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Jen Abouzelof took COVID-19 very seriously. The 35-year-old worked from home and was a firm "mask believer," she says. "I thought my risk was low as I never left the house. There's no way, I thought, I'd ever have COVID."
In late August 2020, Jen's lungs felt painfully tight. "I just couldn't breathe." Convinced she was having an asthma attack, she went to University of Utah Madsen Health Center to get tested, only to learn the next day she had COVID-19.
She was devastated and felt like a failure because even wearing a mask, she had still contracted it. On oxygen at home, she didn't improve, her long-term COVID symptoms evolving to include not only chest pain but also brain fog, headaches and interminable fatigue.
The syndrome all but took her life away. She ran her first 26.2 mile-marathon in 2019, and running was a core life activity. But suddenly she was unable to even walk the dog. Even basic household chores were beyond her. "For the last seven months I can't carry my laundry because it makes me nauseous to lift up the basket," she says.
The long-term COVID symptoms are comparable to Postural Tachycardia Syndrome (POTS), a nervous system disorder that can be triggered by an infection. Some doctors believe the virus triggers POTS in some patients, which may explain why COVID-positive patients like Jen develop debilitating fatigue, elevated heart rates and blackouts.
Such post-COVID-19 patients have been labeled long haulers, an informal umbrella term for symptoms that are serious but have very little scientific understanding. University of Utah Health joined forces with community members and patients concerned about the syndrome. They decided to launch a new virtual clinic in summer 2021 focused exclusively on those suffering from the syndrome.
University of Utah Health cardiologist Kevin Shah, MD, first learned of the syndrome back in spring 2020, when early data from studies at hospitals in Wuhan, China showed that some patients who had been hospitalized with the virus developed additional heart problems. "There was clearly a signal that having this virus and becoming very sick with it could potentially lead to you having a heart problem as a result of that illness," Shah says.
From fall 2020 through the early spring 2021 in Utah, Shah saw increasing numbers of patients with long-term symptoms similar to POTS. One patient of Shah's, who he notes, "has never been the same since her viral infection," became a vocal advocate in Utah for those like her battling the long-term syndrome. She and others in similar positions struggled to get traction with the Utah medical establishment. "She and others raised funds to help future community efforts," Shah says. "They wanted the community to know that we have a real medical problem here. 'Please don't downplay how we feel.'"
The seriousness of these problems became increasingly apparent to Jen as 2020 inexorably moved forward to the winter. By Thanksgiving, she realized she was not getting better. Her chest pains were worse and just before Christmas she went into heart failure. "COVID hurt my heart," she says, and she needed to know just how badly. In January 2021, she enrolled in University of Utah's Cardiac Rehabilitation program and has also been seen by cardiologist Kevin Shah, MD. She wanted to know what her body could and couldn't do.
Shah is hopeful that once the multi-disciplinary clinic is open, he and his colleagues will be able to start gathering data to help them better understand whether what's driving the persistent fatigue among long-term syndrome sufferers is cardiovascular or viral infection-related.
The clinic, however, will have a broader focus than simply using data to drill down into the nature of the syndrome. "If patients need support beyond a pulmonologist or a cardiologist, we're hoping the clinic will provide that, for example, mental health or physical therapy support," he says.
Jen is excited for the virtual clinic. "Just knowing that we aren't alone," she says, is so important. Shah agrees. "Clearly there is a lot of value to finding a community of people who have similar issues, and find those same problems and challenges being validated there," he says.
As much as Jen tried being independent, "there comes a point where it is okay to need help," she says. One of the toughest things about having long-term post-COVID symptoms has been not being able to take her four-year-old son and 10-year-old stepson sledding. Instead, she had to watch from a car across the street. "I know for sure there are many times I grieve the lifestyle I used to have. My hope is this new clinic helps people have a centralized place to get care for an illness that we don't know what exactly it's doing but hopefully one day soon, thanks to everyone's hard work, we will."
