As Intermountain Healthcare launches Utah’s second dedicated care plan for patients with “long COVID,” doctors who have already been treating long-haulers say they have noticed some patterns in how their illnesses play out.
“I have yet to see somebody with long COVID who was vaccinated,” said Dr. Ellie Hirshberg, an Intermountain critical care physician. “I’ve seen patients who had long COVID and then got vaccinated and are still trying to get rid of some of their symptoms. But I have yet to see somebody with long COVID who was vaccinated first.”
For about two years, Hirshberg has been seeing patients with “long COVID” — that is, people whose symptoms persist at least two to three months after they were diagnosed with COVID-19.
Earlier in the pandemic, COVID “long-haulers” described frustration getting doctors to believe their symptoms were related to the coronavirus. But now Utah has two clinics — one operated by the University of Utah Hospital and the other by Intermountain — for patients to seek help with the hundreds of prolonged symptoms now described in medical literature.
The most common are fatigue, “brain fog,” and heart and lung problems — and some Utah patients have described symptoms so severe they could not walk, drive or bathe themselves. But doctors at the U. and at Intermountain also have reported symptoms ranging from hair loss and distorted taste to “zinging” nerves and vision problems.
Still others are seeking help a little earlier than three months post-infection, for more serious lung problems like pneumonia and blood clots, said Dr. Dixie Harris, also a critical care physician for Intermountain.
And many ultimately suffer from depression and anxiety, Harris said — though it is unclear whether that is directly triggered by the virus or whether it develops as a result of frustration from persistent, debilitating symptoms.
“The COVID molecule seems to affect a lot of different organ systems and in somewhat [more] unusual ways than what traditional medicine is used to diagnosing,” said Hirshberg, one of the doctors for the Intermountain clinic, which announced its “Long COVID navigator” system in a news conference Monday.
“The navigator program really was started to try to bring in all of these multi-specialties and get the patients to the right place in a quick timeframe. A lot of our subspecialty clinics are are booked out typically, and this is a way to get people in ... rather quickly,” Hirshberg said.
Doctors at Utah’s two long COVID clinics described similar patterns among the patients they have seen: most are middle-aged or younger, with no serious underlying health problems, and their initial illness from COVID-19 was not severe.
“I’m seeing ... a lot of athletes, a lot of fully working individuals who the fatigue and the brain fog is so profound that they’re not able to get back to their pre-COVID degrees of exercise and activity,” Hirshberg said. In fact, she noted, long COVID patients who were hospitalized for COVID-19 often are recovering more quickly than those whose initial cases were milder.
“These are people who didn’t have risk factors, not diabetics, not hypertensive, doesn’t have coronary disease, never got very sick with COVID,” Harris agreed. “But it just lingers. All these symptoms continue and continue.”
About 40% of patients with symptomatic COVID-19 are experiencing some sort of “sequelae” — that is, symptoms develop or persist for more than the two weeks it generally takes a person to recover from COVID-19, Hirshberg said.
“We’ve been pretty booked,” she said, echoing reports from the University of Utah’s long COVID clinic. The high numbers could simply be a reflection of how transmissible COVID-19 is, and how many Utahns have had it.
But, Hirshberg said, “it also seems like there’s something a little bit different about the COVID molecule. ... We certainly see much more of this with COVID than we have with any virus previously.”
Some patients recover soon thereafter, but some have had symptoms continue for as long as a year, Hirshberg said.
“This is a good reason not to catch this virus — not to go out intentionally catch it because you just want to build immunity,” Harris said. “I really don’t want to have a headache for the next 12 months.”
The Intermountain doctors said they have noticed one factor in particular that appears to play a significant role when COVID long haulers finally do recover: sleep.
“The good news is most of them, those early patients, they’ve given me feedback that they’re really feeling much better these days. And I think a key component of that is actually sleep,” Hirshberg said. “A lot of these folks are having disrupted sleep. And whether or not that’s from exact changes in their neuro-hormonal pathways that COVID stimulates in the brain or from the overwhelm — really working on figuring out new sleep patterns and getting enough sleep and enough rest has helped a lot of these patients.”
That means “self care” is a big part of recovering from long COVID, Harris said. Patients “have to be really careful about going back to full exercise and really listen to their bodies,” Harris said. “This is not a typical cold. You have to listen to ... how your body feels with activity. Even patients just walking across the room ... can become short of breath and their heart can start racing.”
Anyone with persistent symptoms after a COVID-19 diagnosis may call Intermountain’s long COVID navigator at 801-408-5888. Information about the University of Utah long COVID clinic is at https://healthcare.utah.edu/locations/covid-19-clinic/.