McLean’s isolation began in September when she tested positive for the virus. Her symptoms included coughing, shortness of breath, rapid heartbeat, and debilitating exhaustion.
Nine weeks after her diagnosis, the 42-year-old still suffers from the same symptoms.
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“Disabling fatigue prevents me from being able to go about daily living,” McLean said.
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McLean is one of a new group of patients called “long-haul” COVID. It’s not a medical term, but a patient coined it to describe those who show symptoms long after their initial infection.
At St. Paul’s Hospital in Vancouver – the first post-COVID-19 clinic in Canada – the team is trying to understand the long-term effects and why some patients are so sick.
“I see a lot of suffering,” said Dr. Jesse Greiner, clinic director.
COVID-19 is a smart disease. The virus searches for ACE-2 membranes in the body. These are doors that open easily to allow the virus to find a home.
The struggles of the “long-haul” COVID-19
The virus often strikes the lungs first and it was initially thought to be a respiratory disease. Doctors now realize this is not the case. The virus is aggressive and can also concentrate on the heart, liver, kidneys, brain and the immune system.
There is still no explanation why some patients still feel so sick after they are not contagious.
“That’s the million dollar question,” said Dr. Jane McKay, internal medicine specialist and team member at St. Paul’s Hospital.
“There’s no evidence to say what it is at this point. “
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The clinic studies what is happening in real time. The 160 patients who are treated there are also the backbone of crucial research at the hospital.
McLean is one of them. Over the next two years, she will undergo a series of extensive tests to understand how she became a long haul.
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She joins Jaclyn Robinson, who was diagnosed with COVID-19 in the first wave of March. Robinson spent eight days on a ventilator and is still in recovery mode.
“I didn’t go back to my baseline. I still feel permanently changed from this disease, ”said Robinson.
Robinson has a unique lens because she is also a nurse who works with the clinic.
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” I am a nurse. I like to make sense of things. And the hardest part of this whole experience for me is that there are no answers, ”said Robinson.
Coincidentally, Robinson and McLean are the same age – 42.
“It’s a little too early in the game for me to give you statistics and an age range for those who are suffering from these symptoms,” said Greiner. “I can tell you that I see a lot of people under the age of 50 who have persistent symptoms. I also see people over 50. ”
The condition of long haul is so new that it is impossible to know how many people might fall into this category.
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Hannah Davis believes she had COVID-19 in March.
At the time, she was living in New York City, the epicenter of the virus in the early United States. It was difficult to get tested 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 sounded like a dementia-like experience. And it was scary, ”Davis said.
Davis is now receiving treatment from doctors at Mount Sinai Hospital in New York.
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She is still not getting better and believes there are so many like her who are living with the effects of a life-changing virus without clear treatment.
“Thousands and thousands of people will fall through the cracks. Thousands are already in the first wave who haven’t really received the help they need yet, ”said Davis.
She turned her worry into action. Davis helped create the Patient-Led Research Group – a team of researchers trying to learn more about the Long Covid experience. It published its first report in May.
Then, Davis says, they’re going to focus on neurological issues and brain fog.
“We have reached over 4,700 long-time Covid participants in over 70 countries.”
As for McLean, she is focused on testing and improving. She hopes one day that she can escape the waves of exhaustion that control her life.
“I just hope it won’t be too long. You know, I would like to go for a walk.
With files from Krysia Collyer
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