Living with long COVID: Woman says she 'felt dead' after 11 ER visits and three heart surgeries. Here's what it's like

Four years after COVID-19 was declared a global pandemic, Yahoo Canada spoke with several people still living with long COVID. Read their stories HERE.

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Joan Fair, 75, retired from her job as a lawyer in April 2020. She and her husband sold their home and furniture and sent their clothes to Grenada in anticipation of a six-month-long trip. Going to Grenada was part of a larger plan to move there one day, a place "near and dear" to the couple who met there in a bar in 1981.

However, two positive COVID-19 tests put a halt to their travel plans. What they didn't realize at the time was that Fair's mild symptoms would eventually lead to over three years of illness, 11 emergency room visits and three heart surgeries.

"There were a lot of losses. I'm a very different person today than I was when it happened," Fair told Yahoo Canada. "There's a whole grieving process that I went through."

Fair has since been diagnosed with long COVID. Combined with a pre-existing heart condition, Fair experienced life-threatening heart palpitations, fatigue, mysterious rashes and runny eyes, among other symptoms. She also had frequent panic attacks and was diagnosed with PTSD (post-traumatic stress disorder). That only represents a fraction of the mental health toll it has also taken on Fair.

"I feel like my first symptom was absolute shock and fear," she recalled.

It's been nearly four years since March 11, 2020, when the World Health Organization declared a global COVID-19 pandemic. According to Health Canada, long COVID, also known as post-COVID-19, affects everyone differently and there have been reports of over 100 symptoms. While some people's symptoms may overlap, overall circumstances in their health can vary.

Worsening symptoms months after 2nd infection: 'Disaster'

Fair and her husband David were staying at an Airbnb when they contracted COVID-19. They ended up staying there for one year and continued to test positive for months. When David's symptoms finally began to disappear, Fairs continued to develop. She eventually sought help from neurologists, heart specialists, cardiologists and a urologist.

In late 2021, she was recommended for a long COVID program in Oakville, Ont. "It was the biggest disappointment of my life," Fair admitted.

She added the health practitioners were dismissive of her symptoms and critical of her for not being able to participate in graded exercise. Fair was eventually dismissed from the program. She also attempted to participate in long COVID studies, but her fatigue eventually left her bedridden.

When Fair contracted COVID-19 for a second time, she described it as "the beginning of what [she] calls disaster."

Fair would sleep with her Apple watch and monitor her heart rate. A normal heart rate typically sits between 60 to 100 beats per minute; Fair woke up with a heart rate of 220. When an ambulance came, Fair and the emergency medical technicians were alarmed by her unchanging and high heart rate. She was on her way to the hospital and hooked up to an IV.

"I coded. They had to bring me back," Fair recalled. "If I hadn't called them I would have died."

From then on, Fair became obsessed with her watch, observing her heart rate jumping to concerning levels throughout 2023, which led to three heart surgeries. Fair said she was living in fear of death and, at times, she "felt dead."

At the end of the year, Fair had a successful heart surgery, a pacemaker and began cardiac rehab. "I lived through it," she said.

Finding hope again

Since her first COVID-19 diagnosis, Fair has been able to see some recovery in her symptoms. She admitted she still suffers from fatigue and brain fog, but the heart palpitations are under control and she can be optimistic about what her next 10 years might look like. "The old me is coming back and I'm finding hope again."

She remains indebted to David, she said, who spent the past few years cooking, cleaning and taking care of her. This was especially important considering the relationships she may have lost along the way; people who thought she was exaggerating her illness.

In between bouts of hopelessness and anger, David and Fair tried to remain as soft-spoken and kind to one another as ever. The couple even had their first proper outing in three years on Valentine's Day in 2024. Though Fair experienced a "crash" that left her sick and bedridden for a couple of days, she said she knows she's feeling better because it didn't last one or two weeks.

Fair and David are now revisiting their Grenada plans. She said she imagines putting "one foot back in Grenada, where it belongs," and eating fish and salad with David on the beach — "and of course, rum," she added.

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