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Annie Jarman shows a new inhaler her doctor suggested she try at her home in Murray on Tuesday, Nov. 24, 2020. Jarman tested positive for COVID-19 on July 8, about a week after symptoms started, and still has lingering symptoms.

Kristin Murphy, Deseret News

Recovery remains elusive for many Utah COVID-19 long-haulers

Though their numbers aren’t reflected in most public health statistical charts, an estimated 10% to 25% of COVID-19 survivors struggle with long-term symptoms — some months after a diagnosis

SHARE Recovery remains elusive for many Utah COVID-19 long-haulers

Every time Annie Jarman can’t catch her breath or feels the fluttering in her chest, she wonders if this is how her life will end.

Will her life end because pushing a vacuum was just too much for her COVID-19-ravaged body? 

Will it be a walk through the neighborhood, helping her children with schoolwork, or cooking a meal? What will it be that pushes her now unreliable heart and lungs to the breaking point? 

She doesn’t know. No one does. Not even her doctors.

And that uncertainty only adds to the fear and anxiety that accompany symptoms ranging from heart and lung problems to profound fatigue months after she thought she’d recovered from COVID-19. As difficult as it is to live in the remnants of her former life, she has struggled through darker moments on this unexpected journey. 

“I remember nights, just sobbing, because I didn’t know if I was ever going to hug my kids or kiss my husband or do any of that again,” she said of her seven weeks in isolation battling coronavirus symptoms.

Jarman is what many in the medical profession are calling a “COVID long-hauler,” which is essentially a patient struggling with long-term symptoms due to COVID-19. The Murray woman is among two dozen Utahns who shared their stories with KSL-TV and the Deseret News in an effort to shed light on what life is like for those living in a kind of COVID-19 no man’s land.

“If I was going to have some kind of episode where it suddenly comes on, which happens, where I would have to call ... 911, end up in the hospital and not come home. Like I still have worries about that,” Jarman said. “It’s the fear of not knowing.

“And I just wish people would take it more seriously. Because this is not a fun way to live. I would not wish it on anybody. And like I said, I have a very mild case. I feel very blessed.”

A sob strangles her voice as she talks about never feeling, not for a single day, like the active, healthy woman she once was.

“I’ve never had a day where I’ve felt, ‘OK, I feel good today. Today is great. I don’t feel bad at all,’” she said. “So yeah, I’m definitely worried that I will never be recovered, that this is a chronic condition that is going to be part of my life.”

Long after public health officials consider Jarman and others “recovered,” many still struggle with breathing issues, extreme fatigue, blood clots, brain fog, blindness, no sense of taste or smell, erratic heart rates, hair loss and many other issues. Many long-haulers had mild cases of COVID-19, a few survived hospitalization only to struggle with life-threatening, long-term issues.

These patients don’t exist on any of the statistical models that track infection, hospitalization and death rates. 

“We don’t have any way to follow those people,” said Utah Department of Health spokesman Tom Hudachko. “We know it’s out there, we just don’t have any good way to track it.”

But they are among us.

Runners without the energy to walk around the block. Hikers who can only look at pictures of the mountains they once devoured. Hardworking, productive people who no longer have the energy for phone calls, making a meal or sweeping a floor.

“This is a very kind of cruel virus because it has so many different impacts on people,” said Dr. Dixie Harris, an Intermountain Healthcare critical care and pulmonary physician.

That cruelty has manifest itself in the lives of people like Saralee Johnston, Jess Monsen and Travis Smith.

“It’s really hindered my ability to feel normal, for the most part, week in and week out,” said Smith, who got sick from a co-worker nearly four months ago, and still struggles with breathing and heart issues.

“For all my life, I’ve been a pretty healthy individual. I’ve never really had something hanging over my head. ... It’s still difficult to handle, especially when it still acts up,” he said. “Mentally, it’s been a big challenge to overcome that.”

Monsen, the mother of three young children, was a regular at her gym before the virus derailed her life.

“It was about three weeks after the whole initial sickness,” Monsen said. “I felt like my body weighed like just heavy cement. ... It was just a beyond tired feeling.”

Some days she was so tired that she couldn’t get out of bed to get a drink of water. Then the tachycardia (racing heart) started about the same time she started feeling depressed and anxious.

“I have days where it’s really good,” Monsen said. “I feel almost normal, and I think COVID is behind me and I can move on. And then I like pay for it. ... I pay for it from being too productive. And I’m back in bed, or I have to take a lot of sleeping medication, anti-anxiety, medication, anything to just get through the day and the night. So it’s been it’s been a whirlwind. ... It’s absolutely changed me as a person. I don’t know if I’ll ever be the same person again.”

