New UNC clinic seeks to help ‘long haulers’ for whom COVID never seems to go away
Kevin Kaylor was in church one Sunday morning in January when he suddenly found himself short of breath.
Kaylor, 57, had been diagnosed with COVID-19 on Dec. 30 and endured fever, chills and headaches for a few days. But that was all behind him, and he was again running, playing golf and feeling normal when COVID seemed to come back. He’s felt run down and had trouble breathing ever since.
“The strange thing about all this is there’s been a few times in these eight weeks that I wake up and I feel perfect, and I think that I’ve got this licked,” Kaylor said. “And then later on that day it comes back.”
Kaylor has become what’s known as a “long hauler,” someone whose COVID symptoms never went away or who developed a new set of symptoms that persist weeks or months after the initial infection with the coronavirus.
He’s one of about 75 patients who have sought help from the COVID Recovery Clinic that opened at UNC in Chapel Hill last month. The clinic is the first of its kind in the state to specifically address long-term COVID cases that have largely baffled doctors across the country.
Dr. John M. Baratta, a rehabilitation doctor at UNC, founded the clinic with Dr. Louise King, an internist. The goal is to give these patients some hope and help them feel better sooner, Baratta said.
“We don’t have a pill or an injection that can cure long COVID,” he said. “But there are specific things we can do to help address the symptoms to make them feel better or help with their recovery.”
Like COVID-19 itself, long-term COVID is new to medicine and not fully understood. Symptoms include fatigue, shortness of breath, coughing, headaches and difficulty with memory or attention, sometimes referred to as brain fog. And whether due to the illness itself or their inability to feel better, long haulers may also struggle with anxiety, depression or post-traumatic stress disorder.
Recovery from treatment itself can be long
COVID-19 is primarily a respiratory illness that attacks the lungs, making it difficult for patients to get enough oxygen when they breathe. In the most serious cases, patients require a mechanical ventilator to help breathe for them, which usually requires they be placed in an induced coma.
Recovery from that kind of intense treatment can be slow. WakeMed in Raleigh recognized early on that COVID-19 patients who spent time on mechanical ventilators or in induced comas needed special help recovering basic motor and cognitive skills. Last spring, WakeMed opened an outpatient rehab program offering physical, occupational and speech therapy to people who had been hospitalized with COVID-19.
But the UNC clinic is one of a growing number nationwide that address all aspects of long COVID, including fatigue and breathing problems that last for months. Some of the clinic’s patients were first diagnosed with COVID-19 a year ago, Baratta said, and never fully recovered.
More than 900,000 people in North Carolina have tested positive for coronavirus. Studies suggest a sizable number will experience symptoms long after their initial infection. About 30% of 300 people with mild cases of COVID-19 reported symptoms six to nine months later, according to a University of Washington study released last month. And a study published in The Lancet this winter found that 76% of 1,655 patients who had COVID-19 in Wuhan, China, reported at least one symptom six months after being discharged from the hospital.
So far, the UNC clinic has drawn patients from across North Carolina and a few from outside the state (UNC will see anyone who makes the trip to Chapel Hill). Kaylor, a financial advisor, lives on Pawley’s Island in South Carolina and learned about the program from a friend in Durham.
Baratta said long COVID patients can feel misunderstood or dismissed by doctors, who struggle to identify the cause of their symptoms. Because each person’s experience is different, Baratta says he spends a long time with each new patient, either in person or via computer, to understand their symptoms.
“It really does take awhile to have the patient explain their story, and I find it’s best if they’re not rushed into doing so,” he said. “They have a lot to tell, and particularly for people who needed to go to the emergency department or were hospitalized, it can be a really traumatic thing.”
Kaylor, who says his actual COVID experience “was not a big deal,” was impressed Baratta took so much time with him.
“He spent over an hour with me in the exam room,” he said. “I don’t know if you’ve ever had a doctor do that. I haven’t.”
Treatment varies from patient to patient
Baratta said he and King tailor a treatment strategy to each patient. For those with brain fog or lack of energy, they may prescribe a home exercise program to help them recover strength and endurance or perhaps physical therapy. If the fatigue persists, they may order blood tests to look for a cause.
For shortness of breath, they may prescribe breathing exercises. Baratta said a lot of COVID survivors are unconsciously taking shallower breaths, getting less air deep into their lungs and their bloodstream.
“That can cause them to feel more short of breath,” he said. “Essentially, they’re kind of hyperventilating, and they don’t know it.”
For Kaylor, Baratta suggested that 10 times a day or so he breathe into a spirometer, a simple plastic device that helps people breathe more deeply. He also prescribed an inhaler with a combination steroid and a medicine to dilate the bronchial passages, which he uses twice a day.
Kaylor says his breathing has improved.
“I’m 75 to 80 percent good,” he said. “I can exercise a bit, though not the same exertion level I could back in early December before all this happened. I can work still, albeit some days I just knock off at 3 o’clock and go to sleep.
“I feel like it will clear,” he said. “It’s just going to take time.”
For now, the recovery clinic consists of Baratta, King and two nurse practitioners. UNC plans to expand the clinic, so patients can see a psychiatrist, a neuro-psychologist or other specialists during their initial visit depending on their symptoms. It also plans to add physical, occupational and speech therapists as well as a social worker and a nurse care coordinator to follow up with patients.
Baratta thinks other COVID recovery clinics will open around the state as the problem becomes more apparent.
“I do think we’re going to enter a new chapter where hopefully increasing light is shed on long COVID,” he said. “Because I think it’s really affecting people, and I don’t think thus far it’s gotten the attention that it necessarily deserves.”
This story was originally published March 29, 2021 at 6:00 AM.
