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Programs Help COVID Long Haulers Recover

photo of arianna varas

Feb. 16, 2021 -- Arianna Varas has conquered climbing stairs again.

A year ago, the 35-year-old from Manhattan, NY, would not have considered this a victory. As a hospitality industry worker, she sometimes had three jobs, regularly putting in 12- to 18-hour days, then often meeting friends afterward.

But that was pre-COVID. At the end of March last year, she got hit by tiredness, back pain, and a high fever. She was so short of breath that she couldn’t move around her one-bedroom apartment. On April 1, just 3 weeks after the World Health Organization had declared COVID-19 a pandemic, an ambulance whisked her to nearby Mount Sinai Hospital.

During a long night in the emergency room, a test confirmed what she already suspected: she was positive for COVID-19. Over the next month, Varas spent time in the intensive care unit, on a ventilator for a week. She was transferred to another hospital, then on May 3 to a nursing home for a month. She got home June 3 but wasn't fully recovered.

Fast-forward to February 2021. Finally, she is back to nearly normal, or what she calls ''normal-ish."

She credits her comeback to the hospital care and then the post-COVID recovery program at Mount Sinai, believed to be one of the first such programs in the country. Since it opened in mid-May 2020, other programs have opened around the country, including Cedars-Sinai Medical Center in Los Angeles, Staten Island University Hospital, National Jewish Health in Denver, and Mayo Clinic. Many cite Mount Sinai as a model. Program directors say they are busy; at the Mount Sinai program in early February, 800 patients were taking part, and there was a wait list.

Post- COVID Recovery Programs

Post-COVID recovery programs offer hope to the so-called long-haul COVID patients, or long haulers. While many COVID patients recover after a few weeks, some have lingering symptoms for months, or longer, and may even get new symptoms.

While fatigue is the most common symptom, long haulers may also have chest pain, cognitive changes, lightheadedness, skin numbness, and tingling, says Allison Navis, MD, an assistant professor of neuro-infectious diseases at the Icahn School of Medicine at Mount Sinai

Mental health can be an issue, too, says Kathleen Bell, MD, a professor and chair of physical medicine and rehabilitation at the University of Texas Southwestern Medical Center, Dallas.

Post-ICU syndrome can involve physical, mental, and emotional symptoms such as depression, memory issues, and posttraumatic stress disorder from the experience.

"Even after 6 months out, they are still complaining about memory or brain fog issues, or difficulty exercising," says Thomas Gut, DO, director of ambulatory care medicine at Staten Island University Hospital.

It's hard to pinpoint how many COVID-19 survivors will need these programs. In a recent study tracking more than 1,700 COVID patients in China who had been hospitalized, 76% still had at least one symptom 6 months later -- most often muscle weakness or fatigue and a hard time sleeping.

Even those with mild COVID can have lingering symptoms, says David Putrino, PhD, director of rehabilitation innovation at Mount Sinai Health System, affiliated with its center for post-COVID care.

According to the CDC, one survey found that 1 in 5 previously healthy adults were not back to their usual health 2 to 3 weeks after testing positive.

Even in those never hospitalized, the symptoms ''can be incredibly debilitating, with severe fatigue, post-exercise malaise, dizziness, difficulty focusing, [mental] fog,” Putrino says

Other common symptoms include headache and chest pain that can come and go. "With post-acute [COVID], we are currently tracking well over 50 symptoms that the population is starting to report fairly consistently," he says.

Experts say they aren’t able to predict who will have post-COVID symptoms. "It's a very sobering thought that many of these individuals are still struggling 6 to 8 months later when their initial infection was relatively mild; it was [like] a bad flu," Putrino says.

No universal protocols or guidelines for such programs exist yet, but the CDC recently discussed that in meetings with leaders from programs around the country, Bell says.

Multidisciplinary Teams Are Key

One goal of the post-COVID recovery programs is to provide a central source for all needed health care providers. "We are trying to avoid [the need] for the patient to go shopping for many different doctors," says Rachel Zabner, MD, an infectious disease specialist and co-director of the COVID-19 Recovery Program launched this year at Cedars-Sinai Medical Center in Los Angeles.

The program, like many, starts with a comprehensive in-person evaluation by either an infectious disease or pulmonary medicine specialist.

Depending on the patient needs, referrals are made to other specialists. Those specialists vary by program, and they include:

  • Infectious disease specialists
  • Pulmonary medicine doctors
  • Primary care doctors
  • Cardiologists
  • Kidney specialists
  • Physical and occupational therapists
  • Radiologists
  • Neurologists
  • Therapists and social workers
  • Pharmacists

Borrowing from Other Treatments

Because COVID's "long-haul" condition is so new, health care providers are writing the script, as they go, for how best to treat people who have it. They often borrow from other treatment plans known to work for similar conditions, such as the lung condition COPD (chronic obstructive pulmonary disease) and other heart issues, concussion clinics, and transplant patients.

