Charlie Cates, 34, of Queens, New York, got a fever in late March. As his temperature climbed to 105.9 degrees, the symptoms piled up: His senses of taste and smell disappeared, he developed a bad cough and he started having trouble breathing. On April 8, with increasingly labored breathing and a fever that wouldn’t break, Cates was admitted to the hospital with COVID-19. He stayed there for 52 days, on a ventilator for 15 of them.
Cates survived his fight against COVID, but he didn’t emerge unscathed. A week before being discharged, Cates had surgery on his right arm for nerve problems caused by the virus. Post-operative pain made it even harder to use the walker he now needed to get around. “I had to limit bearing weight on my right arm for a bit of time after surgery,” he said over email, which he composed using type-to-text because of limited hand dexterity.
At this point, Cates has been in COVID recovery for almost two months. While he’s gotten stronger, lingering neuropathy makes walking difficult, so he uses orthotics, a cane and the walker he got at the hospital. “On better days, my wife and I are able to go for longer walks without experiencing severe pain,” he says. “But there are days when I have extreme pain in my feet despite the lack of physical sensation. The same goes for my hand sensation.”
He continues to see an orthopedic surgeon and a neurologist in person, and virtually meets with a psychologist once a week to deal with the emotional impact of recovering from the virus. “One of the hardest things is coming to terms with simple tasks taking much longer than they used to,” he says. “Showering has become a much more extensive ordeal. What used to take five to 10 minutes now takes at least half an hour.”
Although Cates uses an in-home nursing service for physical and occupational therapy, a number of hospitals are offering telehealth clinics to COVID patients who’ve left the hospital but haven’t fully recovered from the virus. “It’s not just that you go home and hope recovery goes well,” says Aaron Bunnell, assistant professor of rehabilitation medicine at the University of Washington School of Medicine. “This is an option to improve recovery and return to living.”
The virus that won’t go away
Some diseases behave in predictable ways, but COVID isn’t one of them. For starters, the virus presents differently in different patients. Now that it’s been a few months since the first wave of confirmed COVID diagnoses, we’re learning that symptoms often stick around long after patients are out of the hospital or otherwise deemed recovered. Because the long-term consequences of this virus are still unclear, what makes someone fully “recovered” is also open to interpretation.
Many of these aftershocks have previously been seen in patients who get acute respiratory distress syndrome (ARDS), Bunnell says — but perhaps not to the same degree. COVID is a type of ARDS, a condition that causes fluid to build up in the lungs. “It looks like COVID-19 may have an additional layer on top of that. It is likely that these patients experience more severe deficits than standard ARDS patients,” he explains, “but we’re still learning.”
Lingering symptoms can include fatigue, weakness, body aches, shortness of breath, trouble with memory and concentration, and blood clots. Experts can explain why some of these develop, despite having much to learn about COVID recovery.
Being bed-bound for a long time — which some COVID patients are — can cause significant muscle atrophy at any age. Additionally, “because of its effects on the lungs and likely the heart and musculature, people [recovering from COVID-19] have very decreased endurance,” Bunnell says. “After even 30 seconds to a minute of exercise, some are really tired.” That’s if they’re able to exercise in the first place; many remain so weak that everyday self-care activities such as dressing, bathing and going to the bathroom can feel arduous.
So can thinking and other cognitive tasks, to the point where some people complain about “brain fog,” or “COVID brain.” Researchers are actively investigating how COVID-19 affects the brain. One theory is that the virus crosses the blood-brain barrier; another suggests inflammation from the virus causes extensive brain damage. The reported problems might also be related to the fact that COVID can cause low oxygen saturation levels in the blood, even for those without respiratory symptoms. This decreased oxygen can interfere with brain function and potentially lead to difficulties with attention, memory, judgment and coordination.
Then there’s the risk of blood clots, which can start in the legs, spread to the lungs and cause a blockage in a lung artery, says Amit Dhamoon, associate professor of medicine and division chief of general internal medicine at Upstate University Hospital in Syracuse, New York. It’s still unclear why COVID-19 can cause blood clotting, though there’s some evidence that the virus attaches to the endothelial cells in the inside lining of blood vessels. In an autopsy of seven patients published online in late June, researchers found blood clots in almost every organ they looked at. These blood clots can lead to life-threatening complications such as strokes.
Lastly, health experts caution about the long-lasting mental health effects of being hospitalized for COVID. “It’s distressing to be in the ICU and to be put on a ventilator, and some people have limited human contact” while in the hospital, Bunnell says. On the extreme end, patients can experience delirium; others struggle with depression, anxiety or PTSD. “Or it’s just hard to cope with being a strong, fit person before and now being stuck in the hospital in a wheelchair,” Bunnell adds.
