the clinics or can call a phone line staffed by internal medicine physicians.
The Metro clinics are focusing on patients, like Ram, who were admitted to hospital after they contracted the virus. The international COVID Symptom Study, though, indicates that many people with serious cases of long COVID were never sick enough to go to hospital.
Lorraine Graves fits that category. She fell ill in March 2020 after losing her taste, and was able to recover at home with her family. She had a terrible cough and struggled to breathe, but used an oxygen concentrator machine for help. Graves, who describes herself as middle-aged, got better but never truly recovered and still struggles.
“Everything hurts. Everything's hard. Thinking is hard. Walking is hard. Breathing is hard,” she said. “You wake up feeling like you haven't had enough coffee and you live like that all day . ... I led a vibrant life. I lived like I was running with the wind in my hair.”
Graves, a science journalist based in Richmond, has trouble these days remembering certain words and hasn't been able to return to work.
After lobbying her family doctor, Graves was seen once by the St. Paul's clinic where she was grateful that Greiner validated her symptoms, noting some professionals can be dismissive of long-haulers' complaints. She also appreciated his advice to slow down her activities, but hopes more money is put into treatment and long COVID-19 research so solutions can be found.
“We need clinics, we need active rehab, we also need rehab for our lungs. And we need the research into what's causing this,” she said.
“We need that because there are so many of us. And if you want to get us back to our productive lives, you've got to figure out what's happening.”
Like Graves, Ram has been unable to return to work. He ran a successful event and wedding photography business, but has not picked up his heavy professional cameras since he got sick more than a year ago.
When Ram came home from the hospital in June, the father of three adult children was 40 pounds lighter and had barely enough energy to walk.
Last week, a CT scan revealed his lung capacity was at 63 per cent of his preCOVID-19 health, and his doctor estimated it won't get a whole lot better due to scarring caused by the virus.
“I think to myself, `Has this shortened my lifespan?'” he said. “With other things like heart disease, they know how to treat it, they know how to manage it. But with COVID, they don't know.”
He is frustrated not only by the wait for answers, but also by people who are against the vaccines or against wearing masks. As the case counts rise, he'd like to protect others from enduring his pain.
“When I see what's going on right now, it just scares the crap out of me.”