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.
“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.”
With the help of patient-driven advocacy, some researchers and hospitals are starting to look into long-haulers’ conditions and figure out how to treat them.
After New York City-based health care system Mount Sinai recovered from the brunt of the city’s first surge of the disease, it established a center for post-COVID-19 care, said David Putrino, director of rehab innovation for the Mount Sinai, speaking to long-haulers’ group Survivors Corps on Facebook Live.
Common long-haul symptoms include an erratic heart rate, palpitations, exercise intolerance, shortness of breath, extreme fatigue and gastrointestinal issues, Putrino said.
Putrino said some who had a COVID-19 infection later experience a condition that is like dysautonomia, a syndrome that causes a dysfunction of nerves that regulate body functions including heart rate.
“Effectively, all of these things, all of these conditions are syndromes. Which means there’s no blood test that tells you that you have them. The physician will count the different symptoms you’re having, and if you check off seven of the nine boxes, you have this syndrome,” Putrino said.
A survey conducted by the Indiana University School of Medicine and Survivor Corps found that symptoms experienced by long-haulers are “far more numerous than what is currently listed on the CDC’s website,” researchers wrote.
“While the impact of COVID-19 on the lungs and vascular system have received some media and medical attention, the results of this survey suggest that brain, whole body, eye, and skin symptoms are also frequent-occurring health problems for people recovering from COVID-19,” according to the report.
O’Brien is also participating in a study being conducted by Mount Sinai on long-haulers.
Though the Centers for Disease Control and Prevention has not released extensive information about long-term effects of the disease, the centers say that “nonhospitalized COVID-19 illness can result in prolonged illness and persistent symptoms, even in young adults and persons with no or few chronic underlying medical conditions.”
“In contrast, over 90% of outpatients with influenza recover within approximately two weeks of having a positive test result,” according to the CDC.
Though at the onset of her illness it was difficult for her to find information or health guidance — and be taken seriously — the condition is starting to be recognized nationally and statewide, O’Brien said, expressing gratitude for the work taking place in the medical community to understand and treat it.
She said she hopes a Utah clinic for post-COVID-19 survivors will eventually be created, as Mount Sinai has done in New York.
New Utah cases
Utah health officials reported the lowest daily number of new COVID-19 cases in two months on Monday, as well as a decrease in hospitalizations.
Monday brought 242 new cases of the novel coronavirus out of 3,268 tests, with a 7.4% positive rate, according to the Utah Department of Health. The last day when fewer than 250 new cases were reported was on June 8.
Now, Utah has confirmed 46,894 cases since the pandemic began out of 601,795 people tested — an overall positive rate of 7.8%.
The rolling seven-day average for new cases is 354 per day, and the positive test rate is 9.6%. Currently, 139 patients in Utah are hospitalized with the disease, 25 fewer than on Sunday.
Two additional deaths due to the coronavirus were also reported Monday: a Salt Lake County woman between ages 65-84, and a Utah County man older than 85, both of whom were hospitalized when they died.
One death was removed from the state’s total for further investigation of its cause, health officials said. The state’s death toll now stands at 364.
Just over 38,000 of Utah’s cases are considered recovered after surviving the three-week point since their diagnoses.