Donn Seidholz's workout schedule before the pandemic would have put most people to shame. The 67-year-old was at the gym five days a week to lift weights, cycle, and row. "Anything to get the heart rate up," he says. But ever since he became sick with COVID-19 in August, the former Chicago White Sox minor-league player hasn't felt like himself.
"I get halfway through my cardio and my brain is like, 'I can't do this.' I get through it, but it's a chore," he says.
Seidholz was at his vacation home in Florida when the pandemic hit. For months he and his wife were extremely careful—staying in as much as possible, wearing masks, wiping down surfaces. They returned home to Omaha, NE, over the summer, and a few weeks later Seidholz couldn't lift his normal set of weights during a workout. He opted to take a COVID-19 test, which came back positive. His symptoms set in about three days later. He lost his sense of smell and taste, felt dizzy, and couldn't think clearly. His wife, sister-in-law, and brother-in-law also developed symptoms.
Seidholz recovered at home, but his illness took a toll, he says. For about four weeks he was so tired during the day he couldn't do much other than sit in bed and watch TV. At night he couldn't stay asleep, constantly waking up and dozing off again. He lost 15 pounds.
Months into his recovery, Seidholz says his fatigue is no longer incapacitating, but he still has bouts of lethargy. And his idiopathic peripheral neuropathy, diagnosed years ago, has become worse. He still can't taste foods unless they are extremely sweet, sour, or spicy, and his mind doesn't seem as sharp. "I used to be able to remember phone numbers with one glance," he says. "Now I can't always remember what day it is." Seidholz knows that if he weren't retired it would be impossible to return to his sales job, which required traveling as much as three times a week.
Most people who contract COVID-19 experience mild symptoms and fully recover. But some, like Seidholz, still feel the disease's effects—confusion, memory and concentration problems, depression, anxiety, fatigue, and muscle weakness—months after diagnosis.
For people who were hospitalized, the impact can be more serious and long-lasting, including damage to major organs. David Boden, 57, a sales executive in the Chicago suburbs, tested positive for COVID-19 in early March and was on a ventilator for 30 days. While hospitalized, he had a severe hemorrhagic stroke that damaged his brain. (Doctors believe it was brought on by the virus.) After months of rehabilitation, Boden had no residual intellectual or cognitive problems—and was back at work in his home office—but he was having trouble seeing on the left side and had stopped driving. And though he can walk with a cane, he's been told he'll never be able to run again.
The effects of COVID-19 cover a wide spectrum, says Benjamin Abramoff, MD, co-founder of a new post-COVID-19 clinic at Penn Medicine, one of more than a dozen such clinics that have been established around the country. "Patients who were critically ill and on a ventilator for a long time have clear manifestations and symptoms related to that experience," says Dr. Abramoff. "But we also have patients who have had mild initial illnesses, who maybe were not even hospitalized, maybe had some shortness of breath or a cough, were treated at home, and then they just don't seem to get better."
It's common for people requiring intensive care, whether for COVID-19 or another condition, to continue to need care once they leave the hospital. "It's a pretty well-known phenomenon known as 'post-ICU syndrome,' which involves lingering cognitive, psychiatric, and physical effects," says Dr. Abramoff. These patients may have neuromuscular weakness, cognitive dysfunction, or even post-traumatic stress disorder related to their time in the intensive care unit.
Research shows that about 30 percent of people who survive their ICU stays have ongoing anxiety and depression, according to Sarah E. Jolley, MD, MSc, assistant professor of pulmonary sciences and critical care at the University of Colorado School of Medicine in Aurora. "I think the recovery of COVID-19 patients is very similar to that of ICU patients we've seen before," says Dr. Jolley, who is part of a COVID-19 recovery unit set up by the University of Colorado Hospital in April.
