When Krista Blaikie Hughes went into hospital last April during the pandemic’s third wave, she expected to leave within two days.
She ended up staying for 19, including several days spent in the ICU after contracting COVID-19-related pneumonia.
“Eventually I did go home, but I naively thought that I survived, I just have to go home and build up my strength, get the lungs clear, and my journey’s done,” Blaikie Hughes said in an interview.
“It didn’t quite play out that way.”
Blaikie Hughes is one of an unknown number of people in Nova Scotia struggling with long-haul COVID, also called post-acute COVID-19 syndrome or long-COVID.
In this province, and many other jurisdictions, patients are considered to have long-COVID if they have common, persistent symptoms and a functional impairment due to their symptoms 12 weeks after an initial — or a suspected —COVID-19 diagnosis.
Almost a year after contracting the virus that causes COVID-19, Blaikie Hughes still struggles with brain fog and fatigue. She doesn’t have the energy to go on the adventures she used to with her daughters, who are nine and 14.
“I kind of feel like a spectator in my own life with my kids. They’ve adapted relatively well … but I feel that they’ve lost some of what they might have had,” she said.
“I’m fortunate to have a very supportive spouse who has taken on a lot more of the housework and the other chores. I prioritize and then some things, well, they just don’t get done.”
‘Two different illnesses’
An officer manager with self-described “crackerjack multi-tasking skills,” Blaikie Hughes was also a former public relations and communications professional.
She now sometimes struggles to find words.
“In the middle of a sentence, I completely stop or I struggle to come up with the word I’m trying to find, and this persists to today,” Blaikie Hughes said.
Although she returned to work part-time in mid-June and then full time last July, it took her 11 to 12 hours to complete what she used to be able to do in eight.
“By August, my doctor was starting to say, ‘I think you probably have long-COVID … it’s time for you to take some leave,’ and so I went on medical leave,” she recalled.
She still hasn’t returned.
“COVID 19 is acute. You get the infection and you may have very severe symptoms or you may not, depending. That’s the thing about COVID-19, and no two people have the same experience,” Blaikie Hughes said.
“The difference with long-COVID is it’s a chronic illness, so it’s ongoing. We don’t know how long and how persistent it will be … It’s almost like having two different illnesses. I had COVID, but now I have long-COVID. So what is that? How does that look?”
‘Waiting for a wave’
No one knows exactly what percentage of people will go on to struggle with ongoing, persistent symptoms related to their COVID-19 infection.
One researcher told the Halifax Examiner last month that between 13% to 15% of people who contract the virus are expected to develop long-COVID.
Nova Scotia Health (NSH) says Canadian literature currently pegs that number at around 10%, and NSH expects to start seeing an influx of long-COVID patients from the Omicron wave in about two weeks.
That’s when Omicron’s first appearance in Nova Scotia hits the 12-week mark.
“We always have 12 weeks of planning or 12 weeks of knowing what’s coming … March 2 is the date that we all have in our calendar to be prepared,” NSH health services manager Ashley Harnish said in an interview.
“We definitely are waiting for a wave.”
Harnish said there are still many unknowns when it comes to long-COVID. It’s not as simple as saying 12 weeks post-diagnosis people will present with specific symptoms.
Using standardized tools and assessments, she said there are about 15 symptoms that people will typically identify as having worsened following their initial COVID diagnosis.
“There’s always the caveat in there that we’re still learning. This is not a perpetual forever diagnosis, so we don’t want to give this kind of doom-and-gloom story,” Harnish said.
Nova Scotian patients they’ve seen so far tend to struggle with things like dizziness, memory, concentration and sleep issues, fatigue, muscle and general malaise, anxiety, and depression.
“We see a lot of psycho emotional, psychosocial, so there’s a lot of mental health, mental wellness that is involved with individuals who have long-COVID. What we’re seeing is not one definitive diagnosis,” she said.
“It’s typically a broad scope of ‘Here’s a number of things that are worse after having COVID.’ And that’s like a gestalt that really results in that long-COVID presentation.”
‘We see you, we hear you’
Harnish said before the Omicron wave, people who received a positive PCR test would get a wellness screening call at least 12 weeks post-diagnosis. Of the 2,000 patients contacted during that initial outreach process, Harnish said 50% had at least one presenting persistent symptom while 10% had at least one symptom and a functional impairment.
The combination of a persistent symptom or symptoms with a functional impairment would trigger a follow-up with the NSH post-COVID navigator. Harnish described that person as the gatekeeper for all potential post-COVID patients.
