Until five months ago, Luis Santos was a security guard who spent much of his free time biking and bodybuilding. Then in March, the 35-year-old New York City resident contracted COVID-19 — on a crowded subway, he suspects. While Santos was never hospitalized for his illness, he has continued to suffer from a range of debilitating and sometimes frightening symptoms, including trouble breathing, joint pain, memory loss, and fatigue. He’s lost around 40 pounds. And he’s been to the emergency department more than 20 times.
Desperate, Santos took to the internet, where he found the Center for Post-COVID Care, created by the Mount Sinai Health System in New York City. Since June, a cadre of specialists — a neurologist, immunologist, physiologist, and more — has been working to restore his health. Among his main goals is getting back to New York’s parks and museums and being able to see family, who have avoided him for fear of becoming ill.
“I’m making progress, but I’m not the man I used to be,” he says.
Like Santos, many COVID-19 survivors struggle with lingering health issues. Even months after infection, some are plagued by painful and disturbing symptoms that can include shortness of breath, coughing, trouble concentrating, heart palpitations, diarrhea, and difficulty sleeping.
“We know that some people will have severe, disabling, persistent symptoms,” says Lekshmi Santhosh, MD, a pulmonologist and critical care specialist at UCSF Health in San Francisco. “The issue is that we don’t know who that will be. I’ve seen plenty of people who were young and healthy — who were runners, marathoners, skiers, hikers and bikers — some of whom did not have a particularly bad case of COVID but later were debilitated.”
Longer-term problems are fairly common among hospitalized patients. For example, one study at a hospital in Italy found that 80% of former patients still reported symptoms two months after first feeling ill.
But patients with milder cases aren’t immune from the lingering effects of the virus either. The Centers for Disease Control and Prevention recently studied symptomatic COVID-19 patients who had not been hospitalized. The study found that more than 1 in 3 respondents were not back to their usual health 14 to 21 days after testing positive. Among young, healthy people with mild symptoms, 1 in 5 experienced longer-term issues.
These lingering effects could come from a few possible causes, including SARS-CoV-2 itself and the inflammation it triggers. In addition, a major hospitalization can erode physical and emotional strength — a phenomenon worsened by pandemic-related precautions.
“Our visitor policies are very restricted, so patients can feel terribly alone,” says Santhosh. “We have to wear masks and gloves and goggles, so it may be hard for them to connect with their providers. The whole experience can be highly traumatic.”
“We know that some people will have severe, disabling, persistent symptoms. The issue is that we don’t know who that will be.”
Lekshmi Santhosh, MD
Founder of the OPTIMAL Clinic at UCSF Health
In May, Santhosh founded a post-COVID-19 center at UCSF Health called the OPTIMAL Clinic to better understand and address such issues. Dozens of other providers across the country are launching similar clinics to help treat patients hit particularly hard by the novel coronavirus and “long-haulers” who can’t seem to get past its lingering effects.
“In the early days, it looked like there was a group of patients who got sick and got well, and a group of patients who got sick and died,” says Zijian Chen, MD, medical director of Mount Sinai’s Center for Post-COVID Care. “Now there’s an ever-growing group that gets sick and stays sick. That may be tens of thousands of people. The goal now is to figure out how best to get care to as many of them as possible.”
Gearing up to tackle lingering effects
In April, leaders at Mount Sinai noticed two troubling trends: Some patients with mild infections had lingering symptoms weeks after they had “recovered.” And many patients who were severely ill from COVID-19 were left with damage to multiple organs.
“We saw that some patients would need ongoing monitoring of symptoms, and some would need a great deal of medical attention,” says Chen, whose clinic was one of the first in the country.
Although it’s still too early to definitively assess the long-lasting effects of COVID-19, research on similar conditions suggests possible significant and extended impairment. For example, more than a third of patients with severe acute respiratory syndrome (SARS) experienced reduced lung capacity even 15 years after diagnosis.
In terms of COVID-19, a recent survey of more than 1,500 people posted by the grassroots group Survivor Corps noted some 50 lingering symptoms — 27% of which respondents said were painful.
Emerging data point to varied concerns. For example, a post-recuperation study on people whose infections ranged from asymptomatic to severe found physiological changes in the hearts of 78 out of 100 of them. In another study, more than half of 60 former COVID-19 patients who had been hospitalized still had neurological symptoms such as memory loss, vision problems, and mood issues three months later.
“There’s an ever-growing group that gets sick and stays sick. That may be tens of thousands of people.”
Zijian Chen, MD
Medical director of the Center for Post-COVID Care at Mount Sinai
Although not all COVID-19 patients with lingering symptoms spent time in an intensive care unit (ICU), experts find useful data from post-ICU clinics created in recent years to treat patients following ICU hospitalization. Many of those patients face significant complications, including compressed nerves from being bedridden and delusions from powerful pain medications. Of patients with significant post-ICU impairments, one-third never return to work.
Post-COVID-19 programs are drawing from those clinics’ approaches — and assembling their own. At Penn Medicine’s Post-COVID Recovery Clinic in Philadelphia, for example, providers created new COVID-19-related guidelines and trainings for physical therapists that included identifying goals and understanding which measures to track.
Although the work is still evolving, Benjamin Abramoff, MD, the clinic’s co-founder, is hopeful. “It’s very satisfying because many patients say, ‘I’m having all these symptoms, but no one’s paying attention to them. I don’t know where to go or what to do with them.’ Even if there isn’t a lot of physical improvement yet, patients are happy to be connected with the care they need.”
