CORONAVIRUS

After months of chronic symptoms, COVID long-haul patients struggle to make ends meet

'COVID has taken so much'

Darcy Havel-Sturdevant rubs her eyes while taking a break before a telemedicine appointment as her three-year-old daught
Darcy Havel-Sturdevant rubs her eyes while taking a break before a telemedicine appointment as her three-year-old daughter, Rayne, picks out books to read at their home in Iowa City on Thursday, Feb. 4, 2021. (Andy Abeyta/The Gazette)
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A growing number of COVID-19 patients continue to experience symptoms weeks or months after their initial infection with the novel coronavirus, leaving health care providers and scientists without answers on the cause.

Without a clear solution to their struggle, these patients continue to grapple with lingering effects since they were sickened with the virus. And with symptoms persisting several months, doctors nationwide are concerned they will see a significant number of Americans coping with long-term disability as a result.

Moreover, because their doctors don’t have a clear treatment for the lingering effects on their health, these post-COVID-19 “long-haul” patients are left in limbo. They take new medications, participate in medical tests and consult with specialists to try to understand what’s wrong. But still, symptoms persist.

For patients who are too ill to return to work, the doctor’s visits, prescriptions and other expenses are creating a serious financial challenge.

After nearly 10 months dealing with symptoms of her COVID-19 infection, Iowa City resident Darcy Havel-Sturdevant started a GoFundMe page in December, pleading for financial aid to help her family cope with medical bills and living expenses.

“Long story short, we need help,” the 33-year-old wrote. “COVID has taken so much from my family, and I honestly feel like I am turning into a shadow of my former self.”

“We’re doing as best as we can, but when you’re out of work for nine to 10 months, there’s obviously going to be financial hardships,” Gabe Sturdevant, Darcy’s husband, told The Gazette.

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Estimates put the total number of COVID-19 long-haul patients in the United States in the tens of thousands. Some surveys published in recent months indicate 50 percent of certain patient groups report symptoms three months after their initial illness, after tests no longer would be able to detect the virus in the body.

According to the federal Centers for Disease Control and Prevention, these symptoms include shortness of breath, fatigue and difficulty thinking and concentration, otherwise known as a “brain fog.” Other serious long-term complications that have been reported include inflammation of the heart, abnormalities in lung function and difficulty with memory.

Havel-Sturdevant began noticing coronavirus-like symptoms in March, including a high fever and shortness of breath that persisted over the weeks. She tested positive for COVID-19 on April 29.

Symptoms of the virus didn’t go away after 14 days, or even after 140 days, lingering months after she was officially considered as “recovered” from COVID-19 under official state and federal guidelines.

She continued to have shortness of breath, fatigue and increased blood pressure. In recent days, her symptoms also have manifested as severe migraines.

Early on in her illness, she also developed a “brain fog” that diminished her cognitive ability. Havel-Sturdevant said to this day, she still struggles with lapses in her memory.

“It’s been tough,” Gabe Sturdevant said. “You have to pay attention to everything all the time because she’ll forget that she was cooking and walk away or forget that she turned the garbage disposal on or forget that she let the dogs outside.”

Sturdevant is a freelance photographer and was the family’s primary earner before the pandemic. COVID-19 shut down weddings and other events he typically would photograph, resulting in the loss of about $35,000 in 2020 alone, he said.

“If someone did have a wedding, it would be a quarter of what they planned. What was usually $3,000 is now a $500 for a couple hours,” Sturdevant said. “Even if the jobs were there, the money’s not the same.”

In September through November, Sturdevant estimated they were going to three or four doctor’s appointments a week. Havel-Sturdevant’s also tried several different medications during the past few months to see if any could offer relief.

Havel-Sturdevant, who worked part time at the University of Iowa Hospitals and Clinics, said the couple scrambled after she took a leave of absence to keep her employer-based health insurance to help cover visits with neurologists and other specialists, terrified of a lapse in coverage as thousands of dollars in medical bills trickled in.

The couple found relief this past month when Havel-Sturdevant, who has been out of work since March, was awarded long-term disability.

“I’ve worked since 18, and I’ve always worked full time,” she said. “I’ve always paid my bills. It’s very scary to think that I won’t be able to.”

‘One thing on top of another’

Compounding cognitive issues can add an additional burden to managing medical bills, said Kim Diamond, a Cedar Rapids resident who has been experiencing COVID-19 symptoms since mid-March.

“One of most difficult things about this experience is navigating all the different doctors and medications while you’re so sick,” she said.

Diamond recounted an instance from a few months ago when she received a past-due notice for a several-thousand-dollar hospital bill that she had sworn she had been paying. Instead, she had been paying a bill from another provider and had lost track of her other debts.

The past year has posed a major financial challenge for Diamond, who said she used all her savings to pay for medical bills and derecho-related expenses. She said she had used the $600 federal stimulus check to pay for groceries, which she wouldn’t have been able to afford otherwise.

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And she continues to struggle with her health. Diamond said she recently experienced fainting-like episode and was admitted to the hospital. She still has bouts of weakness and has to use a walker around her home.

“It’s been one thing on top of another,” she said.

The emotional aspect of having a chronic illness is “very draining,” Havel-Sturdevant said. She said she struggles with the fact that she’s not always able to be an active parent to their three-year-old daughter and often feels guilty that her husband has had to become the family’s primary caregiver.

“It’s hard to say you don’t feel like a failed parent when comes to chronic illness,” she said. “I have all of these high expectations for myself, but I have to step back and tell myself I might not accomplish everything I want to accomplish. I have to be happy with what I can do.

“It’s taken a long time to accept that throughout this process.”

Havel-Sturdevant said she hopes to be able to return to work once she recovers. Though doctors and other scientists studying this issue have no clear indication whether any long-haul COVID-19 patient will be able to fully recover, she’s determined to keep trying.

“I still plan to keep going to medical appointments,” she said. “It makes sense to try to figure out what’s going on with my brain and body .

“There’s got to be an answer somewhere, or something that will make it better.”

Comments: (319) 398-8469; michaela.ramm@thegazette.com

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