NASHVILLE, Tenn. (WTVF) — We’re learning more about what’s now known as Long COVID. It's where patients suffer debilitating symptoms weeks or even months after supposedly recovering from COVID.
Although more than a billion dollars is being spent on research, some people with Long COVID say it’s still hard to convince doctors their symptoms are real and it can be hard to find relief.
For years, 72-year-old Louise Salant had her asthma and acid reflux disease under control. But that changed when she got COVID in March 2020.
“I could never get a full breath. I felt I was going to die,” Salant said.
Hit by debilitating fatigue, Louise spent weeks in bed. Her inhalers barely worked. COVID aggravated a condition related to her acid reflux so badly, she had to have life-saving surgery, but her problems persisted.
More than two and a half years later, Louise is like the estimated tens of millions of people affected by Long COVID. And although there’s no test for it, the CDC now recognizes it as an emerging condition and has released guidance for doctors to help treat patients.
“Tell your doctor about your symptoms like fatigue, brain fog, breathing issues, stomach issues," said Consumer Reports Health Editor Kevin Loria. "They may also refer you to a specialist. For example, if you have heart palpitations, they may suggest you see a cardiologist.”
Also, look for a Long COVID clinic at a hospital or university, and seek out support groups. Survivor Corps, Body Politic, and Long COVID Alliance can help connect you with providers - and people experiencing the same thing.
“If your daily activities are substantially limited, you can try applying for disability benefits which may offer some protections, like job leave,” Loria said.
And make sure your doctor knows the diagnostic code for Long COVID - U09.9. That way, insurance may be more likely to cover costs.
While Louise’s insurance covers her new inhaler, her copay is still costly at nearly $400 for a 3-month supply.
Her quality of life over the last 17 months has improved and she can now resume regular activity on a given day, but she has to recover in bed all day the next.
“I made it through and I'm improving. I am grateful to be alive,” she said.
Keep in mind that getting vaccinated and boosted may minimize your risk of Long COVID because you're reducing your chances of getting sick in the first place.