Seeking answers for lingering symptoms: How some Manitobans are finding treatment for long COVID
Pulmonary Rehabilitation Program has seen dozens of Manitobans living with ongoing post-COVID symptoms
Katie Kitchen can't say for certain how she caught COVID-19, but she can tell you how drastically it has changed her life.
More than six months after testing positive for the virus, the once active 33-year-old occupational therapist still has trouble breathing, can no longer exercise and has to schedule what she calls "lung breaks" to rest.
"Things that were important to me, like my health, feel pretty out of control now," said Kitchen. "I don't know one day to the next how I'm going to feel."
She developed post-acute COVID-19 syndrome — also known as long COVID or long-haul COVID, which Manitoba Shared Health explains as cases that were not recovered for four or more weeks after being infected with the coronavirus that causes COVID-19.
A Shared Health spokesperson said more than 12,000 people in the province have experienced long COVID — roughly 22 per cent of all COVID-19 cases reported in Manitoba as of June 22.
Case of community transmission
When Kitchen tested positive for COVID last December, her case was classified as community transmission.
"It's something that haunts me a little bit to be honest because I followed all the restrictions," she said. "I'm sort of known amongst my friends and family to be the most careful, or the most COVID-rule diligent."
Kitchen figured she'd be sick for a couple of weeks and then back to normal — she was young, worked out three to five days a week and had no underlying health issues.
"I considered that I would be sort of a best-case scenario outcome," said Kitchen. "Be sick till maybe New Year's and then be able to get back on track with things. And that's simply been so far from what I've experienced."
Now, Kitchen has been on a mission to figure out why she still has symptoms and how to fix them.
She's undergone a long list of diagnostic tests, sees her family doctor, a respirologist through a post COVID clinic at a Winnipeg hospital, a naturopath and is treated by a team at the Pulmonary Rehabilitation Program at Deer Lodge, she said.
Pulmonary program now seeing younger patients
Dana Kliewer is a physiotherapist with the Pulmonary Rehabilitation Program at Deer Lodge, which also has sites at the Misericordia Health Centre and Seven Oaks/Wellness Institute funded by the WRHA.
She said before COVID, the clinic typically saw patients aged 50 and up living with chronic conditions such as chronic obstructive pulmonary disease (COPD) or pulmonary fibrosis. But, since December 1, 2020, the program has had 83 long COVID referrals, including some patients in their early 30s, she said.
According to Kliewer, clients are describing symptoms beyond an impact on their respiratory system, including debilitating fatigue, brain fog, dizziness and headaches. She said some are experiencing long COVID symptoms months or even about one year after their initial infection.
"This is having a significant impact on their even performing basic activities of daily living ... things we sort of take for granted like getting up, having a shower, doing daily chores," said Kliewer.
"Especially with this younger population, these are clients who were in the workforce… and they want to get back to work, but the impact of some of these symptoms that we're seeing are making it very difficult for them to participate in their life roles."
Kliewer estimates 35 to 45 per cent of the program's long COVID clients did not require admission to hospital, but are still living with symptoms after their infectious period has passed.
Kliewer said the program offers a multidisciplinary approach which can include a physiotherapist, respiratory therapist, an occupational therapist to help with cognitive issues and a social worker.
She said after an initial assessment, she typically starts with foundational breathing work, before teaching people strategies to manage daily activities.
"It's like as if, you know, with long-COVID someone flips a switch and we're breathing like we're in fight or flight response ... and we can sort of see that in the rate and the pattern of their breathing," she said. "Breathing can actually be a really, really powerful tool to give someone a little bit more control over their nervous system, over how they're feeling."
She said research is still needed to better understand long COVID and how to treat it.
"What's really surprised me with these clients is typically with exercise, with reconditioning you see fatigue improve and that is not the case with these clients," she said. "They get told, 'oh, well you're just tired, oh well just move, exercise, you'll feel better,' and that has not been the case."
The Wellness Institute on Leila Avenue in Winnipeg offers programs for long COVID patients, including a branch of the WRHA-funded Pulmonary Rehabilitation Program.
In March, they also started a Post COVID-19 Rehabilitation and Recovery Program through their private practice clinic. Tanya Kozera, director of clinical services at the Wellness Institute, estimates the new program is seeing about two to three new clients per week.
"Mostly people in their 40s, 50s… who are trying to get back to work, back to their careers and often that's what their biggest concern is," said Kozera.
"We actually have a multidisciplinary team and that is what had been indicated in all our readings," said Kozera. "Because people are so multi-symptomatic we actually would need to have a whole team to work with them."
She expects the program will see more people in the coming months.
"Primarily because we're still seeing people coming in from that second wave that are still struggling," said Kozera. "This third wave, it's hitting working age people.... I really think it's going to become rather busy."
'How many more tests?'
Kitchen said her diagnostic tests have come back mostly normal.
"I think one of the hard parts that I wrestle with now is, how much longer is this going to go on for?" she said. "How many more tests am I going to have to get?"
She'd like to see more awareness around long COVID and what what supports are out there to help others who are struggling.
"It's interesting because I am a patient and I'm also a health-care professional and I have other friends, other health-care professionals coming to me asking me how to access certain post-COVID treatments, or post-COVID programs."
She also thinks it's important to get vaccinated.
"The perspective that I give to people is if a vaccine has even any chance of protecting you against what I have been through, I want that for you."