Katy McLean is leading an isolated and lonely life. She can’t go anywhere or see anyone because of what COVID-19 has done to her health.
“It’s discouraging and worrisome. All of our lives are pretty different now with the pandemic, “ said McLean. “But this just takes it to such a different level and it’s very isolating.”
McLean’s isolation began in September when she tested positive for the virus. Her symptoms included cough, shortness of breath, a racing heart and debilitating exhaustion.
Nine weeks after her diagnosis, the 42-year-old is still suffering from those same symptoms.
“Disabling fatigue prevents me from being able to do daily life,” said McLean.
McLean is part of a new group of patients called COVID “long-haulers.” It’s not a medical term but one patients came up with to describe those who have symptoms well after their initial infection.
At St. Paul’s Hospital in Vancouver – Canada’s first post-COVID-19 clinic – the team is trying to understand the long-term effects, and why some patients are so sick.
“I’m seeing a lot of suffering,“ said Dr. Jesse Greiner, director of the clinic.
COVID-19 is a clever disease. The virus looks for ACE-2 membranes in the body. These are doors that open up easily to allow the virus to find a home.
The virus often strikes the lungs first and it was initially thought to be a respiratory disease. Doctors now realize that’s not the case. The virus is aggressive and can also zero in on the heart, liver, kidneys, brain and immune system.
There’s still no explanation for why some patients still feel so sick after they’re not contagious.
“That’s the million-dollar question, “ said Dr. Jane McKay, an internal medicine specialist and part of the team at St. Paul’s Hospital.
“There’s no evidence to say what it is at this point.”
The clinic is studying what’s happening in real time. The 160 patients being treated there are also the backbone of crucial research at the hospital.
McLean is one of them. For the next two years, she will be undergoing a series of extensive tests to understand how she became a long-hauler.
She joins Jaclyn Robinson, who was diagnosed with COVID-19 during the first wave in March. Robinson spent eight days on a ventilator and is still in recovery mode.
“I’m not back to my baseline. I still feel permanently changed from this disease,” said Robinson.
Robinson has a unique lens because she’s also a nurse who works with the clinic.
“I am a nurse. I like to make sense of things. And the hardest part of this whole experience for me is there’s no answers,” said Robinson.
Coincidentally both Robinson and McLean are the same age – 42.
“It’s a little bit too early in the game for me to give you statistics and an age range for who is suffering these symptoms,“ said Greiner. “I can tell you that I’m seeing a lot of people under the age of 50 that are having ongoing symptoms. I’m seeing people over the age of 50 as well.”
The long-hauler condition is so new that it’s impossible to know how many people could be in this category.
Hannah Davis believes she had COVID-19 in March.
At the time she lived in New York, the epicentre of the virus in the United States early on. It was hard to get a test and when she did, it was 31 days after the onset of her symptoms.
She suffers from extreme exhaustion and brain fog.
“I forgot how to look both ways before crossing the street. It felt close to a dementia-like experience. And that was scary,” said Davis.
Davis is now getting treatment from doctors at Mount Sinai Hospital in New York.
She’s still not better and believes there are so many like her living with the effects of a life-altering virus with no clear treatment.
“Thousands and thousands of people are going to be falling through the cracks. Thousands already have in the first wave that haven’t really gotten the help they need still,“ said Davis.
She has turned her concern into action. Davis helped to create the Patient-Led Research group – a team of researchers trying to learn more about the Long Covid experience. It released its first report in May.
Next, Davis says, they are going to focus on neurological issues and brain fog.
“We’ve reached over 4,700 long Covid participants in over seventy countries.”
As for McLean, she is focused on testing and getting better. She hopes one day she can escape the waves of exhaustion that control her life.
“I just hope it’s not going to be too long. You know, I’d love to go for a walk.”
–With files from Krysia Collyer