COVID-19 survival isn’t return to normal
These three Wisconsinites face struggles to breathe, think clearly months later
A month after getting COVID-19, the two-mile walks that Raylene Jones used to go on with her dogs are still out of the question.
Before the illness she had mild asthma that acted up in the winter; now, she needs her emergency inhaler three or four times a day. She can’t return to her work in the finance industry — the stock market stressed her out on the best days, she said, before she was battling the mental fog that came with the virus.
Since she was infected, the 31-yearold Milwaukee woman’s life has changed completely. Jones had surgery last year to remove thyroid cancer, and she said that recovery moved faster than this one.
She continues to have a persistent cough, body aches and an occasional lack of appetite, and has also begun to see a therapist to treat the posttraumatic stress disorder that doctors say accompanied her illness.
Jones, who spent 16 days in the hospital with complications from COVID-19, is not alone in experiencing symptoms that linger beyond the two weeks that scientists thought, in the early days of the pandemic, would be the recovery time for the virus.
The Wisconsin Department of Health Services classifies a person as “recovered” once symptoms have cleared or 30 days have passed since the onset, and eight of 10 of the state’s cases meet that definition. But that label doesn’t always reflect a return to normal.
As the U.S. passes its sixth month dealing with the coronavirus pandemic, there’s a growing recognition that the effects of the virus can be persistent for some people, and that it can lay dormant for months, then flare up again. Doctors and researchers are pushing to better understand the disease’s effects on survivors.
Prolonged symptoms are more common in patients who were hospitalized with a severe version of the disease, but a Centers for Disease Control and Prevention survey of COVID-19 patients found that more than a third who didn’t require hospital care still had not returned to normal health two to three weeks after their positive test.
Of those surveyed, one in five people ages 18-34 who had no underlying medical conditions had not returned to their usual health, the report said.
In a July 9 study from the Journal of the American Medical Association, less than 13% of people who had been hospitalized with COVID-19 were symptomfree after 60 days. More than half of the patients surveyed still had three or more symptoms.
It’s one of many uncertainties facing doctors, patients and their loved ones as the COVID-19 pandemic plays out: If you survive an infection, what does “recovery” really mean?
Doctors confront the unknown as they treat recovered patients
Bart Miller, a physician assistant at Bellin Health’s Clinica Hispana in Green Bay, worked with patients who were infected during the city’s outbreaks at its major meatpacking plants in the spring.
Of the more than 150 people he has treated for the virus, most had a smooth recovery, Miller said. But some are experiencing lingering fatigue, loss of smell, chest pain or an increased tendency toward blood clotting, as well as anxiety and depression.
“This is an illness that our bodies haven’t seen before,” Miller said. “A lot of my patients, it takes them quite a while to get their strength back.”
The long-lasting effects of the virus surprised the medical field, said Dr. Zijian Chen, medical director for the nation’s first post-COVID care center at Mount Sinai Health System in New York.
The center, which opened about two months ago, has treated 300 patients so far and is booked out to October, Chen said. People’s symptoms vary by type and severity — trouble breathing, weakness, headaches and mental fog, to name a few.
“We as a (medical) community did not think enough about the effects that may happen with these patients,” Chen said. “We’re missing that one piece, the gray between the black and white, which is what happens when these patients survive and don’t die.”
It’s hard for doctors to admit to patients that they don’t know everything, he said, but the goal of the center is to build on what is already known. By observing recovery in a large number of people, the center is building knowledge that can help other health systems learn how to treat their COVID-19 patients.
Recovery is especially tough on patients who had long ICU stays, like Leah Blomberg, 35, from Muskego.
Blomberg fell ill in late February and her symptoms worsened through March, when she was hospitalized and placed on a ventilator — mechanical breathing assistance used for the sickest COVID-19 patients — for nine days.
She was discharged from the hospital April 10, but nearly four months later, she still gets winded carrying groceries from her front door to her kitchen. She was bedridden for a week after she tried to clean her bathroom. After doing the toilet and the sink, she said, it felt like she’d run a marathon.
The ventilator also rubbed on her vocal cords, making her voice raspy.
“I kind of think it’s just going to be like this now,” Blomberg said.
Lifelong effects? Reinfection? What comes next?
Uncertainty about the future can be frightening even for those with mild cases.
