Long COVID Remains An Uphill Battle For Many Americans: 'Every Day, Getting Up Is A Fight'

Although COVID-19 cases and hospitalizations have decreased, long COVID remains a constant presence in the lives of many Americans.

Long COVID has affected millions of people globally, with individuals reporting a range of symptoms including fatigue, lung issues and neurological problems like brain fog. 

While evidence indicates that most individuals substantially recover within a year, recent CDC data showed it has played a role in over 3,500 deaths in the U.S. from January 2020 through the end of June 2022. 

Treva Taylor has been facing an uphill battle since her coronavirus diagnosis in January 2021, which nearly took the 57-year-old's life. 

"It was scary because I remember my eyes being open, but everything was black," Taylor said. "I remember the nurse saying to me, 'You have to fight. The person next to you is dying. And if you don't, you're going to be in this body bag. You have to fight.'"

Now, she wants others who are suffering to know that long COVID is "very real."

"It's not something that's in your head. Trust me, I would do anything not to be like this. Every day, getting up is a fight. Every day, to breathe is a fight," she said. "But it's worth the fight because I love people and people give me energy. And as long as I can show a fight, I know that there's a chance."

Taylor's case is so severe she requires oxygen to move around. For the past two years, she has been receiving treatment at NYU Langone's Post-COVID Care Program, alongside 1,000 other patients who are under the care of pulmonologists such as Dr. Rany Condos, who said that 25% of patients may end up with long COVID. 

"And if you're talking about millions and millions of patients, you can imagine that that's a large number," Condos said. 

According to Condos, Taylor's case is a fairly typical representation of patients who had a severe case of COVID. In Taylor's instance, the disease damaged her lungs, and she is now being assessed for a potential lung transplant. 

Some other patients with long COVID did not have severe COVID, but instead a cold that eventually subsided. A few months later, however, they were unable to leave their beds. 

"Most of the long COVID patients that we're seeing are those that were healthy and now have lingering symptoms," Condos said. 

Last week, a study published in the Journal of the American Medical Association, a peer-reviewed medical journal, indicated that COVID vaccination reduces the risk of developing long COVID by at least 50%, providing encouraging news for some patients. 

At the time of her hospitalization, Taylor had not received the COVID-19 vaccine. She had been scheduled to receive her first dose on the same day she was rushed to the hospital. She is now unable to work. 

She describes her condition as being up and down like a rollercoaster, with good breathing one minute and difficulties the next. If she has a particularly active day, she can be bedridden for up to 48 hours. 

Taylor undergoes breathing tests every six weeks that measure her lung function and monitor her progress. According to Condos, programs like this aid in the healing process and assist patients in regaining some sense of normalcy. 

Many patients have been told by their primary care doctors that they were crazy and there was nothing wrong with them, he said. 

"And they felt very unheard," Condos said. "And I think what we're trying to do is provide a place for them to be heard."

First published on March 29, 2023 / 9:45 AM

© 2023 CBS Interactive Inc. All Rights Reserved.