For Sue Goldberg, 64, a musician in Provincetown, MA, who became extremely ill in March with pneumonia related to COVID-19 and was on a ventilator for three days, the scariest experience was delirium. When she was moved from the ICU to a COVID-19 ward and first opened her eyes after her medically induced coma, she saw the hands on the wall clock spinning backward. "I didn't tell anyone because I didn't want them to put me in the psych ward. I decided to go back to sleep, thinking that when I woke up maybe the hands wouldn't be doing that," she says.
As she hoped, the clock looked normal when she awoke. But she couldn't remember much of what had happened. And during the 10 days she spent in recovery, she kept having moments when she thought she was in the musical Hamilton, the last show she saw before she got sick. "I had to remind myself that I was in a hospital in Hyannis and that the coat on the wall was my coat, not Hamilton's coat, and I was speaking with doctors and nurses, not cast members," she says.
Hospitalization's Impact
Many people who spend time in the ICU experience delirium, whether they have COVID-19 or not, says Dr. Jolley. A medically induced coma and a lost sense of time can cause delirium, and sedatives required to relax patients before they're put on ventilators can make it worse, she explains. "We know delirium is a risk factor for longer-term cognitive impairment, and the longer you have delirium the higher the risk for cognitive impairment a year after being in the ICU," Dr. Jolley says.
The unique restrictions of the pandemic—keeping patients isolated with little social interaction—likely contribute to delirium and leave people depressed and anxious, says Abhay Kumar, MD, a neurocritical care physician at UTHealth in Houston.
Goldberg, who describes her time in the ICU as bizarre, can attest to that. "It didn't help that I never saw anybody's face—just masks, a face shield, and the eyes. It was like The Twilight Zone," she says. The noise of the whirring air in the negative pressure room was loud and made her nauseated. "I wouldn't call what I did with my eyes closed at night sleeping," Goldberg says. "I was really uncomfortable. Everything was starting to hurt."
Nine months into the pandemic, doctors are better able to reduce the risk of delirium. "When COVID-19 first appeared, the situation in hospitals was extremely chaotic," says E. Wesley Ely, MD, MPH, founder of the Critical Illness, Brain Dysfunction, and Survivorship Center at Vanderbilt University Medical Center in Nashville. "We were scared. Now we're back to treating patients with interventions and safety protocols proven over the years to work." Those include getting patients out of bed and moving as soon as possible. To allow them to see their loved ones and thus mitigate feelings of isolation, the Vanderbilt hospital has installed glass walls between beds and visitors in the ICU and given patients electronic tablets so they can participate in video calls.
A study conducted in France and published in the Journal of Infection in August 2020 found that some people with COVID-19 were still experiencing symptoms 100 days after they'd been admitted to the hospital. They reported having fatigue, difficulty with breathing, and problems with memory, concentration, or sleep. People with milder cases also reported feeling sick for months afterward.
"All of the attention has been on the respiratory symptoms of COVID-19, but relatively little has been done so far for patients who have mild symptoms, who were never hospitalized and told to quarantine at home. They recovered, but we don't know what that recovery looks like," says Ayush Batra, MD, assistant professor of neurology and pathology at the Northwestern University Feinberg School of Medicine in Chicago.
It's also unclear how many COVID-19 survivors develop ongoing or severe neurologic symptoms. "That's a question we are desperately trying to answer," says James J. Sejvar, MD, a neuro-epidemiologist at the US Centers for Disease Control and Prevention in Atlanta. Theories abound, including that the virus damages cells and infects blood vessels. For example, people may lose their sense of smell because the virus destroyed nerve cells in the nasopharynx, says Avindra Nath, MD, FAAN, chief of the section of infections of the nervous system at the National Institute of Neurological Disorders and Stroke in Bethesda, MD.
Long-term symptoms could result from the way the immune system responds to infection. "There are two types of immune responses," Dr. Nath explains. "One is the adaptive response, which is a precise attack on the virus. Specific cells recognize the virus and kill it. Then you have the innate immune response, which is like blanket bombing. It hacks away at the infected cells, but it destroys a lot of stuff along with it."