“She acts as the switchboard to make sure that patients are getting to the right place at the right time. Some of those needs may land within the post-COVID service and the Integrated Chronic Care Service (ICCS) out in Fall River,” Harnish said.
“But some of them might not. Some of them, because of the way they’re clinically presenting, might be more appropriate for continuing care or for outpatient services. She acts as that liaison to make sure that people get the right supports that they need at the right time.”
Harnish said they’ve so far logged more than 200 navigator visits and appointments.
When the outreach service started, Harnish said they were already playing catch-up and calling patients from the first three waves. That means they weren’t able to reach everyone before they recently switched to a new online self-screening form.
That means people diagnosed with COVID-19 no longer get a 12-week follow-up call. Instead they’re asked to complete a symptoms survey form three months (or more) after their initial illness.
Harnish said this survey provides valuable information about the COVID-19 recovery of Nova Scotians and also serves as the access point for anyone who requires an assessment with the post-COVID navigator.
This ensures they get help if they’re struggling with long-COVID.
“When we talk to other jurisdictions across Canada, Nova Scotia is big enough but small enough, around that one million mark, that we still have the ability to really understand locally what the COVID experience is, what the long COVID experience is,” Harnish said.
“But the number is not so paralyzing, like somewhere in Ontario, or Alberta, where we can’t support those patients. It puts us in a really unique spot where we really need people to lean into the process so that we can understand locally and be responsive locally to the needs.”
Harnish said experts nationally and internationally are still trying to figure out what long-COVID means from a clinical perspective. Because the narrative, the language, and the literature is constantly evolving, the definition is kept “very vague, very open-ended” when determining if a patient has long-COVID.
“We really look at what the function is of patients, and we meet them where they’re at. We’re not being so prescriptive about how you’re presenting,” Harnish said.
“We see you, we hear you, and we’re here to support you. I really want people to know that. We are here to support these long-COVID patients.”
Harnish said their biggest challenge so far is the lack of public awareness about the supports that are available. With the influx of long-COVID patients expected due to the Omicron wave, Harnish wants to ensure Nova Scotians know they can access help regardless of where they live in the province.
“I think we’re often lost in the acute COVID status and not thinking about the long-COVID status,” she said.
‘We’re all going to know people with long COVID’
When Nova Scotia Health was looking for people previously diagnosed with COVID-19 to join a post-COVID care committee late last spring, Blaikie Hughes agreed to participate. Feeling like she was on the mend and appreciative of the care she’d received while in hospital, she considered it a way to give back.
“It was really great to be in on the ground floor of what they were doing post-COVID care, not realizing I was going to need it,” Blaikie Hughes said.
As a patient family advisor, she serves as one of several “primary research sources,” providing perspectives that help NSH develop services and inform programming for long-COVID patients.
Blaikie Hughes described being able to access post-COVID care as “a huge deal” for Nova Scotians, especially when compared to other jurisdictions. She said the recognition that long-haulers need support and that help is available for them has been “validating.”
With so many Nova Scotians still without a primary care provider and with an unknown number of long-COVID patients likely to need help, Blaikie Hughes believes the online self-referral tool will be invaluable.
“I’m a fundamental believer that awareness is critical, making people aware that long COVID is a thing, is a reality. And that stat, [10% of all patients will develop long-COVID], that’s a big number,” Blaikie Hughes said.
“With this current wave that we’re in, that means there’s a lot of people who could potentially need help. It’s important people know they can get assistance and that there is care available.”
Blaikie Hughes said her hope is that Nova Scotians “spread the word, not the virus.” She urges people to reflect on the fact that COVID-19 does have health implications for some people, and some of them are long-lasting.
She stressed the importance of knowing support is available, adding it could be a family member, friend, or even you who needs help for long-COVID in the weeks and months ahead.
“There are going to be a lot of people in our communities with this. We’re all going to know people with long COVID. It’s kind of like during the first two, three waves, most people didn’t really know a lot of people that had had COVID,” she said.
“But in this fourth wave, chances are you can identify 10 people right off the top of your head you personally know that had COVID. If you know 10 people, based on the (10%) stat, at least one of those people is probably going to develop long-COVID.”
Last August, the province launched an online resource to help Nova Scotians suffering with lingering COVID-19 symptoms long after they’re no longer infectious. The website, MyCOVIDRecoveryNS.ca, also hosts the symptoms survey/self referral form.