Utah ‘long-haulers’ suffering mysterious illness months after COVID-19

SALT LAKE CITY — “More than 99% will survive.”

“It’s just the flu.”

Those are the beliefs about COVID-19 that Lisa O’Brien is tired of hearing as several months after having the disease, she continues to experience serious — and mysterious — health issues.

O’Brien is one of thousands of people across the U.S. calling themselves COVID-19 “long-haulers” — those considered recovered from active infections but still suffering chronic conditions that doctors are only just beginning to look into. Many long-hauler support groups have cropped up on social media, including one created by O’Brien for Utahns, Utah COVID-19 Long Haulers on Facebook.

“A lot of us started realizing we weren’t getting better, and our bodies were doing crazy stuff — heart issues, neurological issues,” O’Brien said.

“It’s not just all about life or death. There’s this middle ground that some of us get stuck in, and it can last for weeks or months, and we don’t know if we’ll ever go back to who we were. There’s just a lot of uncertainty and unknowns, and it’s scary. It’s not like the flu at all. This isn’t like any flu I’ve ever had,” she explained.

The 42-year-old Roy woman first experienced the symptoms of the novel coronavirus after returning to Utah from a trip to Hawaii in March. After being told she didn’t need to get tested and to assume she had the infection — advice many received early in the pandemic when testing capacity was lower — O’Brien finally received a test two weeks after the onset of symptoms. She tested negative.

Though false negatives are common, that has made getting doctors to take her situation seriously more difficult, she said.

“And I had the hardest time getting doctors or anybody here to believe me,” O’Brien said.

She’s not alone. About 40% of the long-hauler population in the Facebook support groups O’Brien belongs to say they tested negative, “so it’s just the tests are not reliable,” she added.

But the former mail carrier — who says that for 20 years she would walk miles a day, who goes on monthly trips and has no history of heart problems or any previous underlying conditions — soon started experiencing blood clots in her lungs and arms, and would wake up with an elevated sleeping heart rate. When she went into the emergency room, doctors often suggested she was simply experiencing anxiety — until they ran tests and found the blood clots.

“There’s some people in my group that used to run miles a day, and now they can barely go for walks. Some just have the fatigue, some are still having the heart issues and neurological issues. And we really have like nowhere to turn, because our general practitioners don’t know what to do with us,” O’Brien said.

“We’re kind of the ones that were managing our symptoms at home, so we’re not in any statistics,” O’Brien said. “We’re kind of lumped in with the recovered stats, but we’re not really recovered.”

Jennifer Hunter, a 39-year-old Utah schoolteacher, has also faced a long road recovering from the disease. After being diagnosed with pneumonia and receiving a positive test for COVID-19 in June, she soon found herself in the hospital with a pulmonary embolism, which is when the lungs’ arteries are blocked with blood clots.

“It doesn’t matter if you’re eating right and exercising right … you still can catch it. You don’t know how it will affect you,” Hunter explained.

Although she has an autoimmune disease, Hunter said she had that under control before COVID-19 hit, and the coronavirus has now exacerbated her previous condition.

“It was something I had never experienced before, so I definitely knew something was going on,” Hunter said. “It’s been a roller coaster ride since then of different symptoms.”

Hunter has needed to be on oxygen and is just getting to the point where she can be “weaned” off it, just as she is about to return to the classroom.

In addition to the blood clots, Hunter has also experienced shortness of breath and heaviness in the chest. Like O’Brien, Hunter’s heart rate will also skyrocket and then rapidly drop.

Two days before she got sick, O’Brien had been training for a half marathon and ran 10 miles. Doctors now tell her it will take at least six months before she should run again in order to give her lungs time to heal.

But finding support through the Utah long-haulers’ group has helped her navigate the illness. “It was great to know that there’s that support there and the resources and answers, it’s a…

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