Translating telehealth to COVID recovery
Realizing that care for COVID-19 doesn’t stop when a patient is discharged, some hospitals have developed post-COVID care programs that combine the knowledge and resources of varied healthcare workers, such as rehabilitation medicine doctors, primary care physicians, speech therapists, physical therapists, psychologists and social workers. This lets patients get the care their PCPs may not have the knowledge to provide, without having to leave home or risk infecting others.
“Some patients will just be a little short of breath, so we give them an exercise program and education. Others have cognitive deficits, mental health concerns and physical deficits. So we have a comprehensive rehabilitation program,” Bunnell says of the UW Medicine model in Seattle.
Every telehealth COVID recovery program is different. Some are exclusively for COVID patients who’ve been hospitalized, whereas others, including Upstate, also serve those who were diagnosed with COVID and told to fight the disease at home. Symptoms may linger for these patients too, as a July report found that 1 in 5 non-hospitalized COVID patients between 18 and 34 without underlying chronic disease had not fully resumed their normal state of health within two to three weeks.
Upstate also first checks to see if patients have the tools they need to self-monitor their condition. “If they can’t get to a pharmacy, we give them a mask, pain reliever, thermometer and any medication they may need,” Dhamoon says. Although not every program does this, others make sure patients have an oximeter to measure their oxygen levels if they are having problems breathing.
Typically, within about a week after a patient leaves the hospital, someone follows up with them virtually. During this video visit, a provider assesses the patient’s endurance, pulmonary health, cognition and mental health. They also ask about their level of functioning and how they’re doing at home, and address any other concerns the patient brings up. “There’s a lot of uncertainty,” Dhamoon says. “They want to know when to test again, what this means for their family and when they can restart work. So a lot of what we try to address is managing their symptoms as well as these other questions.”
The “video” component of these telehealth visits is important.“We can look to see if someone is breathing heavily or if they look like they are in distress or not,” explains Dhamoon, who sees patients via Upstate University Hospital’s COVID Transitions Clinic program. Being able to watch a person’s chest rise and fall is just as important as looking into their eyes to ask questions about things like if they are experiencing nightmares from being in the ICU, Bunnell adds. “The human component is huge,” he says.
To check endurance, a provider might have a patient march in place for two minutes and shift from sitting to standing several times. If they have trouble, they might get educational materials that explain how to perform exercises like diaphragmatic breathing, to help make sure lung secretions are clearing out and strengthen their respiratory muscles, as well as gradually progressive muscle-strengthening exercises. If someone needs more care, they might meet virtually or in person with a pulmonary rehabilitation medicine doctor for additional breathing exercises and physical conditioning, and with a physical therapist to do extra muscle strengthening, receive assistive devices, learn adaptive strategies and train family members to help out.
If a patient seems to have cognitive impairments, a rehabilitation psychologist or speech therapist can do more extensive testing and provide care. “Speech therapy can help with cognitive recovery and provide some adaptive strategies around any deficits someone has,” Bunnell explains. The provider can also assess one’s job environment. Can someone return, or do they need accommodations such as a limited schedule because they fatigue mentally after four hours of labor? “Sometimes patients with cognitive deficits go back to work, but the workplace may not understand why this [the changes in their performance] is happening and they don’t know it can be overcome,” says Bunnell, adding that this can lead to job loss. When researchers followed up with ARDS survivors after five years, one-third of them hadn’t returned to work and almost half were unemployed or receiving disability. COVID-19 could have similar or worse impacts, Bunnell says.
For mental health, psychologists can teach coping skills or simply offer support as patients talk through what they’re dealing with. “This is an adjustment to a new circumstance,” Bunnell says. “Some need help learning to reframe and figure out how to move on with life and with potentially new deficits and impairments.”
Whatever the case, the patient continues to meet with their recovery care providers until they test negative for COVID-19. If a higher level of care is ever necessary, some hospitals offer home visits, like Cates receives.
Care doesn’t end when you leave the hospital
As with most things in this pandemic, it’s unclear how long these post-COVID clinics will need to exist. “I think we’re in it for a while,” Bunnell says. “But I think there’s a role for this clinic whether COVID stays or goes. We want to continue this type of service for other ICU survivors.”
That will not only help monitor the physical and mental health of patients like Cates who continue to need support in recovery. It also can help prevent life-threatening situations. “One patient of ours was better, so he tried exercising on a treadmill. But then he started coughing up small amounts of blood,” Dhamoon says. “We found a big blood clot in his chest. Without this monitoring, he could have slipped through the cracks.”