Exploring long COVID Part 2: What's it like to have it?
Among the pandemic survivors are those with long COVID, a phenomenon still not fully understood. What is long COVID, and why is it hard to define? What is it like to have long COVID? In Part 2 of this series, we take a closer look.
One year after first testing positive for COVID-19, Mount Dora resident Tanya Balyeat still has weakened lungs and the short-term memory loss phenomenon known as brain fog. They are the lingering symptoms of long COVID, experienced by about 29% of those who test positive for COVID-19, according to the Centers for Disease Control and Prevention.
Balyeat tested positive in January of 2022 while the Omnicron variant was running wild through Central Florida. She was hit hard by her initial symptoms: fever and an abscess growing in her throat.
PART 1: Why don't we know more about long COVID?
"It was the most painful thing I'd ever felt. Literally every swallow felt like shards of glass in my throat," Balyeat said. "I got morphine every four hours while they were pumping me full of steroids and antibiotics to try to get rid of this thing. But the pain was so intense. I never experienced anything like that."
She spent four days in a COVID unit at AdventHealth Orlando. She took another two weeks off from her job as a self-employed hairdresser.
About a month later, the abscess was gone but she remained short of breath and realized she wasn't getting better. On top of that, she was forgetting words and trains of thought in the middle of speaking.
"I describe it to people that my brain kind of buffers. I'll be in a sentence and it just stops. It's like the little thing going around in circles buffer, buffer, buffer, looking for the next word," she said. "As far as the shortness of breath, I couldn't even make my bed without having to sit down to take a shower. Any kind of small activities around the house just had to be put on hold."
A CT Scan revealed a lot of damage to her lungs.
"I never had asthma problems never had breathing problems," she said. "But I never had anything severe, like, what happened after COVID and how it physically damaged my lungs."
After being told by several physicians they didn't know what was wrong with her, Balyeat was referred in May to AdventHealth’s Post-Covid Clinic, which opened quietly for patients last year after AdventHealth saw a growing need in the area.
Who does long COVID affect?
Long COVID affects all people of all ages, according to the National Library of Medicine.
But what about vaccines? According to the CDC, vaccines do help in mitigating the chances of developing long COVID but it is not a guarantee. However, the CDC also said individuals stood a much higher chance of developing lingering symptoms if they hadn't been vaccinated.
Balyeat was unfortunately an exception. She said she had received her two doses six months before she tested positive.
It's not fully understood why some people retain lingering symptoms and others don't. One group who is more likely to become long-haulers is those with underlying health conditions prior to COVID-19, the CDC said. Balyeat doesn't fit into this group either.
Another common thread among long-haulers is they initially had ‘mild’ COVID-19 and were not hospitalized, according to studies in the National Library of Medicine. Balyeat, again, is an exception to the pattern.
Dr. Kenneth Alexander, chief of Pediatric Infectious Diseases at Nemours Children's Hospital, said long COVID manifests in three varieties.
The first is physical hits to stamina and breathing.
"Just like a really bad flu that lands you in the intensive care unit, it can cause lung disease, and it can cause heart disease. COVID can affect the nervous system, and it can affect the muscles, there are a lot of things that it can do," he said.
The second variety is neurological, and not fully understood. Alexander says one possible explanation could be COVID’s ability to create blood clots in organs like the brain.
"These can be even in microscopic blood vessels," he said. "The second group is hard to study because there were just really learning and there were some studies that came out of South Africa that looked at these microvascular clots. Still the problem there is we don't know first what to do with it and second, how to treat it."
The final variety impacts mental health. Many COVID patients undergo depression after enduring sickness for months at a time, Alexander said.
"The thing that I think gets a lot of people into trouble is that they are looking for a cardiac, endocrine, neurological explanation at the exclusion of also getting appropriate psychological treatment. One does not need to exclude the other," he said. "So what I don't want people to do is view this as something that's dichotomous, [that] it's either a medical issue or a psychiatric issue. The two of them are entwined."
The physical and mental toll
Two weeks ago, Balyeat was diagnosed with bronchitis and took herself to urgent care. Her lungs, beaten by long COVID, left her in a vulnerable position.
"They believe was brought on by the heavy pollen, and with someone in my condition, I'm not able to fight off things as well as other people," Balyeat said. "I just knew I was couch-bound Friday."
Balyeat’s symptoms have taken a toll on her mood. She tries to stay positive, but her lengthy recovery makes it tough.
"I think you know, is this how I have to live the rest of my life? But again, I'm one of the lucky ones. I am able to get up and I am able to go to work and I am able to function," she said.