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COVID-19 Long-Haulers In Iowa Grapple With Debilitating Symptoms, Uncertain Futures

New treatments for migraines could change how physicians treat patients with the debilitating headaches.
(Photographer is my life/Getty Images)
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Some Iowans are still struggling with persistent symptoms, weeks or even months after first testing positive for COVID-19. For some of these "long-haulers," there is no firm diagnosis or set timeline for recovery, though their illness remains debilitating.

One year into the coronavirus pandemic, Iowa has seen more than 350,000 cases of COVID-19. As of Wednesday, 5,743 Iowans have died of the condition. And scores of survivors haven’t recovered, earning them the name “long-haulers." Weeks or even months after testing positive, some Iowans are still battling debilitating illness and are beginning to wonder if they will ever recover.

‘I wonder when it’s going to go away’

Before Keegan Parrott got sick with COVID, he was trying to qualify for the Boston Marathon. The Ames resident says it was a long shot, but it was possible. Not anymore.

“Everything that I've gone through has been incredibly hard,” Parrott said. “More than once I've broken down about it. And then you read stories of people that have it a lot worse than I do.”

Nine months after Parrott first tested positive for COVID, the former track and field coach now only runs for a couple minutes at a time. He switches off jogging, running and walking, closely monitoring his heart rate so it doesn’t get too high.

It’s one of the many adjustments Parrott has made to try and curb the lingering symptoms long COVID: persistent headaches, chest pain and fatigue.

"Everything that I've gone through has been incredibly hard. More than once I've broken down about it. And then you read stories of people that have it a lot worse than I do."
-Keegan Parrott, COVID-19 long-hauler

“And then I had what people would call relapses where it just gets really bad. And when I get both chest pain and headache really bad, then your anxiety kind of ramps up,” he said. “And I wonder when it's going to go away.”

He doesn’t have health insurance and hasn’t been able to see a doctor during his illness to know if he’s suffered permanent organ damage, as other long-haulers have. Without insurance, he has no way to pay the out-of-pocket costs for a battery of diagnostic tests.

“I've had a headache for over six months. Is that going to have any issues going forward?” Parrott asked. “Am I going to be at higher risk for Parkinson's or Alzheimer's or things like that? We don't know.”

‘I had a hard time completing a sentence’

There is so much that health care providers don’t know about long COVID. But the impacts are already staggering.

While some patients experience mild symptoms, others remain largely bedridden even months after they first tested positive, unable to walk up a flight of stairs, let alone return to work. Some are so short of breath, even speaking is a struggle.

Ben Sponsler of Ankeny first tested positive for COVID in October and has suffered from what providers are calling brain fog, among a laundry list of other symptoms. The term brain fog may sound innocuous, but for some patients like Sponsler, it’s akin to dementia.

“Brain fog has been the, other than the anxiety and everything, it has been the most prevalent. There for a while, I had a hard time completing a sentence,” Sponsler said. “I constantly was asking people like, ‘you know, the…the thing…that does the…the what?’ And everybody's like, ‘I have no idea what you're talking about’.”

"I didn't see it per se, I didn't do it [...] I think I went two or three days without brushing my teeth. And that's really not like me at all. And days, I would just completely forget to eat as well.”
-Ben Sponsler, COVID-19 long-hauler

Sponsler said he’d be at home and find himself wondering: is this my house? Where do I live? He struggled with basic tasks, even forgetting to eat.

“If I didn't lay out like my deodorant, toothbrush, everything to get ready in the morning, I didn't see it per se, I didn't do it,” Sponsler said. “I think I went two or three days without brushing my teeth. And that's really not like me at all. And days, I would just completely forget to eat as well.”

That was on top of his extremely elevated heart rate and blood pressure, and at times debilitating anxiety. He was so exhausted he had to shut down his massage practice for a month. Things got really dark for a while there.

