Life for Lorraine Graves has taken a dramatic turn.
Before March, she says she was living a vibrant life: public speaking, hosting workshops and working as a journalist in Richmond, B.C.
Now, having one phone call with a friend in the morning will exhaust her energy for the rest of the day and she will be forced to lie down — and that’s on a good day, she says.
“I’m incredibly disappointed that the price of having COVID-19 is that my life is going to be a pale imitation of what it could have been,” she tells CTV News.
She didn’t know it at the time, but back in early March, she had been infected with the coronavirus.
She and three family members in the house were all sick around the same time with various symptoms.
“Everybody had a different collection of symptoms from the grab-bag of possibilities and everybody had a different severity and I drew the short straw.
“I woke up feeling like I’d been hit by a bus. My lungs, instead of air, were full of egg white. I couldn’t breathe, I couldn’t cough out. I had headaches; I had pains; my brain was foggy.”
She also couldn’t taste or smell a delicious dinner her husband had prepared.
Some of symptoms her family had weren’t considered hallmark COVID traits in the early days of the pandemic, so they weren’t tested at the time.
“My GP told me I definitely had COVID-19. The lack of sense of taste is very rare in a viral condition, plus the lung problems, plus all the other things,” she says.
She says she was symptom-free one month later but then suddenly, her lungs felt like an “old helium balloon” that had unexpectedly deflated.
She’s been experiencing a wave of symptoms ever since.
“I thought it was binary, you live or die,” she says coughing. “I didn’t understand that it’s like polio, where there were people who lived, people who died and people who lived with long-term consequences.”
She is now part of a club called the Long-haulers, a club she never thought she’d be part of.
“We’re in it for the long haul. It’s not one and done,” she says.
She’s found a community of other COVID survivors who are still dealing with the aftermath of the disease.
“This disease can be debilitating. It can be deadly. But it can cost you the rest of your life’s health as well,” she says.
New study looks at long-term health impacts
Why some COVID patients are still suffering from lingering symptoms while others are symptom-free is the focus of a new study.
The Canadian COVID-19 Prospective Cohort Study looks at roughly 2,000 patients, some who were in the intensive care unit and put on ventilators, and some who were never hospitalized at all, like Graves.
“Why are patients who are not as sick, why do they still have lingering symptoms? And so I think it’s still in the early days, in terms of trying to understand that piece,” says Dr. Angela Cheung with the University Health Network, a co-lead in the research. “We’re looking at their genetics, how their — what we call biomarkers — to see how we can separate the people who are going to be really sick versus those who are not as sick.”
Another piece of the study is understanding the caregivers of those patients who were sickest with COVID and the impact the disease is having on those families and their mental health.
“These patients will have very significant disability — after critical illness and after severe acute respiratory distress syndrome, which is the life-threatening complication of COVID-19 — the patients will be weak,” explains Dr. Margaret Herridge, co-lead in the study.
Dr. Herridge says some patients may still struggle with persistent coughs up to eight weeks after a viral illness, but other symptoms, like fatigue, are a cause for concern.
“These systemic complications that might lead you to think that there are other organ system issues would be unusual. And I think if people are suffering from these symptoms they definitely should be seen,” she says.
Experts from Ontario, Quebec, B.C., Alberta, New Brunswick and Nova Scotia are now helping to find out more about the health implications of this mysterious disease.
“It will be extremely helpful to plan for how to best look after these folks and to help inform public health policy,” explains Dr. Herridge.
Patients are still being recruited for the study. Anyone who’s still experiencing symptoms after testing positive for COVID-19 and is interested in participating in the study is asked to email CANCOV@uhn.ca.