No one knows exactly how many post-COVID-19 clinics exist, but they’re popping up quickly at academic medical centers across the country. “Every week, I have a meeting with someone who’s interested in starting a clinic at their institution,” says Santhosh.
The varied roads to recovery
Patients who arrive at a post-COVID-19 clinic likely begin with a thorough work-up. Intake sessions include questions covering four essential domains — mood, cognition, physical functioning, and respiration — as well as stamina tests such as walking up stairs.
Generally, providers from a clinic’s core team run the initial session. Though core teams tend to include such essential providers as pulmonologists and internists, their makeup varies. For example, at the University of Michigan’s Post ICU Longitudinal Survivor Experience (PULSE) clinic — which now focuses on post-COVID-19 care — the intake also includes time with a social worker, pharmacist, and physical therapist.
After the initial screening, patients may be referred to a bevy of specialists, sometimes in the same clinical space. At Mount Sinai, for example, dermatologists, cardiologists, and several other specialists all work in the same building, and more are just a few blocks away. Meanwhile, in regions struggling with significant coronavirus outbreaks, care is sometimes provided via telehealth.
Once treatment begins, it can take numerous forms. Muscle weakness might require practice using a walker or at-home exercises with resistance bands to build strength. Cognitive issues like memory loss might call for instruction in supports like phone apps that provide medication reminders.
“It’s really good to have someone looking at my whole picture.”
Patient at the Center for Post-COVID Care at Mount Sinai
Alexandra Merlino is a speech language pathologist and brain injury specialist at Penn Medicine. She describes her extensive work with a post-COVID-19 patient who suffers from painful coughing, trouble focusing, and becoming breathless while trying to talk, among other symptoms.
“My treatment plan has involved cough suppression techniques, diaphragmatic breathing exercises, and voice exercises to strengthen respiratory muscles,” she explains. “We’re working on strategies to improve independence in daily tasks like organizing medications. To improve attention span, we would have the patient complete tasks like generating a shopping list while slowly increasing distractions present. The exercises are tailored to each patient’s specific impairments.”
Treating a range of physical and cognitive symptoms is only part of the process, though.
Surviving COVID-19 can bring a massive list of worries and a painful sense of hopelessness. There may be concerns about being able to work, being stigmatized, and never achieving a full recovery. There may be symptoms of post-traumatic stress disorder from the terror of intubation or feelings of panic triggered by an inability to draw a full breath.
“If an individual is struggling with post-COVID depression, we might start by helping identify activities they enjoy. This can be as small as lighting a candle or as big as a trip to the mountains,” explains Alexandra Chadderdon, PsyD, a clinical health psychologist with the Psychiatric Consultation for the Medically Complex Clinic at the University of Colorado (UC), which recently spearheaded the creation of UC Health’s post-COVID-19 clinic.
“If the patient is struggling with anxiety, we might begin by using grounding techniques like deep breathing that help patients stay in the present moment. Since anxiety tends to rise when individuals dwell in the future, the natural refuge is to focus on the here-and-now.”
Many leaders note that a main goal is close coordination between all providers involved. Abramoff points to one example of the need for collaboration: a pulmonologist needs to know when a physical therapist sees a patient getting short of breath during a training session.
Karen Devries, a patient at Mount Sinai, is glad she’s getting care from a multidisciplinary, interconnected team. Since the 61-year-old nurse contracted COVID-19 in March, she’s suffered a range of symptoms — from night sweats to tingling in her feet so bad that she could hardly walk.
“Without the clinic’s guidance, I probably would never have followed up on certain issues,” such as how COVID-19 worsened her existing thyroid condition, she says. “It’s really good to have someone looking at my whole picture.”
An oncoming wave
Creating protocols to treat long-term effects of a condition that no one fully grasps yet is quite complex.
To move fast and well, experts say that clinics need to collaborate. “We don’t really know all the lingering effects of COVID, and we’re still learning about treatments. We’re working in real time to figure out next steps,” says Abramoff. “If we put our heads together as clinics around the country, hopefully we can come up with best practices that will lead to better outcomes for our patients.”
At Michigan’s PULSE, a two-year-old post-ICU clinic in Ann Arbor, leaders have been asked for guidance on how to build and administer a post-COVID-19 program.
“We are very fortunate to have multiple disciplines and resources” available to help COVID-19 survivors, says clinic director Jakob McSparron, MD. Not all institutions are in that position, but he advises moving forward anyway. “You can still do great things, and it’s important to offer these longer-term patients some kind of longitudinal support.”
Meanwhile, experts hope to accumulate insights into COVID-19 recovery over time. “It could possibly be months, maybe even years, before we understand these long-lasting effects,” Chen says.
“We have to put efforts into preparing for what lies ahead. … If we don’t, we are going to run into a very large population of chronically ill people and not enough places to help them.”
Zijian Chen, MD
Medical director of the Center for Post-COVID Care at Mount Sinai
At Mount Sinai, Devries is happy she can contribute to a longer-term surveillance effort — and access ongoing care. “Since we don’t really know what’s coming down the road in terms of COVID recovery, I’m glad someone will watch over me over time.”
Chen hopes to call attention to the need for more hospitals to offer post-COVID-19 care.
“We have to focus on this area of COVID now. We have to put efforts into preparing for what lies ahead,” he says. “If we don’t, we are going to run into a very large population of chronically ill people and not enough places to help them.”