COVID long-haulers in Nova Scotia face lengthy waits to get care
Long COVID is a catch-all term for post-infection health problems including fatigue, brain fog, sleep issues
Erin Booth was already dealing with brain fog, extreme fatigue and trouble seeing when a new problem was added to her life in the summer of 2020: she started spontaneously collapsing.
Seeking help, the Hubley, N.S., woman went to the emergency room four times looking for answers. On her final visit, the doctor asked for her to walk in front of him. She fell to the floor.
"It was like my brain thought I could walk and my body was just not letting me do it," said Booth.
She was admitted to the neurology unit of the QEII Health Sciences Centre in Halifax for five weeks and underwent a battery of tests to figure out what was wrong. She then spent four weeks in the hospital's rehab centre and learned to walk again.
Booth, 42, is one of more than a million Canadians who continue to have COVID-19 symptoms for months following the initial infection. She has long COVID, which is a catch-all term for a range of post-infection health impacts.
Today, Booth can't walk great distances. Sometimes, she can't make it to the end of her driveway. Her fatigue is so great that she can't work and she struggles to multi-task. She has insomnia and is lucky to get five hours of sleep a night.
Booth and other Nova Scotians who have long COVID say they aren't getting timely support from Nova Scotia's health-care system.
The province has a website where people experiencing lingering symptoms of a COVID-19 infection can fill out a survey. Through that, Booth took part this summer in an eight-week, online group program for people suffering from chronic issues due to COVID-19.
The virtual program covers understanding symptoms of long COVID and using strategies to improve and manage them. If more support is needed afterwards, follow-up care involving health-care providers could include occupational therapy, physiotherapy and psychotherapy.
Booth's admission to the program was initially denied because she contracted COVID-19 in February 2020 before testing was available, so she had trouble proving she had been infected.
Ashley Harnish, a health services manager with Nova Scotia Health, says so far 2,600 people who experienced symptoms three months after a COVID-19 infection have filled out surveys.
Of those applications, 20 per cent were flagged to the province's post-COVID navigator for follow up. In half of those cases, it was determined the 260 people needed care through a specialized clinic in Fall River, N.S.
Harnish said it can take two to three months to hear from the post-COVID navigator, and an additional four to seven months to get into their eight-week program. She said that wait times are growing.
"We are working on it," said Harnish. "It's incredibly challenging for the team because we want to be able to provide that in-real-time support, and again, our demands are lofty."
She said if people are on the wait list for care, they should also consult their primary care provider. The post-COVID centre does consultations with these providers to provide potential treatment options.
Harnish said the number of applications being filled in on the website is rising, but believes that's due to growing awareness of the service, as opposed to being a reflection of COVID-19 case counts.
Aislene Shewfelt, 34, recently learned she will take part in the online program in March 2023.
"It's a season away, almost," said the Bedford, N.S., woman.
Shewfelt contracted COVID-19 in February. For the first six weeks after the infection, she said she had flu-like symptoms and fatigue.
Shewfelt later developed blood clots in her lungs, which she attributes to her COVID-19 infection. She's on blood thinners, which have helped, but she said her lungs hurt and it's painful to laugh, sneeze or take a deep breath. She's also suffering from fatigue and brain fog.
"It's brought a lot of depression," said Shewfelt. "I just feel like there's something wrong with me. And I know there is physically, but then, mentally, it's like, I used to be able to do these things and now I just can't."
While Shewfelt is disappointed with the timeline for getting care, she was pleased with her interaction with the post-COVID navigator.
"She was the first person who actually was listening to me and telling me [the blood clots were] because of long COVID, that other people were experiencing this just as much as I was," said Shewfelt, who has had lupus, an autoimmune disease, for the past 12 years.
"And I keep saying to other people that it feels like I'm screaming into a void and nobody is listening."
Common long COVID symptoms
Dr. Angela Cheung, a Toronto-based expert on long COVID, is helping run a study that's looking at the outcomes for people who have contracted the coronavirus. She said the most common symptom people with long COVID experience is fatigue.
"This is not like, you know, you're tired after a long day's work kind of fatigue," she said. "This is fatigue that doesn't really go away, even if you sleep."
She uses an analogy involving cellphones. Pre-infection, people can charge their phones to 100 per cent capacity. With long COVID, the phone will only charge to a fraction of that and people must live their life on the reduced charge.
"The only thing that we have seen that seems to work fairly consistently is people resting and pacing [themselves]," said Cheung.
Taking the opposite approach landed Jeff Cumine of Halifax in his current state.
Unable to work
He tested positive for COVID-19 in March. While he appeared to recover quickly, he realized by the end of May that he didn't have the energy to keep working. A retail store manager, the 59-year-old took a package and planned to use the break to improve his health.
He planned to sleep more, eat better and push himself while exercising.
"I was doing what I thought was right," said Cumine.
He developed chest pains and his fatigue worsened.
'We need to let people know this is a real issue'
Today, he uses a walker when going to a store, provided he'll be there for under five minutes. But if he needs to be there longer or if he's in a mall, he uses a scooter or his electric wheelchair.
"We need to let people know know that this is a real issue and what to look for," said Cumine.
Cheung said common other symptoms of long COVID include shortness of breath, brain fog and sleep disturbance. In turn, the disruption to people's lives can lead to psychological problems, she said.
Cheung said research has shown that being vaccinated against COVID-19 prior to an infection helps reduce the likelihood someone will suffer from long COVID. She said additional vaccine doses can also help people recover more quickly from long COVID, but noted a small number of patients got worse after getting vaccinated.
How common is long COVID?
The Statistics Canada survey suggests 25.8 per cent of Canadian adults who contracted COVID-19 before December 2021 had symptoms at least three months after their infection.
Among those whose cases date from December 2021 onward, 10.5 per cent reported symptoms three months or more post-infection.
Cheung recommends that people wear masks in crowded indoor areas and make sure there is good ventilation, as well as getting booster doses of COVID-19 vaccines.
"The one thing about long COVID is that you won't have it if you didn't get COVID, and so try not to get COVID," she said. "Sometimes it's easier said than done."
Shewfelt and Cumine had received the maximum number of COVID-19 doses prior to contracting the coronavirus, while Booth contracted it in February 2020 when vaccines weren't available.
Cumine is one of almost 18,000 people who are part of a Facebook group called COVID Long-Haulers Support Group Canada. In hearing other people's stories, he remains upbeat about his situation.
"As bad as I've got it, at least I can get up," he said. "I'm blessed that I can shower and shave and brush my teeth, but then I have to sit down. Then I can get up and feed the animals and do a little bit of this or that."
Booth doesn't have the same optimism. She misses the little things in life, such as being able to drive her kids to places. Instead, she relies on her parents for rides.
"I'm 42 now and I should be the one driving them around this point," she said.
Booth has resigned herself to the belief that her long COVID may be permanent.
"I'm pretty much accepting of this at this point, like, this is my outcome and if it gets better, then that's awesome," she said.
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