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'It’s terrifying': Arizona's COVID-19 long-haulers face exhaustion and uncertainty

In the summer of 2020, Arizona was one of the worst COVID-19 hotspots in the world. Sebrina Shaw, a lawyer from Cottonwood, was being really careful, but she still caught the virus.

“I had horrible issues with inflammation, body swelling, no smell, no taste, headaches, fatigue," Shaw told KJZZ News. 

Her doctors put her on breathing treatments at home for three weeks while she battled COVID-19. Eventually, she began to recover. But a lot of her symptoms, like the headaches and fatigue, lingered.

Then last summer, a full year after her infection, things got really scary.

“I woke up in the morning and was getting ready for work, and just walking from one side of the house to the other and my right side got heavy," Shaw said. 

Shaw, who is in her early 40s, was having a stroke. Her doctors say it was likely another symptom of long COVID-19.

“It’s terrifying," Shaw said. 

It’s now been almost two years since her COVID-19 infection, but she’s still not back to her old self, she said. “I’ve got bruises on each forearm currently from being poked with an IV at [Barrow Neurological Institute] last week, and I have tests that are ongoing all the time, follow-up appointments." 

She’s not alone. Long COVID-19 is not well understood, but researchers estimate about 30% of people who get infected will develop long-term symptoms. That means there are potentially more than 600,000 people experiencing long COVID-19 in Arizona alone. 

There’s 58-year-old Mike Zissis in Gilbert who tested positive for COVID-19 in January of 2021 and has struggled with on-and-off symptoms ever since.

“It’s like this possession, or this malfunctioning,” Zissis said. 

He used to travel the country as a sports videographer. Now, he said he spends a lot of his time just trying to stay healthy. 

“I’ve had four neurologists, two ENTs, my primary care, my gastro doctor, I’ve been to a speech therapist,” Zissis said. "I've been through a lot in my life, and this is the worst."

Then there’s 57-year-old Vikki Jones of Prescott who has dealt with long COVID-19 symptoms for nearly two years.

“I’ve been in and out of the hospital, I’ve had a couple episodes of what they call TIA, a stroke, or episodes of really high blood pressure," Jones said. 

She used to be health-obsessed — she had a career as a fitness trainer. Now, she says gentle breathing exercises are as much activity as she can handle.

“You never know if you’re going to wake up and have a good day or a bad day," Jones said. "There are days after a relapse when I feel so exhausted or so depressed that you're thinking, 'How much more of this can I deal with?'" 

There are many more Arizonans like them. Shaw is an administrator for a Facebook group for Arizona COVID-19 long-haulers which now has hundreds of members, Zissis and Jones among them.

Around the globe, COVID-19 long-haulers are describing fatigue, shortness of breath, digestive problems and cardiovascular symptoms. Patients who suffered severe COVID-19 infections initially seem to be at higher risk for long COVID-19, but doctors say even mild COVID-19 cases can lead to persistent symptoms.

“If you are talking about half a billion cases around the world and it’s potentially happening in a third of them or so, the numbers become staggering,” said Dr. Janko Nikolich-Žugich, a professor of immunobiology and director of the  Aegis Consortium, a new interdisciplinary initiative at the University of Arizona to researching the pandemic.

He said it’s not necessarily unusual that a virus might lead to long-lasting changes in someone’s body. What’s unique about COVID-19 is just the massive scale of the problem and the fact that the virus is so new. 

“The biggest challenge, always, is how do you get quickly organized to collect data and to collect samples and to collect information?” Nikolich-Žugich said. 

He said the U.S. was unprepared for this pandemic. Hospitals were scrambling just to keep patients alive through the first surges, so clinical research on long-term effects of the virus became a lower priority. Now, as more and more people develop long COVID-19, researchers still don’t have all of the data they need.

“And because we don’t know enough about it, we cannot say that if that happens we’ll be able to take care of you and fix it," he said. 

Nikolich-Žugich and his team are part of a  National Institutes of Health study on long COVID-19. Clinics in the study are  currently trying to enroll more than 17,000 participants nationwide. This summer, researchers plan to begin studying the wide range of symptoms long-haulers are experiencing. Nikolich-Žugich said the other major question he wants to look into is why some COVID-19 patients go onto develop long COVID-19, while others don't. 

Doctors on the front lines are anxious for those answers.

“There is really no rhyme or reason to who is experiencing long COVID,” said Dr. Bethany Bruzzi, executive director of the  Long COVID Treatment Program at Banner Health.

Right now, Bruzzi said, her team of providers uses best judgment based on knowledge of other diseases to treat patients’ symptoms. But she said there are many unknowns.

“The real thing we don’t know right now is how long are those symptoms going to last, obviously, because it’s all new," Bruzzi said. 

She said that’s a troubling question. Many long COVID-19 patients are unable to work. If their symptoms persist for months or years on-end, Bruzzi wonders what the economic impact of that will be. 

“I definitely am concerned that that will impact our ability to keep our businesses running," Bruzzi said. 

But it’s not just businesses. Bruzzi worries the pandemic could be taking a bigger toll on the healthcare system than we realize. Even outside of COVID-19 surges, she said, hospitals have been unseasonably busy.

“There is really no rhyme or reason to who is experiencing long COVID.” — Dr. Bethany Bruzzi, Banner Health

“I don’t think we have enough information to understand how many of those patients who are showing up at the hospital also had a COVID infection, and that this could be potentially long COVID," Bruzzi said. "I don’t believe we’re thinking in that way at this point.”

While doctors try to understand these big unanswered questions about the virus and its potential impacts on the economy or healthcare, long haulers are facing those uncertainties firsthand every day.

Shaw said she feels like she's been trapped in an exhausting, ongoing science experiment for nearly two years. 

“It’s a long time," Shaw said. "It is hard to be a doer and a go-getter and somebody who is really independent and have to ask for help. And it’s hard to be humbled in a way where you can’t do what you once were able to do and have to recognize that."  

She said she, and so many others, are stuck just wondering when, or if they’ll ever feel normal again.

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Katherine Davis-Young is a senior field correspondent reporting on a variety of issues, including public health and climate change.