A year later, patients still trying to heal
Shannon Beatty is the sort of person for whom COVID-19 is supposed to be no big deal — 31 and healthy. Gar y Cardona, in contrast, seemed destined for a harder time — he’s 56 and has multiple chronic health conditions.
But both are grappling with the disease’s effects months after they got sick.
A year after the first cases of the new coronavirus were confirmed in Colorado, patients and the medical community still are dealing with quite a few unknowns about “long COVID,” including what causes some — but not all — of
those infected by the virus to suffer for months and whether those patients can expect to fully recover.
Beatty, a clinical social worker at Children’s Hospital Colorado and a member of the Denver Bandits women’s pro football team, said she got sick in mid-march last year and missed about four weeks of work while she dealt with fever, muscle aches, fatigue and trouble breathing.
Most of the symptoms went away, but the exhaustion lingered.
“I feel like I’m going to bed at 8 o’clock ever y night just to be able to get up and function,” she said.
For Cardona, a Denver resident who is unable to work because of neuropathy caused by Type 2 diabetes, the problem is lingering breathing issues and “brain farts,” as he called the times when he can’t find a word or loses his train of thought.
He was sick enough to spend a few days in an intensive-care unit in December, but avoided going on a ventilator, which can cause more extreme lung and cognitive issues.
“This stuff is serious. Life or death,” he said. “I would never wish this on anybody.”
Symptoms reported by COVID-19 sur vivors var y widely, and can include:
•Fatigue
•“Brain fog”
•Depression and other mood disorders
•Chest pain
•Shortness of breath
•Fast heart rate
•Low oxygen levels
•Trouble sleeping
•Joint or muscle pain
•Rashes
•Hair or tooth loss Some of those symptoms could be caused by damage to small blood vessels, while others may be a result of the body attacking its own tissues, said Dr. Christian Sandrock, a professor at University of California Davis who specializes in respirator y diseases.
It’s likely that patients lumped together as “longhaulers” may be dealing with different underlying issues, and that some people’s symptoms come from multiple causes, he said.
It’s not clear what the odds are that COVID-19 patients will develop lasting symptoms, with estimates ranging from 10% to 50%, depending on how sick the patients had been, and the time frame the researchers examined. No one knows why some patients develop long-term symptoms, though some centers treating long-haulers find a disproportionate number are female.
“Knowing that you’re not alone”
Beatty said she’d never been the type to get sick, not even with the flu. After dealing with the symptoms for months, she went for a series of tests at National Jewish Health, which found her heart was sometimes adding an extra beat — a condition that wasn’t severe enough to rule out exercise, but meant she’d have to be cautious with increasing her activity.
She said it helped to hear that her symptoms were real and other people were dealing with the same thing, even though doctors didn’t have a solution.
“I think I had myself convinced that maybe this is some sort of psychological impact,” she said. “Knowing that you’re not alone is something I wish I had heard a little bit sooner.”
Dr. Sarah Jolley, a pulmonologist and one of the leaders of Uchealth’s postCOVID clinic, said they inidog tially expected to almost exclusively treat people who had been in an intensivecare unit for an extended period, but about 40% of their current patients weren’t sick enough to be hospitalized.
It’s not unusual for ICU patients to need extensive physical therapy and mental health treatment, but seeing prolonged symptoms in generally healthy people with relatively mild symptoms of the virus is new, she said.
“We typically expect young people, particularly young previously healthy people, to recover from viruses pretty quickly,” she said. “We’ve seen prolonged symptoms from other respiratory viruses, but not to this extent.”
Patients come in with different mixes of symptoms, and may see multiple specialists, Jolley said. There’s no one treatment for postCOVID syndrome, but medications and other treatments like physical therapy can help with specific symptoms, she said.
Dr. Raphael Sung, a cardiac electrophysiologist at National Jewish Health, said the batter y of tests they give POST-COVID patients finds a clear underlying cause, such as scarring in the lungs, in about 90% of cases. In the remaining cases, it’s not clear what’s happening, but the patients’ symptoms are real and need to be treated, he said.
Without knowing the underlying cause, physicians have to rely on their clinical judgment about which medications and therapies will be best for a particular patient’s symptoms, Sung said. They’re collecting data to improve their recommendations in the short term, and hopefully to find clues to the root problems over time, he said.
Both Sung and Jolley said they generally see improvement over time, but it can be months or longer before patients feel better.
“It would exhaust me”
Other viruses can cause symptoms that linger long after the initial infection, but the phenomenon hasn’t always been taken seriously.
Jolene Cassel, a nurse practitioner based in Englewood, said the first doctor she saw attributed her postCOVID symptoms to anxiety, but she knew that wasn’t right. She advised people dealing with continuing symptoms to keep looking for answers, even if the first doctor they see dismisses what they’re feeling.
“You know something’s wrong, but you’re being told by the medical people ever ything’s back to normal,” she said. “You’re the best measure of whether this is normal or not normal.”
Cassel had started to feel better about two weeks after getting the virus in April, but her symptoms got worse after a case of shingles in July. Her heart rate sped up for no clear reason until she got dizzy, and she needed a nap to get through a workday. She was 42 and healthy, and previously had run halfmarathons, but felt exhausted and sick after taking her on a slow walk.
“My normal routine — getting up, showering, dr ying my hair — would be the hardest thing I would do all day,” she said. “It would exhaust me.”
Sung, who sees patients with heart rhythm issues, said the most common reason COVID-19 sur vivors come to him is a heartbeat that’s faster than the person’s activity level would dictate. It’s normal for your heart rate to speed up with vigorous exercise, but some people feel their hearts racing after something as simple as standing up, he said.
Many underlying issues can cause a fast heart rate, including weak muscle tissue in the heart, a blood clot in the lungs, or a problem with the autonomic ner vous system, which regulates the body’s involuntar y functions, Sung said.
One theor y is that antibodies against the body’s own tissues could be causing problems with the autonomic ner vous system, but that doesn’t mean that suppressing the immune system is the right answer, he said. It’s possible those antibodies are involved in a cascade of other events in the body, rather than directly attacking the person’s tissues.
Tests over the next few months showed no damage to Cassel’s lungs or heart tissue, but confirmed she was dealing with problems in the autonomic ner vous system. After tr ying several medications, she found some relief from a heart failure drug.
She said she can still feel her heart rate speeding up when she stands up, but it’s not enough to make her dizzy, and she has enough energy to see patients again.
“It’s slowly but surely improving,” she said.