SALT LAKE CITY — On March 8, Lisa O'Brien returned home from Hawaii.
O'Brien, a financial analyst from Roy, loves to travel. But this time, she believes, she brought something home with her.
She began feeling sick on March 11.
Fatigue, body aches — O'Brien said her symptoms were "just the normal stuff that you would get from a respiratory illness." But by day 10, she wasn't feeling any better and was beginning to experience other symptoms, like shortness of breath, as well. That's when she went to the doctor, the first of many visits over the span of months.
Since she had just returned from Hawaii, O'Brien was tested for COVID-19 after her first doctor visit even though tests were not easily accessible at the time. Her test came back negative — as did subsequent tests taken long after the initial illness, when they were unlikely to come back positive even if the virus had once been present — but O'Brien is convinced she had the virus and physicians say it's entirely possible she did.
"Every test we run will have false negatives and false positives," said Dr. Dixie Harris, an Intermountain Healthcare physician working directly with COVID-19 patients during and after infection. "I personally have seen patients with multiple negative COVID tests and then (the) third one, fourth one, is positive." O'Brien said she's heard the same thing from her doctors.
O'Brien continued to experience symptoms throughout the summer and still has some to this day. She describes elevated heart rates, an internal buzzing sensation and even blood clots. And as the illness lingered, O'Brien reached out and connected with others in Utah and across the country who are dealing with the same thing. Some tested positive, some didn't, and they describe a wide range of lingering symptoms. But all of them feel caught in a medical predicament that's widely ignored, poorly understood and constantly second-guessed. O'Brien said one doctor asked her if she was familiar with "the power of suggestion."
"Basically implying that I'm making myself believe that I have all these symptoms," she said.
In Utah, "recovery" from COVID-19 is defined by the health department as being three weeks from diagnosis. Many COVID-19 patients do in fact feel better by that time. But for O'Brien and many like her, the three-week mark has come and gone with little relief, leaving them to wonder: What's going on? And when will this end?
Meet the long-haulers
According to NBC News, the term "long-hauler" originates with the trucker hat worn by Amy Watson of Portland, Oregon, on the day she was tested for COVID-19. Watson started a Facebook group for people experiencing long-term symptoms, something O'Brien tried to emulate with her own Utah COVID-19 Long-Haulers Facebook page.
The page now has more than 200 members, including Tressa Smith and Jennifer Hunter.
Smith, a salesperson from West Haven, got sick back in April. "I was fine one minute," she remembers, "and the next minute, I felt like a Mack truck hit me. I just hurt everywhere."
Smith went to the hospital and tested positive for the new coronavirus. The next three weeks, she said, were "horrible."
47 day update from one of Utah's Long Haulers! She had 30 blood clots in her lungs by day 7! Hospitalized only for a couple days for oxygen therapy & monitoring clots, never intubated.— Utah COVID-19 Long Haulers (@UTc19LongHaul) August 11, 2020
If you still think COVID is like the flu...Read this. 👇https://t.co/FzY8eGsbfc
"I couldn't lay down, I couldn't stand up, I couldn't hold still," she said. "The pain was really bad." And while symptoms have improved, Smith can't shake lingering exhaustion, nausea and shortness of breath. She can't always make it through the workday, she said, even though she is working from home.
"It's not getting better," she said. "It seems like it's getting worse."
Smith said she's seen her doctor about it "a couple of times" and even asked him for an MRI and electrocardiogram. "And he said no, that it's just anxiety, and he wanted me to take anxiety medication and depression medication."
Hunter is a special education teacher who lives in South Ogden. She tested positive for COVID-19 back in June, and remembers the first sign being when she woke up with a headache. Soon she started having trouble breathing. She went to the doctor, was diagnosed with pneumonia and recommended for a coronavirus test.
"A couple days later," she said, "it went to the point where I could hardly breathe at all. I ended up in the ER and found out I had multiple pulmonary embolisms, so I was in the hospital for a few days with that. It's been kind of this roller-coaster ride since then."
Hunter now deals with diminished lung capacity and heart rates that swing from racing to plodding. "It feels like your body kind of has a hard time regulating things," she said.
Both women said they're grateful for the community of O'Brien's Facebook page and others like it. "That's when I found out about the term long-hauler," Hunter said, "and I found out that I wasn't crazy to still be feeling this bad weeks out."
Smith said her mother is a nurse but struggles to understand or know how to help her, as does the rest of her family. "I feel like I'm crazy," Smith said, but her online community reminds her "that I'm not the only one, and that I'm not insane."
The patients aren't the only ones scratching their heads. Doctors still don't have a handle on why the new coronavirus can cause such a wide variety of lingering symptoms for so long.
Harris, the pulmonary critical care physician, went to New York with other Intermountain doctors at the height of its outbreak and now sees COVID-19 patients here in Utah, including follow-ups with those who've been discharged from the hospital.
"This week I've seen half a dozen patients who were in the hospital with COVID who are still having symptoms," Harris said. "It's something we're seeing."
Harris said there's not a lot of scientific literature or study of long-haul COVID-19 patients, though one Italian study did show many hospitalized patients had lingering symptoms. Estimates vary widely as to how many patients will experience symptoms long-term. "We're not sure what's going on," Harris said.
The most common long-term symptom, from her observation, is fatigue. "But there's also shortness of breath, chest pain, muscle aches, joint aches. So that's kind of what we're seeing."
Harris said it doesn't "surprise" her that the new coronavirus creates long-lasting effects. Previous coronavirus diseases like SARS and MERS also created the potential for ongoing fatigue, she said.
"My concern with this virus is, because it hits the blood vessels, it really goes throughout the body," she sad.
David Putrino, a physical therapist with a doctorate in neuroscience, is studying the long-haul phenomenon at New York's Mount Sinai hospital. O'Brien is part of the hospital's effort to monitor long-haul symptoms, and the hospital has also opened a Center for Post-COVID Care.
Putrino spoke to the Survivor Corps Facebook group on Wednesday in a forum for COVID-19 survivors. He said long-haul patients may be experiencing dysautonomia — a condition in which the autonomic nervous system does not work properly — but isn't comfortable saying that's definitely the case.
"There are some people who are coming out and saying it's dysautonomia," Putrino said. "There are other people coming out and saying ME, or chronic fatigue syndrome. There are other people coming out and saying mast cell activation syndrome. There are other people throwing out many other types of autoimmune syndromes and saying, 'It looks most like this.'
"Our position with the Center, and with the physicians that we're working with to manage our long-haul patients, is that we don't really want to name it right now because, effectively, all 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. That's what a syndrome is: It's a collection of symptoms."
For that reason, he said, the Center is more focused on treating symptoms than issuing a diagnosis.
"When people come in and say, 'These are my constellation of symptoms,' we work to address those."
O'Brien said she had "never felt so validated" as after joining the Mount Sinai program. "I could talk freely about all the crazy symptoms," she said. "They didn't dismiss them away." She describes her symptoms for a clinician once a week and tracks them daily.
O'Brien is hoping a local hospital or research institution will take up the study of post-coronavirus symptoms. She's helping with petitions and online groups to raise awareness for the long-haulers and has made numerous media appearances for the cause.
"We're dying for people to listen to us, and take us seriously, and tell us what's wrong. ... There's nobody studying us."