She worries the impact her chronic health problems will change who her children will be.

“They don’t get it,” she said, choking back emotion. “And they’re scared when mom is going to pass out or feeling dizzy or can’t stand up. ... There’s just this fear of not being able to wake up. And that’s, I think, my biggest anxiety, is that one of them is going to find me. And it’s, it’s just going to be really hard on them.”

Saralee Johnston’s life has been profoundly altered. Like some of the others, the 36-year-old deals with shortness of breath, severe fatigue, racing heart, but she also has periodic blindness in her right eye.

“I was healthy,” she said. “I was kickboxing. I was doing yoga. I was chasing my kids around. We were hiking. ... I had this, you know, normal life. ... I would say that the chest pain, like thinking that you’re having a heart attack, was super scary. And then the blindness stuff and trying to figure that out has been really scary. Thinking, ‘What if I permanently lose my vision in this eye? What if I’m having a stroke? What if, you know, this keeps getting worse?’”

And then there is 71-year-old Camile Biexie, who enjoyed great health until COVID-19 struck her family this summer.

Nothing is the same.

“Honestly,” she said looking down, “I feel like there are a lot of days where I feel like my great accomplishment for that day is that I managed to not die.”

In Utah a COVID-19 patient is considered “recovered” three weeks after the onset of symptoms or diagnosis. Hudachko said other places use two weeks as a recovered guideline, but at the beginning of Utah’s outbreak in March, officials went with three weeks because of the way the virus behaved in the most critical cases. 

At the start of the outbreak, if a person became sick enough to seek treatment at a hospital, it happened, on average, after about 7.5 days of symptoms. The average hospital stay back then was between five and 10 days.

“So we felt two weeks was too early,” he said, noting he’s not sure if those averages are the same today. But there is not a standard time frame to consider someone recovered from COVID-19. 

But ask Jarman if she feels like she’s recovered simply because she did not die, and she almost laughs.

“Those numbers are so misleading,” Jarman said. “They’re based on an assumption that most people are sick for about two weeks, and then they get better. But there is a whole (segment) of the population that got sick, and they’re still sick months after their first illness. ... I am four months into this. I’m not recovered.”

The reality is, no one knows for sure how many people have long-term or chronic health conditions caused by the novel coronavirus. Most medical professionals and public health officials estimate that between 10% and 25% of those who survive COVID-19 will have long-term symptoms and health issues. There are studies examining these patients, but according to one Utah doctor, it may take a year to have real clarity about the number of people who are suffering long-term and maybe permanent health issues related to COVID-19.

“We don’t have a way to treat (long-term symptoms),” said Harris. “A lot of it is supportive care. We evaluate for other issues and treat those. ... But they’re kind of all over the board as far as symptoms.”

Harris works in an outpatient pulmonary clinic, and she said she is seeing two to four new cases of COVID-19 patients struggling with significant symptoms months after they thought they’d recovered.

“I’m generally seeing patients who have ongoing shortness of breath, people who need oxygen after two months,” she said. “The variety of symptoms is unending — fatigue, shortness of breath, coughing, blood clots, tachycardia. ... The fatigue is really terrible.”

She said no one knows the impact this will have on our health care system — or even our society as a whole as many struggle to go back to work, even with accommodations.

“The one thing that is very worrisome to me is the number who have memory issues,” Harris said. “And that’s most of them. These patients did not have memory problems before.”

Lisa Knapp is one of those who has struggled with what most are calling “brain fog.” It’s one of the most common and most debilitating symptoms. She was at a drive-thru with her daughter in Rexburg, Idaho, when she couldn’t remember how to order what they’d decided they wanted to eat.

“It just wasn’t coming to my brain,” she said. Since being diagnosed with COVID-19, she he has also lost her hair, has intermittent back and foot pain, and can no longer enjoy her daily hikes.

“So brain fog comes and goes. It’s more severe some days than others, but it’s usually every day,” Knapp said.

Right now doctors are focused on helping the patients who seek help, studying trends and sharing information with colleagues.

“We don’t really know,” Harris said of what the long-term health implications could be. “We’re just starting to learn about it.”

So these COVID long-haulers live a sort of shadow existence.

They’re invisible on the charts that public health officials share with the public to warn them of outbreaks. They’re misunderstood by many in the medical profession, and the new physical and mental limitations have forced others to quit or change jobs and professions in which they once excelled.

