When Yale New Haven Hospital and Yale Medicine launched a program for patients with lingering COVID-19 symptoms, physicians expected they would mainly see those who had been seriously ill.
“Certainly, we thought those who would need us the most would be ICU [intensive care unit] survivors or patients who had at least been hospitalized,” says Jennifer Possick, MD, medical director of the Winchester Center for Lung Disease’s Post-COVID-19 Recovery Program, which has a pulmonary focus but partners with caregivers from various specialties including physical therapy, cardiology, neurology, psychiatry, geriatrics, and ENT (ear, nose, and throat).
But Dr. Possick, a pulmonologist, says the majority of patients at the new program were never hospitalized when they had COVID-19—they were cared for at home and experienced mild-to-moderate disease.
“Out of all people who get COVID, only a fraction become critically or severely ill, with the majority falling in the mild-to-moderate category, and we have seen that bear out in the patients referred to us,” Dr. Possick says. “Although we have seen people with severe disease, those who were the sickest or had protracted ICU stays may still be recovering at rehabilitation facilities.”
Though COVID-19 brings a wide range of symptoms affecting many parts of the body, Dr. Possick says those who come to the program report fairly universal ones. “Almost everyone has shortness of breath. Patients are fatigued and can’t tolerate normal activities or go back to full-time work,” she says. “It isn’t necessarily purely pulmonary issues, either; it may also be due to deconditioning, or direct effects from COVID-19 on other systems of the body.”
Deconditioning, a physical decline in function, can occur after almost any serious injury or illness. Physical therapy (PT) and occupational therapy (OT) therapy, as well as pulmonary rehabilitation—which includes exercise training and breathing techniques to help gain strength, manage routine activities, and reduce symptoms of anxiety and depression—can all help.
“We made the decision right away to partner with physical therapy for the new program, recognizing that outpatient therapy may be an important part of our patients’ treatment plans,” Dr. Possick says.
There is no ‘typical’ disease or recovery
Similar to how COVID-19 symptoms and severity of illness can vary widely from patient to patient, so can recovery. Some patients suffer from a flu-like illness that is unpleasant but does not require hospitalization; others end up in the hospital and need supplemental oxygen; and a minority need ventilators and other intensive care unit support, as well as longer-term care.
Though the typical recovery period for COVID-19 has been thought to be about two weeks, many patients report lingering symptoms that persist well beyond that, regardless of the severity of their illness. Because COVID-19 is a new disease, doctors are learning as they treat and discovering that recovery, much like illness onset, is more complicated than it appears.
Early in the pandemic, Dr. Possick and her colleagues recognized that COVID-19 patients would benefit from specialized follow-up care. “In April, we started to realize that, though our patients who had gotten ill in March were recovering, they weren’t well yet,” Dr. Possick explains. “Primary care physicians were also reaching out to us with questions about patients with lingering symptoms, and we started to wrestle with what optimal follow-up assessment and care would look like. We know from other coronaviruses that there can be long-term pulmonary and nonpulmonary consequences to infections like this.”
A first treatment step for those with lingering breathing troubles is typically pulmonary rehab, some of which can be done at home until patients are able to enroll in formal outpatient pulmonary rehab programs, says Dr. Possick.
“Our goal is to get our patients as functional as possible. We don’t want them to get further deconditioned, which can happen because, to avoid their symptoms, they often become less active. Pulmonary rehab trains people, even those with chronic disease, to manage shortness of breath while engaging in exercise,” Dr. Possick explains. “We are honest with our patients and tell them that we are still learning as we treat them. We hope there are no long-term consequences of their disease and that early detection can lead to early intervention.”
What to expect at a post-COVID-19 check-up
At the first visit, patients are evaluated by a pulmonologist and a physical therapist. They perform pulmonary function testing and determine what types of therapy may be needed.
Additionally, patients’ neuro-cognition skills, behavioral health needs, cardiovascular issues, and sleep troubles are assessed. The Post-COVID-19 Recovery Program partners with teams taking care of patients in the hospital, as well as doctors in the community to identify those at risk of developing post-COVID-19 complications. That includes patients with post-COVID-19 symptoms that last more than six weeks or those who have persistent issues seen from chest imaging. People can also self-refer (make appointments on their own) to the program.
Denyse Lutchmansingh, MD, a Yale Medicine pulmonologist and critical care specialist, says many of the patients she has treated through the program have multi-system issues. “I had a patient who complained of shortness of breath. She had abnormalities on her CT scan and her lung function test correlated that. But I also realized she was having cognitive issues, so we referred her to the Memory Clinic, where those issues were confirmed,” she says. “It was validating for the patient to see that the problems she was having were real—and that they could be addressed.”
Other common complaints among COVID-19 patients at the program include chest discomfort, difficulty concentrating, elevated and irregular heart rates, and persistent joint and muscle aches, doctors say. “People are experiencing a variety of symptoms, some persistent, some waxing and waning, and it has helped them to hear that other patients have similar symptoms and that their experience is not one-of-a-kind,” Dr. Possick says.
All symptoms are evaluated and noted, which is important as the medical community continues to draw a more complete picture of how COVID-19 affects people.
Many of the patients in the program now had COVID-19 four or five months ago. “Their symptoms may have improved, but for most of our patients they are still there,” Dr. Possick says, adding that recovery from COVID-19 is often something that takes months, not weeks.
Ages also vary. “We have seen people in their 30s up to their 80s, with somewhere in the middle being the peak of the bell curve,” she says.
What’s more, sometimes a patient’s tests show no evidence of physical problems that could cause the symptoms, even though patients still have them. “In some cases, that can be reassuring because they had been fearful that their lungs, for example, were permanently damaged,” Dr. Possick says. “This also means that more investigation is warranted to get to the root of the symptoms they are reporting.”
Long-term care of long-term symptoms
A few terms, including “long haulers” and “long-termers” have emerged for patients whose symptoms persist.
Dr. Possick says she has mixed feelings about the terms. “On the one hand, ‘long-hauler’ acknowledges the fact that this is not just a cold or the flu and that people really do have protracted symptoms that have been life-altering,” she says. “On the other hand, the term seems to imply that these symptoms are here to stay, and I don’t like the hopelessness that conveys. We spend a lot of time with people talking about their experience and framing expectations and maintaining a sense of hope that things can improve. This isn’t the end. This is hopefully the middle of their journey back to health.”
Post-COVID-19 Recovery Program patients will be followed for at least a year, or longer if needed. “We think it will take that long for the story to be told, and our hope is that they recover and they don’t need us anymore,” Dr. Possick says. “But we are here for as long as they need us.”