Having trouble describing long-haul COVID? A COVID-19 survivor calls it surreal, scary
The symptoms that linger after a COVID-19 infection can be puzzling and worrisome. Fatigue, breathing issues and brain fog can last for months. And because the disease has been around for only about two years, no one knows how much longer they may last.
WILLMAR — Surreal is one of the words Mark Stier uses to describe his life now. Scary is another.
A year and a half after he contracted COVID-19, he struggles with lingering symptoms.
It’s scary, Stier said in April, because no one can tell him yet how long the occasional crushing fatigue, muddled thinking and other issues will be with him. He first fell ill on a hunting trip in October 2020.
Stier wonders, “What is this going to look like in two years, in 10 years?”
Stier, of Willmar, was quite ill but was able to stay out of the hospital.
David Hallberg wasn’t that lucky. He contracted COVID-19 in October 2021 and was hospitalized for nearly two months, including 17 days on a ventilator and weeks of inpatient rehab.
Six months later, he said, he feels he’s almost back to where he was before, but still gets tired standing or walking.
For people with long-haul COVID-19, there aren’t many answers yet, said Dr. Jayme Van Beek, a family practice physician for Carris Health and Stier’s doctor.
“We’re only two years into this, so we really don’t know what long-term is,” he said.
Definitions of long COVID vary, and so do symptoms. As with the initial infection, symptoms vary widely from person to person and can affect different parts of the body.
Van Beek said someone whose symptoms linger for weeks should see a physician. The most common long-haul symptoms he sees are fatigue, shortness of breath, chest pain and “fogginess.”
Most information is anecdotal at this point. Studies into long COVID are going to take a long time, and a lot of money, Van Beek said.
There’s a variety of other symptoms, and some people develop post-traumatic stress disorder, too. He knows of a person who hasn’t had any sense of smell since 2020. Some people spend six months or longer on oxygen.
While the illness may be recent, treatment involves “a lot of things we already know how to do,” he said, like pulmonary rehab for someone with trouble breathing or occupational therapy for someone with brain fog.
The brain fog does not appear to be dementia, which gets progressively worse, Van Beek said. The long-haul brain fog gets better over time, but it can take a long time.
When Stier first went back to work as dean of students at Atwater-Cosmos-Grove City secondary school, he carried a notebook everywhere, to aid his recall. Without it, he might forget a hallway conversation by the time he returned to his office.
That’s gotten better, and he’s developed more coping strategies, he said, but it’s still a problem some days.
Stier, who was an English major in college, is frustrated with his inability to find the right word in a conversation. That type of thing did not happen before he had COVID, said Lynn Stier, Mark’s wife.
When the couple, both 55, bought a new dehumidifier last year, he carried it to the front door before being hit by crushing fatigue. Lynn carried it to the basement.
Lifting the dehumidifier was not a big deal for her, she said, but his fatigue was worrisome.
The Stiers have always been an active family — walking, hiking, biking. They like walking through the woods looking for antler sheds. Mark has played basketball in a city league.
Now, he’s unsure what he can and can’t do. He asks himself if maybe he’s just getting older, too.
Sometimes, “I just feel yucky,” he said. “I would not wish it on anybody.”
For years, he taught his students how to use mindful breathing to settle down and be ready to learn. Now meditation helps him keep going.
When he was ill, he stayed in the lower level of their home, while Lynn stayed in the upper level. They were supposed to stay apart, but she said she did sneak down regularly to check on him.
At times he was so weak that he had to plan out where he’d stop to rest on his way to the bathroom.
Their goal was to keep him out of the hospital, because he might have been transferred to a hospital hours away. Nebulizer treatments, steroids and meditation helped him keep his blood oxygen levels up.
Questions about the future haunt him, though.
“Where’s the line,” he said. “What is COVID and what’s not? What’s old and what’s not?”
Hallberg’s struggles have been different.
At first, he thought he had the flu last fall. But after going back to work, he got sicker.
When he began having trouble breathing, Hallberg, 60, ended up at the Carris Health-Rice Memorial Hospital Emergency Department. He was sedated, put on a ventilator and transferred to Abbott Northwestern Hospital in Minneapolis.
After 17 days on a ventilator and several weeks at the Courage Kenny Rehabilitation Institute, he came home to be with his wife, Stephanie, and daughter Caroline on Dec. 21, still on oxygen and very weak.
“I don’t remember hardly anything in the month of November,” he said.
At first, he was so weak, “I couldn’t lift my feet off the ground,” he said.
When he returned home, he kept working on his recovery with respiratory therapist Kendra Sandmann at Carris Health Rehabilitation Center. With her guidance, he built up his stamina and gradually stopped using oxygen. He began a new job as a courier for Rice Hospital at the end of February.
In April, six months after he got sick, “I’m pretty close to where I was,” he said, but he’s still working on getting all the way back. He is carrying packages more easily at his job, but extended standing and walking still make him tired.
Hallberg counts himself lucky in some ways. “I never really felt any pain or discomfort,” he said. “I really never felt I had brain fog.”
Hallberg said he’s grateful for the care he received at the rehab center.
“I can’t say enough about how good the therapists are,” he said.
Sandmann returned the compliment and talked about how hard he worked to rebuild his strength.
“It’s very rewarding to see people like David,” she said. She called him an “ideal patient,” who always had a smile on his face.
“I was happy to be here,” Hallberg said.
They started slowly, first exercising while seated, then to a treadmill, starting slow and building from there.
Eventually, Hallberg was exercising 45 to 60 minutes at a time and working up a sweat. “He left here dripping,” Sandmann said.
Sandmann alternates her work schedule between the hospital and the rehab center. It helped her during the pandemic that she saw her hospital patients recovering in rehab, she said.
While Hallberg is a success story, she said, the past two years held a lot of sadness. Some people did not survive being taken off the ventilator, she said, and some haven’t been able to stop using oxygen.
The pandemic is not over yet, Van Beek said, and there are still things people can do to avoid becoming seriously ill.
“If you’ve thought about vaccination, I would do it,” he said. “If you have symptoms, talk to your doctor; we have things we can do.”