Buffy Riley, a nurse from Hayward who got sick April 19 after working in a makeshift ICU in New York City during the worst of the city’s outbreak, said she often thinks of her own spin on a line from from Harper Lee’s “To Kill a Mockingbird”: One does not love breathing, until they fear they’ll lose it.
Riley, 62, isolated in a remote cabin in northern Wisconsin after she tested positive and only spent one night in a hospital. But before the illness, she could walk seven or nine miles in a day, and did so often. Now, it’s a struggle to walk one mile.
“I don’t know when and if I’m ever going to get these things back, and that’s very alarming to me,” Riley said.
Beyond shortness of breath, something else is making Riley nervous: the possibility that she could get sick again.
Her last nasal swab, taken in June, came back positive for the virus, even though she felt far better than she had in months. Now back at work, a nurse at her hospital recently tested positive and everyone on staff was offered a test, but she said she’s afraid to take one for fear she’ll again test positive.
Experts believe it’s very unlikely that a person can be reinfected with COVID-19 so soon. What’s more likely, said Miller of Bellin, is that the diagnostic test locates a few lingering particles of the original infection, even if the person no longer feels sick.
In some instances, the virus could lay dormant for a few months before flaring up again and triggering another bout of illness. That might make the person think they’ve been reinfected.
Kristin Walloch believes that’s what happened to her, although the 49-yearold Milwaukee resident wasn’t able to be tested in February, when she was hit with an unusual flu-like illness, coupled with a burning sensation in her upper chest.
Walloch, who at the time worked at a hotel where international visitors came and went, said she never felt fully recovered from that illness when she began to get a scratchy throat on June 14. About a week later, she got a positive COVID-19 test result and was sidelined from work with the same symptoms she experienced in February.
“I’m worried that COVID eats at you bit by bit until it finally gets you,” she said.
At UW Health in Madison, medical director of infection control Dr. Nasia Safdar said the hospital has seen several patients come back with respiratory symptoms and a new positive COVID test. A few explanations are possible, she said: They have a different respiratory condition, they’re still experiencing symptoms but are no longer infectious, or they’ve been reinfected.
“It’s virtually impossible to tease these out without actually culturing the virus to see if it’s still alive and replicating,” Safdar said. “Our overall feeling when we review these patients is it’s likely not a reinfection, but we can’t say that for sure.”
Moving forward, one day at a time
Recovered patients have been finding solace in Facebook groups for those who have survived the virus, where they can share symptoms, air frustrations and celebrate a negative test result.
Monica Duell-Smith, 43, from Mosinee, joined a group when she experienced the return of some of her symptoms a few weeks ago — chills, nausea, a general “out of it” feeling and certain foods tasting bad. She first got sick March 21 with aches, a low-grade fever, a loss of taste and smell and other neurological symptoms. A blood test found the presence of COVID-19 antibodies in her system about a month ago.
Duell-Smith said she wants people to know COVID-19 isn’t a death sentence, but her anxiety has increased since her illness.
“If you know someone (who has it), check in on them, even if they did recover,” she said. “It’s a little scary to have something that’s part of a huge pandemic.”
Both Chen and Miller underscored the impact of the disease on their patients’ mental health. Patients should tell their primary care providers about those issues right away, Chen said.
“You’re looking at some very young patients with no medical problems in the past, they come down with COVID because of exposure and now they have symptoms they can’t, for some reason, get rid of,” Chen said. “They’re debilitated and can’t get back to where they were.”
Jones, in Milwaukee, is working with her therapist to stave off paranoia over being close to others.
She’s terrified she could become sick again, and wind up on a ventilator this time.
“You feel like you no longer have control and your body’s turned against you,” Jones said. “I would not wish this on my worst enemy.”
Riley said she tells people she’s recovered, but she doesn’t believe she truly is. “Let me tell you what not breathing is like,” she tells those around her who don’t want to wear masks. For six weeks as she battled the illness, each breath hurt. Walloch said she recommends people that haven’t had the virus yet protect their lifestyle, because no one knows how bad the illness could be once it sets in.
Miller subscribes to that same logic. “This is not something you have to get,” he said. “If you’re not exposed to it, if you can stay safe, then we don’t ever have to find out what your recovery would be like.”