COVID recovery clinics in North Texas are helping ‘long COVID’ patients manage lingering symptoms

Jim Doyle was hospitalized with a severe case of COVID-19 in July 2020. He woke up in the middle of the night feeling like he could not breathe and spent two weeks in the ICU at UT Southwestern Frisco. His doctors told him when he was discharged from the hospital that his road to recovery would be tough.

The 56-year-old Lewisville resident came home still needing to use oxygen. Simple things like walking around the house or venturing out into the neighborhood left him out of breath and exhausted.

Then, in August, Doyle’s doctors let him know that a COVID recovery program at UT Southwestern Medical Center might be able to help him get better.

UT Southwestern’s program and another post-recovery clinic with JPS Health Network in Fort Worth were among the first of their kind in North Texas to serve COVID survivors with long-term symptoms, including heart and lung problems, fatigue, brain fog, neurological effects and mental health issues.

Meanwhile, Parkland Hospital’s COVID recovery clinic generally handles internal referrals from its hospital system. These clinics are sometimes known as “long COVID” clinics.

Dr. Juan Cabrera, Doyle’s doctor and the head of the Frisco branch of UT Southwestern’s recovery clinic, said that the clinic has seen nearly 400 patients experiencing these lingering symptoms.

The program at UT Southwestern was originally set up to follow up with patients, like Doyle, who were leaving the ICU. Similarly, the clinic at JPS offers follow-up care for patients who have been hospitalized but not placed in intensive care.

Early in the pandemic, doctors suspected that people who had been severely ill or on ventilators might experience prolonged symptoms.

Doctors said that the medical community has been highly collaborative throughout all aspects of COVID care. “Across institutions and within institutions, COVID blew up a lot of barriers that we’ve talked about as being silos of care,” said Dr. Steven Davis, a pulmonologist, critical care physician and senior physician executive of internal medicine at JPS.

Following these critically ill patients and their symptoms helped the hospital develop a program with specialists in physical therapy, occupational therapy, cognitive therapy and neuropsychology, Cabrera said.

Dr. Surendra Barshikar, the medical director for both the UT Southwestern and the Parkland Hospital Physical Medicine & Rehabilitation COVID Recover Clinics, said that the COVID recovery programs at both institutions focus on individualized and patient-centered care.

UT Southwestern’s clinic is based in the department of physical medicine and rehabilitation. Cabrera said that clinicians from the department were already familiar with patients recovering from critical illness — including heart and lung issues. He said that expertise has helped them with managing long COVID.

Davis said JPS is a multidisciplinary clinic which has continued to take the approach of having patients be evaluated by a pulmonologist, behavioral health specialist, a dietitian, an internist and a physical therapist at the same time on their first visit.

Cabrera said that at UT Southwestern’s clinic, patients can be referred internally or externally by providers and through self-referrals. He added that a majority of patients they are seeing weren’t previously hospitalized. This tracks with more recent research suggesting that even people who were not initially hospitalized for COVID can still have these long COVID symptoms.

For example, scientists at the University of Arizona recently found that nearly 70% of people in their study who had not previously been hospitalized had lingering symptoms at least 30 days following their positive diagnosis with COVID.

This means primary care physicians need to be aware of the prevalence of long COVID in mild or asymptomatic cases when evaluating their patients, said Leslie Farland, one of the authors of that study and an assistant professor in the university’s department of epidemiology and biostatistics.

These individuals were most often experiencing fatigue, shortness of breath, brain fog and anxiety, she said.

Natalie Lambert, an associate professor of biostatistics and health data sciences at Indiana University School of Medicine, has found similar results in her work.

She and her colleagues analyzed electronic health records from more than 1,400 people in California who had never been hospitalized. Their preliminary results showed that being initially asymptomatic for COVID seems to be the strongest predictor for still having symptoms more than 60 days following a positive COVID test.

These researchers have also partnered with Survivor Corps, one of the largest grassroots advocacy groups for people with long COVID. She interacts with these “long-hauler” COVID patients through the Survivor Corps Facebook group and has conducted online surveys with the Facebook group’s members.

“In the Survivor Corps group, it’s still very common for ‘long-haulers’ to report that their primary care physician doesn’t have much knowledge about long COVID,” Lambert said.

Her research has also found that some survivors describe feeling isolated by their experience with long COVID. “They understand that doctors don’t have all the answers,” she said. “They want them to believe that they’re experiencing these symptoms, and if tests come back negative, that doesn’t mean that they were lying.”

Barshikar said that one thing he still thinks is missing from UT Southwestern’s program is a patient navigator, or someone who could help coordinate interactions with multiple health care providers.

That’s why UT Southwestern’s clinic focuses more on the big picture of how a patient’s body is functioning. Cabrera said that doctors are interested in rehabilitation and getting patients back to doing what they used to like to do.

Doyle, who finished the UT Southwestern program in December, is feeling much better today. In February and March of this year, he was even able to go skiing in Park City, Utah. “I skied hard for four days,” he said, “in the morning from about 9 till the slopes ended around four or five.”

He still continues to experience fatigue. But Doyle, who was healthy and active before COVID, is glad to get back to activities he used to enjoy like hiking, biking and fly-fishing.

As the pandemic continues, Barshikar said that it’s critical to study the factors that might put people at greater risk for developing long COVID.

He said that he is not aware of a national COVID registry but that UT Southwestern and Parkland are building their own database of patient symptoms. Collecting such data, experts say, may unlock the mysteries of long COVID and how to treat it.