When Stephanie Hedrick realized she had trouble breathing, blurred vision, and mental confusion months after overcoming Covid-19, she decided she needed more specialized care than her doctor could provide.
“Not every doctor knows everything,” says the 62-year-old retired teacher who lives in the state of Virginia, in the United States.
After months of rehab therapy at a specialist clinic near Washington, Hedrick was finally able to play in the sea with his five grandchildren for the summer.
The MedStar Covid Recovery Program that she has turned to is part of a new series of clinics treating patients who suffer long-term Covid, a post-infection syndrome that can affect nearly every system in the body.
“The clinic gave me hope that life would go on,” Hedrick said.
Similar clinics were set up in other regions of the United States as thousands of people who had recovered from the new coronavirus still had health problems.
Doctors have known for years that some patients who recover from viral infections develop post-viral syndromes, but the exact cause is unknown.
“Something is going on. It’s clearly not the patients’ imagination,” said Hana Akselrod, co-director of the Covid-19 recovery clinic at George Washington University.
Estimates of long-term Covid-19 cases vary widely from one study to another (from 10% to 35% or even 50%).
After becoming ill, Hedrick had arrhythmias, joint pain, and difficulty breathing.
“It’s like someone takes all your energy, strength, and motivation to do something”, he describes.
Eric Wisotzky, director of the MedStar clinic, strategizes with patients that consist of a “delicate balance” of exercise and rest.
Some even regain their lost sense of smell by inhaling essential oils several times a day.
To improve endurance, Hedrick was advised to do short, easy exercises.
And when she gets confused at the supermarket, Hedrick uses the strategies taught by the speech therapist to slow down and review the shopping list item by item.
She admits she hasn’t completely returned to normal yet, but claims, “I have longer periods of good days.”
Alba Azola, co-director of the post-acute covid-19 team at Johns Hopkins University in Baltimore, on “multiple theories” about the causes of long-term covid, from virus fragments that remain in the body to a breakdown of the immune system.
“I believe there is more than one mechanism at play.”
The US Centers for Disease Control and Prevention (CDC) defines long-lasting covid as a set of “new or ongoing” symptoms that manifest four or more weeks after the acute infection has been overcome, although there is disagreement about exactly what problems can be attributed to the condition.
For many patients, the mere fact that a doctor recognizes their suffering is a relief.
Marijke Sutter, 39, is a nurse from Baltimore who was infected with Covid-19 in March 2020. She believes she was affected by working without proper protective equipment. She resigned when she realized she needed more time to rest.
“Those first four months are a blur,” said Sutter, who reports a lot of tiredness and insomnia.
She had her first appointment with Johns Hopkins doctors in June 2021.
“It’s good for doctors to validate my experience as a patient,” Sutter said.
She claims meditation and yoga were the most helpful tools for her recovery and is now back to work part-time with virtual nursing classes. But she still needs three-hour naps most days.
Rachel Curley, 32, also thinks it was important to move into part-time work.
Curley was infected in December 2020. Within weeks, the fever disappeared and was replaced by extreme fatigue, mental confusion, and dizziness. Her heart rate would skyrocket during simple tasks.
“It was kind of scary,” recalls Curley. “What if I never feel better?” She received the recommendation to avoid stress and increase physical activity, which is working.
There is no single solution, summarizes Hedrick.