They wake up in the ruins of favorite hobbies, hikes they once devoured, bikes they can no longer ride and goals they’ve had to abandon.

When Lisa O’Brien got sick in March, she felt like she’d escape with a fairly mild case. But her breathing issues persisted.

“I felt like I couldn’t breathe,” she said. “I’d go out and walk around the block, and I’m really slow, and then I would feel like I couldn’t breathe. And six weeks in, just talking on the phone for 20 minutes left me breathless.”

Vertigo, headaches and nausea persist for O’Brien, and like many, she’s seen multiple doctors, some of whom don’t recognize post-COVID-19 issues.

“Even on my good days, I have to take it easy,” she said, noting she’s been through truly terrifying times in her nine months of recovery. “Month three and four, I don’t know how I survived. I had to use a shower chair to shower, just because my heart rate (would race). I had the conversations with my mom and my kids about what to do if I didn’t survive, because I didn’t think I would; my body’s doing all these crazy things.

“And every time I would go to the ER, they would tell me, ‘Well, this could be COVID, but we just don’t know.”

O’Brien felt so isolated, she started a Facebook group for long-haulers where patients can share stories, resources and solutions. Many said just the confirmation from doctors and other patients has been a vital source of support.

The country’s rising case counts are not an abstract frustration for those COVID-19 survivors who struggle with long-term symptoms. They know the real danger facing not just those who think the virus is “just like a cold or the flu,” but they also know the problems created by those who don’t trust the public health precautions.

“Probably the most painful part of this whole situation is how many people diminish the seriousness of it,” said Camile Biexie, “how many people deny that it’s actually as serious as it is, how many people want to politicize it. It’s sad. It’s really sad.”

Knapp said symptoms like headaches, gastrointestinal issues and hair loss are issues that some people didn’t see as serious, but they each create their own mental and emotional challenges.

“I have always had brown curly hair,” Knapp said, “and so I actually feel this sense of loss of identity because it isn’t curly anymore. It’s very, very thin, and just dry and damaged and straight.”

Smith said those who just look at coronavirus death rates are missing a much more likely reality for those who are infected with COVID-19.

“It’s hard because you feel like your story isn’t being heard. A lot of people are so focused and zeroed in on that desk statistic, or the case count,” he said. “And that we really, as a public, don’t understand what people (are actually) dealing with. And I, admittedly, was the same way before I got it.”

Some of those now dealing with long-term symptoms or complications understand the reluctance of those who don’t see COVID-19 as a serious public health threat.

“In the beginning, I didn’t think it was that bad,” said Marci Forney, who has been sick for nine months with symptoms including hair loss, gastrointestinal issues, cognitive issues, brain fog and fatigue. “I thought the media was trying to blow it out of proportion.”

Stacie Linderman was also one of those who once doubted the seriousness of the virus. Now she’s among those who survived weeks on a ventilator only to deal with months of post-COVID-19 symptoms, including hair loss and breathing problems.

“I hear everyday, ‘It’s a hoax. It’s the flu,’” Linderman said. “And it’s not. This is real.”

Adds JoLynne Nay, “It’s not what you think it is. You hear all these people in the media and the experts, but who you should listen to are the people who are going through it.”

Jarman doesn’t understand the resistance to wearing masks, especially as scientific evidence mounts about their effectiveness in reducing the spread of the virus.

“It’s the simplest thing to wear a mask,” she said. “We can do it. We just have to decide that we care about our community instead of our freedom to not wear a mask. This is not a hoax. It’s not a joke. It’s not a political thing. Trust me, I would have been so thrilled on Nov. 4, if I had woken up feeling great because this was a hoax.”

Monsen emphasizes that they’re not sharing their experiences to scare anyone.

“It’s not a fear-based thing,” she said. “Knowledge is power. You don’t want this.”

Johnston said focusing on the death rate misses much of the dangers.

“Yeah, you might live through it, but it doesn’t mean you get to keep your life,” Johnston said.

Smith emphasizes that in order to protect those most vulnerable, to reduce the number of people suffering from long-term issues like him, and to get back to some semblance of normal life, everyone has to be willing to do what public health officials advise.

“We need everyone’s effort in order to to combat this and fight it and control it,” he said. “Until eventually we can find what it’s going to take to to cure it and overcome it.”

Adds Jarman, “I just wish people would stop and just think for a minute of what they could do for other people.”