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New Recovery Programs Target COVID Long-Haulers

— Pulmonologists, cardiologists, neurologists, psychiatrists, and more join to get patients on their feet for good

MedpageToday
People in protective masks exercise at a rehabilitation center

Michael Reagan first got sick with COVID-19 on March 22 and spent the next 2 months in and out of Mount Sinai Hospital in New York City. He had pneumonia, scarring in his lungs, and blood clotting issues, and while he was never put on a ventilator, he came close.

By the end of May, the 50-year-old felt well enough to go for a jog -- but that unexpectedly set him back severely. He started having seizures, tremors in his left hand, numbness, and muscle weakness on the left side of his body, and involuntary muscle movements on the left side of his face.

He also suffered memory loss and even had trouble navigating around his neighborhood. Then there was the debilitating joint pain in his elbows and knees, and his heart rate would sometimes skyrocket to 200 beats per minute with the slightest exertion.

"Before all this happened, I was always on the go," Reagan told 鶹ý. "I played the cello, I was into biking, rock climbing, horseback riding. Now some days I can't even get out of bed. Taking a shower and getting dressed feels like a superhuman effort."

Reagan is among a growing number of COVID-19 "long-haulers" who suffer with long-term and often varied consequences from the virus. These patients often require care from a gamut of specialists, including pulmonologists, cardiologists, neurologists, rheumatologists, and psychiatrists.

That's why health systems in the hard-hit greater New York area have launched COVID-19 rehabilitation and recovery programs, to serve as a medical home for patients with myriad complications who require coordinated care.

Reagan is a patient at the . There's also the at Hackensack Meridian Health in northern New Jersey, and has tapped into its established cardiopulmonary rehabilitation program to tailor care for patients recovering from COVID.

Need for Multidisciplinary Care

Zijian Chen, MD, leads Mount Sinai's COVID-19 recovery program, which is currently treating about 400 patients. At their first visit, patients are evaluated by a primary care physician for symptoms and referred to the appropriate specialists, Chen said.

"Right now, we have almost every medical specialty working with the program," Chen told 鶹ý. "We're looking at a broad spectrum of disease. Some may have permanent lung fibrosis ... that may last for the rest of their lives. Others have reactive airway or inflammatory problems that will subside over time. It's unpredictable. It's the same for cardiac symptoms and neurological symptoms."

At Hackensack Meridian's COVID Recovery Center, primary care physicians develop a customized care plan and connect patients with specialists. Pulmonologists there have been treating patients with shortness of breath and exertional fatigue; cardiologists are treating heart function and rhythm disorders, and neurologists are treating comorbidities arising from strokes and clotting disorders, as well as neuropathy and cognitive impairment, according to program chair Laurie Jacobs, MD.

Jeffrey Fine, MD, of NYU Rusk Rehabilitation, said a large proportion of their post-COVID patients are coming in for activity intolerance due to lung injury.

"Even if patients are weaned off oxygen by the time they go home, they need structured rehabilitation to regain lung elasticity," Fine said. "We treat patients like athletes. We're not training them to run a marathon, we're just trying to help them participate in their lives again without dyspnea being a limiting factor."

Patients whose chief complaint is neurologic, whether it's cognitive impairment, fatigue, or neuropathy, "need rehabilitation and recovery as well," Fine said. "They may not require a formal cardiac or pulmonary rehab, but they still need to work on focus, attention, and reconditioning."

Though the long-term neurological effects of COVID have been harder to pin down, Fine suspects they're tied to the severity of immune dysregulation. "As those inflammatory mediators reconcile in recovery, the disruption of normal underlying signaling still takes quite some time to reset," he said.

Taking patients' concerns seriously is important, all three program leaders said -- and that's not hard to do, as they are watching many of their fellow clinicians struggle with post-COVID complications.

"I have colleagues affected by COVID-19 who have persistent symptoms," Chen said. "These are some of the hardest working and most honest people I know. I don't see anything on their scans, but I believe them. We have to believe our patients to make sure we're not neglecting them."

Jacobs said four physicians at Hackensack Meridian have ongoing COVID-related health issues. "One has tremendous fatigue. Another has cardiac rhythm problems and keeps getting dizzy and might pass out. Another has strange migratory arthritis and fatigue, and another has shortness of breath."

Behavioral health is an important component of the recovery programs as well, leaders said.

"The physical symptoms are important but we have to take a look at the mental toll COVID takes on these patients," Chen told 鶹ý. "There's an increased incidence of depression among these patients, so our psychiatric and behavioral health services are important for them."

Mount Sinai is creating a registry of COVID long-haulers for further study. Chen said his team spoke with the health system's World Trade Center victims program when they were developing the COVID recovery center. Between 7,000 and 8,000 COVID patients were treated in the Mount Sinai system, and Chen's team is assessing symptom surveys to determine which of those patients may benefit from their post-COVID care program.

Range of Patients in Recovery Programs

While some patients in these recovery programs never went to the hospital for treatment, others had a long hospital stay, followed by inpatient rehabilitation. That was the case for one of Fine's patients, "Mark" (he asked not to be identified).

Mark was in excellent health before COVID, Fine said. He exercised regularly, ate a vegan diet, and was lean, weighing in at 142 pounds.

Despite that, he landed in the intensive care unit for a month, with pulmonary embolism, pneumonia, and severe inflammation. He was moved on April 29 to inpatient rehabilitation, where he stayed until discharge on May 15. By then, he had dropped down to 115 pounds.

When he returned home, where he lives alone, Mark couldn't go more than 5 minutes without supplemental oxygen. It was difficult to cook or clean, he said. Eventually, he enlisted home care and had meals delivered.

His outpatient rehabilitation focuses on improving lung function. He's also taking a course of prednisone, which he says seems to be helping.

"I walked two miles Saturday morning, for the first time, to get my flu shot," Mark told 鶹ý. "It's a dramatic improvement, but it's still a question mark. We don't know for sure what the outcome will be when the steroid stops."

His NYU cardiologist is also watching his paroxysmal atrial fibrillation, which developed as a result of his illness. He did have congenital heart murmur with valve regurgitation before COVID, but the afib was likely a result of deconditioning, his doctor told him.

Mark is now at 128 pounds, fighting to get to 130 so that he's no longer classified as underweight.

"He was living the type of healthy lifestyle we recommend for most patients," Fine said. "Even someone like him can have lingering effects depending on their pathophysiology."

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    Kristina Fiore leads MedPage’s enterprise & investigative reporting team. She’s been a medical journalist for more than a decade and her work has been recognized by Barlett & Steele, AHCJ, SABEW, and others. Send story tips to k.fiore@medpagetoday.com.