WAYNESFIELD — Wendy Winegardner was always a sickly child.
She suffered from frequent bouts of respiratory ailments like bronchitis and strep throat. She recalls having tubes inserted into her eardrums twice to help ear infections. She had her tonsils removed.
But it wasn’t until 2012 that Winegardner, now 48, was diagnosed with common variable immune-deficiency (CVID), a rare condition inherited at birth that makes it harder for her body to build antibodies to fight off infection.
Because CVID mimics respiratory illnesses, it often goes undetected for 30-40 years. Winegardner was about 40 years old when she learned her diagnosis.
She worries that COVID-19 could kill her.
There’s no cure for CVID. Patients can take plasma infusions to increase their antibodies, a treatment Winegardner started after she was diagnosed in 2012. But the treatments were costly, she said, averaging about $5,000 per month, so she stopped the infusions for a few years until her doctor recommended that she see an immunologist and resume treatment this spring.
Winegardner, a hospice nurse for Mercy Health-St. Rita’s Medical Center in Lima, took time off work at her doctor’s urging as the novel coronavirus spread in Ohio in late March. The decision was precautionary.
But because Winegardner is a hospice nurse, she was classified as an essential employee and did not qualify for furlough. She couldn’t collect unemployment. And she didn’t qualify for short-term disability either because, Winegardner said, she was not acutely ill.
The bills piled up so that by late April she decided to go back to work, even though Winegardner’s doctor advised her to stay home until June 1.
She worked a 12-hour shift the day after her first plasma infusion in April. Several days later, Winegardner said, she developed a low-grade fever and was sent home from work. She was tested for COVID-19 soon after, but the results came back negative and she was allowed to return a week later.
But she was still feeling sick after another three 12-hour shifts.
“That entire week, I worked feeling like I was going to die,” she recalled. “But I’d been off for so long with no money, and I felt like I let my team down. I let them down for six weeks. Here they are fighting this battle, and what am I doing? I’m at home, as a precaution. I felt like that I not only owed it to myself to go back to work and try to make money for my family, but I owed it to my team; I owed it to my profession.”
Winegardner soon learned the cause of her pain was another rare disorder, this one autoimmune hemolytic anemia, an autoimmune disorder in which the body attacks itself by killing off its red blood cells immediately after they’re produced. In Winegardner’s case, this mimicked the symptoms of COVID-19.
She had low-grade fevers and extreme body fatigue. Her heart was racing. She couldn’t breathe.
“My body was grasping for oxygen I wasn’t getting,” she recalled.
Winegardner spent five days in the hospital while her blood levels improved. Within hours of her release, Winegardner recalls, she collapsed and was readmitted to the hospital for several more days.
She’s now recovering at home, wondering how she can return to work in the midst of a pandemic she is highly susceptible to, knowing that she cannot afford to stay home, either.
“I didn’t almost die from COVID-19. I almost died from something else,” Winegardner said. “But now I’m faced with: I’m being treated for that, so what if I’m exposed to COVID-19?”
As a hospice nurse, Winegardner cares for the terminally ill, who are less likely than typical hospital patients to pass along the respiratory illnesses her body can’t fend off. But because these patients are choosing to die at home, accompanied by friends and family who may be carrying viruses unknowingly, Winegardner may still be exposed to COVID-19.
She wears personal protective equipment, but the risks are still great for someone with a compromised immune system, especially when visiting family members don’t realize they are sick.
“Who am I to tell somebody that they can’t have their family around them,” Winegardner said. “I would never, never. But that’s kind of dangerous to me.”
A difficult choice
In early May, the Ohio Department of Job and Family Services unveiled a web portal for companies to report employees who refuse an offer to come back to work as businesses reopen.
While there was some backlash to the website, ODJFS has long asked companies to report individuals who turn down a reasonable offer for work, which in turn prompts an investigation into whether the person was justified and therefore still eligible for unemployment benefits.
Those standards still apply during the coronavirus pandemic.
Ohioans who refuse an offer to return to work must prove that a reasonable person would quit under similar circumstances. Employees who believe their workplace is unsafe can alert their local health department if conversations with management or human resources are unfruitful, for example.
Earlier this month, ODJFS Director Kimberly Hall explained that the individual’s working conditions would be considered from a health and safety standpoint, along with other issues like work history, prior training and wages.
Simply being afraid of the virus, Hall said at the time, is not a sufficient justification.
Bret Crow, a communications director for ODJFS, said the department will continue reviewing its return to work policies as the state resumes economic activity.
Still, proving a reasonable person would reject a similar offer may be difficult.
“Unless you have some sort of disability, there aren’t many protections out there for you,” said Dallan Flake, an associate professor of law at Ohio Northern University’s Pettit College of Law.
Some underlying health conditions associated with severe illness from COVID-19, Flake said, may qualify as a disability.
“In those circumstances,” he explained, “the employer has an obligation to work with the employee to see if they can figure out a way to accommodate the employee.”
But old age does not qualify as a disability, Flake said, even though age is one of the strongest indicators of risk for severe illness with COVID-19.
This is the dilemma facing older adults and individuals with underlying health issues when working from home is not an option: Is it better to continue working, despite the risks to their health? Or is it better to potentially lose a job and access to unemployment benefits to reduce exposure?
In Winegardner’s case, unemployment was not an option. And she says her employer has been accommodating, trying to find new roles for her that would pose less risk than working in hospice. In the meantime, Winegardner reapplied for short-term disability after her two-week stay in the ICU.
She still hopes to return to work once her body recovers, but Winegardner said her treatment plan and the course of the pandemic will dictate whether she continues working as a hospice nurse or pursues an alternative career, perhaps in telehealth.
“We don’t want to live our lives in fear,” she said. “However, there has to be some level of that because I don’t want to just flippantly go out among the public and end up back in the hospital. That was the scariest time of my life.”
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