“In the beginning, it was crippling depression and anxiety,” he said. “It was just like, I don't have the will really to get out of bed. I didn't want to eat.”

Early estimates suggest there are thousands of long-haulers in Iowa

So far, about a third of the patients at the University of Iowa’s post-COVID clinic suffer from brain fog and the majority struggle with persistent shortness of breath and disabling fatigue, according to Dr. Alejandro Pezzulo, one of a team of physicians running the clinic.

He says one of the troubling mysteries of long COVID is the number of patients now dealing with debilitating illness who had only mild symptoms when they were first infected.

“We are seeing a good number of patients that had what anyone will call mild disease, that never needed oxygen, that never needed to be hospitalized, that felt at the time like they had a bad case of the flu get, that are now presenting with disabling persistent symptoms,” Pezzulo said, “that in their own words feel a lot worse than the actual acute disease.”

Some long-haulers have struggled to get doctors to take their condition seriously, as providers try to figure out what exactly is behind the constellation of lingering symptoms.

Sponsler says he’s suffered heart damage that providers consider clearly detectable and permanent. But for others, doctors can't definitively say what’s wrong, running rounds of tests that come back negative, even as their patients are clearly not OK.

“We always take them very, very seriously,” Pezzulo said. “And we understand that they're disabling to the patients, and but it's just so hard to come up with how to treat them if we don't know what caused them in the first place.”

“Sadly, I think we will continue to see a trend in which people from underrepresented minorities and a generally oppressed communities will continue to both have higher incidence of COVID-19, worse COVID-19, and probably a worse post-COVID recovery."
-Dr. Alejandro Pezzulo, Internal Medicine professor, University of Iowa

It’s not yet clear how many long-haulers are out there. Some early estimates suggest that 10 to 30 percent of those infected with COVID develop long-term symptoms. In a state where one in nine people has tested positive, that could amount to tens of thousands of Iowans.

It’s also unclear what the litany of impacts, from persistent inflammation to chronic pain to scarring of the heart and lungs, could portend for the health of long-haulers over their lifetimes, and for the country’s overburdened and inequitable health care system writ large.

Pezzulo anticipates that, as with so much about the pandemic, communities of color will be the hardest hit.

“Sadly, I think we will continue to see a trend in which people from underrepresented minorities and a generally oppressed communities will continue to both have higher incidence of COVID-19, worse COVID-19, and probably a worse post-COVID recovery,” Pezzulo said.

Iowa could feel the impacts ‘for decades’

State Rep. Amy Nielsen, D-North Liberty, is one of the scores of Iowans wondering if she’ll recover from long COVID. She tested positive in late January, and has spent most of the time since in bed. These days, she says doing a load of laundry is a big deal for her.

“I wasn't real concerned until I hit four weeks and five weeks and six weeks,” Nielsen said. “And now I'm starting to be a little concerned about what this could mean and especially hearing from other people who have been doing this even longer than me.”

Nielsen believes she was exposed at the statehouse, where the Republican majority refused to implement a mask mandate. She’s angry with GOP leaders for flouting public health recommendations, and for their overall handling of the virus, which has left Iowa with one of the highest infection rates in the country.

"So many people are acting like it's over or it's…normal is just around the corner. We're never going to go back to what we were in January of 2020. It’s just never going to be that way again."
-State Rep. Amy Nielsen, D-North Liberty

“It's a very poor decision economically, the way our governor has handled the pandemic,” Nielsen said. “We're going to see more people need unemployment benefits, or any kind of food benefits, rent help.”

Some long-haulers in Iowa are leaving the workforce entirely and applying for disability benefits, unable to carry on and unsure if they’ll ever recover. Nielsen says the state could be feeling the effects for decades to come.

“So many people are acting like it's over or it's…normal is just around the corner. We're never going to go back to what we were in January of 2020,” Nielsen said. “It’s just never going to be that way again.”

There are still so many unknowns, but some long-haulers are sure: they will never be the same.