Likewise, established programs for rehabilitation of lung conditions, focused on exercise training, can help long haulers overcome fatigue and gain muscle strength, other experts have found.

The outlook for returning to normal varies from person to person. "I'm very hopeful," says Zabner of Cedars-Sinai. "I've seen other viral illnesses that people eventually recover from." She expects issues like memory and brain fog to eventually decrease, while the lack of smell is sometimes a lengthy symptom.

Patients with lingering heart issues can also probably improve with treatment, she says. She recalls a middle-age patient who had a very rapid heartbeat who got help from a cardiologist who prescribed medications to manage it and did much better.

Putrino, of Mount Sinai, says the longest one of their patients has been in rehabilitation is about 6 months. Even when patients make good progress, he says, "We have yet to see someone who has said, 'I feel like I did before.''' Even so, he says, ''they are getting a lot of their autonomy back."

Gut of Staten Island University Hospital is more optimistic. "It's not a question of if they are going to recover, but when," he says. "They do improve slowly, over time." While the risk for lingering symptoms is generally higher for those with more severe disease, not always, he says. He has cared for older people with severe COVID, ''and they bounced back within a month." He has had younger people who didn't need to be hospitalized who have had persistent symptoms for 6 months.

Arianna's Recovery

Like many long haulers, Arianna Varas was dealing with multiple symptoms and worsening health, day by day. She had not only physical symptoms but psychological challenges. She remembers in vivid detail the morning a group of doctors arrived in her hospital room. The doctor who stood at the foot of her bed was blunt: "We need to get you intubated. You are dying."

The information was so hard to grasp, she refused at first. She then called family members, including her mother and stepmother, who convinced her to accept the ventilator after they had listened to doctors describing her condition.

"I ended up waking up a week later," Varas says, but more problems had surfaced. Doctors suspected blood clots in her lungs. She had a nerve injury and couldn’t move her right arm. A rash that began on her arm soon spread to her entire body. She had hair loss, a high heart rate, and constant headaches, along with foggy memory issues. "I had to start writing lists," she says, which she never had to do before.

She wasn't able to walk or sit up. After some of her symptoms stabilized, she was transferred to a nearby affiliated hospital and then, when she was weaned off supplemental oxygen, to a nursing home for further treatment. She got physical therapy, occupational therapy, and breathing exercises.

Finally, on June 3, she went home. But she needed more care and rehabilitation. So in July, she began getting treatment at the Mount Sinai post-COVID recovery program and went regularly until November. She continues to go for follow-up appointments.

As her physical health improved, she realized she needed to pay attention to her mental health as well. "I'm on an antidepressant now, which I have never been on," she says. While she says she has had mild depression in the past, this bout is worse.

She has graduated from needing a walker to a cane, and now only on hilly terrain. She takes public transportation to the World Central Kitchen, where she works 4 hours a day, handing out meals to health care workers. "I wanted to give back to the people who helped me." She's hoping to find full-time work again soon.

Through it all, she says, she has been grateful for support from family and friends. Her stepmother moved in for a time to help her -- an ''amazing" support, Arianna says. She's also learned patience. "In the beginning, I was impatient with myself. I would get frustrated because I couldn't brush my hair."

Her physical therapist and occupational therapist remind her to take the long view, to appreciate her progress. "They will say, 'Just remember the day you walked into the clinic. And remember what you couldn't do.'"

Despite all that progress, she says, "I don't know if I will be back to my normal self. I think it's going to be a 'newer' me." She gets hope and help from a support group. "I have to remind myself: I am strong, I am patient, I can do the things I can do."

Survivor Corps, a support and research organization, maintains a list of post-COVID care centers in the U.S.

WebMD Health News

Sources

Arianna Varas, 35, COVID-19 survivor and long hauler, Manhattan, NY.

Webinar, Infectious Diseases Society of America, Feb. 12, 2021.

Thomas Gut, DO, director of ambulatory care medicine, Staten Island University Hospital; assistant professor of medicine, Hofstra/Northwell School of Medicine.

Rachel Zabner, MD, infectious disease specialist and co-director, COVID-19 Recovery Program, Cedars-Sinai Medical Center, Los Angeles.

David Putrino, PhD, director of rehabilitation innovation, Mount Sinai Health System, with its center for post-COVID care.

Kathleen Bell, MD, professor and chair of physical medicine and rehabilitation, University of Texas Southwestern Medical Center, Dallas.

Allison Navis, MD, assistant professor of neuro-infectious diseases, Icahn School of Medicine; Neurology Clinic director, Icahn School of Medicine at Mount Sinai.

Brazilian Journal of Physical Therapy: "Recovery after COVID-19: The potential role of pulmonary rehabilitation."

CDC, Morbidity and Mortality Weekly Report: "Symptom Duration and Risk Factors for Delayed Return to Usual Health Among Outpatients with COVID-19 in a Multistate Health Care systems Network -- United States, March-June 2020."

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