Brain fog, mood disorders, and other complications may be brought on by inflammation from the immune response, agrees Chethan Venkatasubba Rao, MD, medical director of the neuroscience critical care unit at Baylor St. Luke's Medical Center in Houston. Scientists aren't sure if the virus affects the brain directly, "but just because the virus isn't in the brain doesn't mean it doesn't affect it," he says. Strokes may occur from clots caused by the virus thickening the blood and inhibiting its flow. It's also possible that when people have COVID-19 their brains don't get enough oxygen, which causes brain cells to die and neurologic complications to develop, Dr. Rao says.
Healing Journey
Recovery from COVID-19 requires a multidisciplinary approach. A program at Mount Sinai Health System in New York for COVID-19 survivors is a good example. Physical therapists work with patients to help them regain movement and build strength. Neuropsychologists address depression, anxiety, and other aspects of mental health, as well as help with cognitive deficits. Pulmonary rehabilitation specialists and certified breathwork coaches teach breathing techniques to people whose breathing is still labored. Nutritionists counsel people on adopting healthy eating habits to help their bodies return to some measure of normalcy.
The most common symptom for patients is so-called postexercise fatigue, says David Putrino, PT, PhD, director of rehabilitation innovation at Mount Sinai. "When I speak about 'postexercise fatigue,' I'm talking about someone who walks up a half flight of stairs and then has to rest for an extended period of time," he clarifies.
Rehabilitation is different for every person. "It is crucial that the teams helping patients recover have experience in dealing with extreme postviral fatigue and the ability to rule out serious underlying pathology, such as a cardiac condition, to make sure that patients can safely engage in rehabilitation," Dr. Putrino says. And that recovery takes time. "We are counting progress in months, not days or weeks."
David Boden credits rehabilitation specialists with helping him achieve his main goals: getting back to work and functioning on his own at home. He's still working with occupational therapists to learn how to adapt to his vision problems and with physical therapists to regain enough strength to walk up and down stairs.
Donn Seidholz and Sue Goldberg both see psychotherapists to work through their feelings about their bouts with COVID-19. Goldberg says her brain fog is starting to go away, but her intense fatigue persists. "At first I thought, 'Am I ever going to have a life again?' But now I don't let myself sink into it," she says.
Improvement may be gradual, but it doesn't stop, says Dr. Nath, who urges patients with lingering COVID-19 symptoms to ask their primary care doctors to connect them with specialists. "It may even take a year to get better," he says, "but we expect many people will get better."
COVID-19 on the Brain
Early on in the pandemic, doctors reported neurologic symptoms in patients with COVID-19, including seizures, stroke, delirium, and loss of smell and taste. New research sheds light on them.
As reported in the Annals of Clinical and Translational Neurology in October 2020, more than 80 percent of patients who were hospitalized for COVID-19 between March 5 and April 6 at Northwestern Medicine hospitals in the Chicago area showed some type of neurologic symptom. The most common problems were muscle tenderness, headache, encephalopathy (damage to the brain that results in an altered mental state), dizziness, a distortion in sense of taste, and a loss of sense of smell.
A study published in Neurology in October 2020 found that nearly 14 percent of people with COVID-19 who were treated at hospitals in New York City between March 10 and May 20 had neurologic symptoms.
There are reports of people who survive COVID-19 and then have episodes of loss of consciousness, which may be a sign of seizures, says Jennifer Frontera, MD, a neurocritical care specialist at NYU Langone Health in New York and lead author of the Neurology study.
Neurologic damage in coronavirus patients may be the result of not enough oxygen getting to the brain, Dr. Frontera says. People who become sick with COVID-19 should check their oxygen levels with a pulse oximeter and seek medical help if levels drop below 94 percent. "Don't try to tough this out. There may be complications from the virus not yet appreciated," she says.
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To learn about neurology clinics for those who have lingering symptoms after COVID-19, read Neuro Clinics for People Healing from the Coronavirus.
