‘Long COVID’ poses challenge for health care systems

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A recent report by medical specialists at Johns Hopkins University about a peculiar after effect of COVID-19 in some patients caught my attention. I had heard about “long COVID”—patients who don’t fully recover or who feel even worse weeks or months after catching the virus. But the reference to postural orthostatic tachycardia syndrome, my condition, was new. 

POTS, a disorder of the autonomic nervous system, presents most problematically in blood pooling in the lower extremities instead of returning to the heart and brain, prompting the heart to work excessively. Astronauts return to earth with it temporarily after their bodies essentially forget about gravity. The condition brings a host of debilitating problems. While there are several known causes for those of us who never leave the planet, many patients don’t get answers and there is no known cure. My doctors’ latest guess has been that my brain had a vulnerability to a stressor, possibly viral.

The condition parallels myalgic encephalomyelitis/chronic fatigue syndrome, another disorder that can be triggered after viral illness and is reported to affect COVID patients. Before COVID, POTS and ME/CFS together were estimated to affect up to 5.5 million Americans. The implications of wider chronic illness resulting from the pandemic would appear worrisome. 

As with most aspects of the COVID outbreak, health care systems are scrambling to meet needs. The National Institutes of Health has committed $1.1 billion to research ways to prevent and treat “long COVID.”

Local hospitals continue to grapple with waves of initial COVID infection. At the same time, the University of Rochester Medical Center has begun an intensive, multidisciplinary post-COVID care program for patients who were hospitalized with severe illness. A few of the nation’s largest systems, such as that at Johns Hopkins, have developed centers to coordinate care for people across a spectrum of post-COVID illness, including those who might have not been symptomatic at first. 

Long COVID—or post-acute COVID, as medical professionals call it—appears to share at least some traits with a syndrome ICU patients can experience after they leave a hospital, says Anthony Pietropaoli M.D., director of URMC’s medical intensive care unit. 

The large influx of seriously ill COVID patients prompted the system to pilot its multidisciplinary critical illness recovery program to quickly provide any needed service to the most vulnerable patients leaving a hospital. 

URMC nursing and social work specialists see patients at home within two days to assess needs, and professionals ranging from pharmacy to speech and language pathology are accessible for needed follow-up. Pietropaoli or one of his medical partners sees these patients by video conference two weeks after hospital discharge. 

“It’s targeted toward not letting people go home and fall apart,” he says.

Pietropaoli has a personal window into this phenomenon, having been hospitalized on a ventilator early in his career after contracting pneumococcal pneumonia, triggering septic shock and acute respiratory distress. The experience prompted his move to pulmonary critical care from general internal medicine.

He and Emily Brigham M.D, the co-director of Johns Hopkins’ post-COVID center, led an April 19 video lecture at URMC on their current approaches to post-COVID care and underscored the need for resources devoted to it.

Brigham, who specializes in pulmonary critical care at Johns Hopkins, noted that patients of the center are starting to skew younger; a growing number have never been hospitalized. 

While there have been anecdotal reports that long-COVID patients improve after receiving a vaccine, data is not sufficient to know for sure, Brigham says. 

“We know so little at this point, and it’s frustrating, but remembering the pandemic is just a year old … we’re trying to figure all of this out.”  

A broader coordination of services for patients on the less-severe end of the spectrum is most likely the next step at URMC, Pietropaoli says. (The Rochester Regional Health system did not respond to inquiries for this article, nor did the Monroe County Health Department.)

“We are still in the throes of managing the acute surges and floods of COVID that’s still going on here,” Pietropaoli says.

For those who might need help but are not as ill as a post-ICU patient, he recommends consultation with a primary care doctor and possibly an online support group such as those for long haulers.

Any information online should be vetted by a medical professional, Pietropaoli emphasizes. And everyone eligible should be vaccinated as soon as possible, he says. 

“There’s a lot of energy and enthusiasm for trying to characterize this and help people who are suffering from these long-term symptoms,” Pietropaoli says of long COVID. “And even now, we’ve been focused on surviving. 

“We want patients to live … and walk out of the hospital. That’s been priority one. As this pandemic goes on and hopefully begins to wane, we’re going to be left with a large number of survivors and … focus turns to quality of life, functional status, return to work. It’s going to take another enormous research effort.”

Janice Bullard Pieterse is a Rochester-based freelance writer.

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