These COVID-19 patients survived. But they never recovered

Are you on the front lines of the coronavirus? Help us report on the pandemic.

Certain units of measurement have become familiar standards in the new language of this pandemic: 6 feet of distance, 20 seconds of hand washing, 2 weeks of quarantine.

That last one has, until recently, been largely understood to be the amount of time it takes someone with COVID-19 to stop being contagious, and also to start feeling better.

But the longer we live with the novel coronavirus and the farther out we get from the start of its spread, the more patients there are with symptoms that persist for weeks or even months beyond the 14-day mark.

Melissa Mazur’s first two weeks feeling ill were in the middle of March, the same time Philadelphia and the surrounding region was shutting down. Her symptoms were typical, but mild: sore throat, tight chest, fever, extreme fatigue. Tests were scarce, and she knew that as an active, otherwise healthy 39-year-old, she wouldn’t qualify for one. So she did as instructed: She stayed home, drank tea, and rested up. Gradually, she started to feel better.

And then, at the beginning of Week 3, she started having trouble breathing.

“I was just sitting on my couch, and all of a sudden it felt as if I had just run a 5k and couldn’t catch my breath,” said Mazur, who has run marathons in the past. Before she fell ill, Mazur exercised most days. It wasn’t uncommon for her to walk home from her Center City law firm, pick up a couple of bags of groceries, and carry them the rest of the way to her house in South Philadelphia. Now, she couldn’t make it up her stairs without running out of breath.

The next symptom was a throbbing pain in her neck. It was mid-April now, four weeks since the onset of Mazur’s symptoms, and the New York Times released a report that found that the coronavirus was causing strokes in some young people. She was terrified she might have a blood clot, so she scheduled a televisit with her general practitioner.

“She told me that I probably didn’t have COVID, because you can’t have it for more than two weeks,” Mazur said. “I thought that was really strange, given that we didn’t know anything about it, especially then.”

Afraid she would end up in a hospital where a doctor would have no way of knowing her medical history (she’s never been hospitalized), Mazur, who lives alone, started keeping a daily log of her symptoms. They ranged from a racing heart beat to gastrointestinal issues and what’s come to be known as “brain fog.”

At the six-week mark, Mazur’s friends started to question if her symptoms might be all in her head. She’d never gotten tested, so they wondered if she might just be feeling anxious about the state of the world, and suggested she go out for a walk, get some fresh air. But, Mazur said, she knows her body, and what’s more, she knows her personality.

“That’s just not who I am, it’s not how I handle things,” said Mazur, who attended law school at night in her late 20s while working full time. “If anything, stress and trauma I deal with after the effect of the event. I’m like the doer, I’m ready to figure out what we can do — how can we make it better?”

Met with skepticism

Though there’s still a lot doctors and researchers don’t understand about the novel coronavirus, there are enough patients like Mazur to detect a pattern. The Centers for Disease Control and Prevention released a report in late July that found a third of patients surveyed two to three weeks after a positive COVID-19 test had enduring symptoms. Among young people ages 18 to 34 with no chronic medical conditions, nearly 1 in 5 reported that they had not returned to their usual state of health 14 to 21 days after testing. For comparison, 90% of outpatients with the flu recover within approximately two weeks of a positive test result.

An Italian study of patients who had been severely ill surveyed people two months after their initial diagnoses. It found only 13% were completely free of any COVID-19-related symptoms.

Despite the clear trend, there is no known treatment for the persisting illness, which has caused thousands of people across the globe to take to Facebook groups, subreddits and Slack channels for COVID “long-haulers.” There, they commiserate over common symptoms, share emerging research, and find companionship.

It was five weeks after she’d tested positive for COVID-19 that Elizabeth got so dizzy cleaning her bathroom that she went to the emergency room.

A teacher at a Philadelphia charter school, WHYY agreed to withhold her last name to protect her privacy.

At the emergency room, doctors were about to send her home with a recommendation to continue resting when her chest X-ray came back: She had ground-glass opacity in her lungs, a sign of pneumonia.

The doctor prescribed an inhaler and a prescription for antibiotics to treat the bacterial pneumonia.

“They said, `You’re gonna get through this, and you’re gonna be fine,’” said Elizabeth, who is 40 and has a 3-year-old and a 6-year-old. “But I didn’t feel fine.”

She turned to a Facebook group she had joined where someone had posted a treatment protocol out of Eastern Virginia Medical School that suggested a lot of over-the-counter medications and supplements. She wrote a note to her doctor asking if any of them would interact badly with the drugs she was already taking. She said he gave the OK for a couple of supplements, like vitamin C and melatonin, but didn’t address her concern about potential interactions.

“I was so turned off by the fact that my physician blew me off,” she said. “I just thought that was a very reasonable question to ask.”

‘Tell them you believe them’

To fill the void left by general practitioners like Elizabeth’s and Mazur’s, specialized practices have started cropping up. At the University of Pennsylvania Health System, a five-practitioner respiratory clinic for post-COVID recovery opened its doors in late June. It’s seen about 40 to 50 patients since then, most of them middle-aged and many of them in otherwise good health.

While the constellation of symptoms varies, shortness of breath, persistent cough and extreme fatigue top the list. Many patients have dramatically abnormal CT scans or chest X-rays weeks or months after their diagnoses. Many have been turned away or referred by their primary care doctors, who may not feel prepared to offer advice on long-lasting COVID-19 symptoms.

“The very first step is just to listen to the patient and tell them you believe them,” said Jessica Dine, a pulmonologist with the clinic and director of Penn’s Advanced Consultative Pulmonary Group. She added that while she sees the same number of male patients as female, anecdotally men are more likely than women to have been offered some form of therapy in the past.

“I do think there’s a gender bias there — women, in particular, are feeling that they’re not being taken seriously when they’re presenting with persistent symptoms,” Dine said. Treatment disparities resulting from gender bias in medicine are well documented.

Research supports that just having been critically ill, especially for a long period, can have long-term health effects. Acute respiratory diseases can cause irreversible damage to the lungs like scarring, and being hospitalized can cause ongoing weakness that can require weeks of rehabilitation. People may need speech or physical therapy simply to regain peripheral muscle strength lost while they were resting.

Some of the people coming into the Penn clinic, or participating in Facebook groups, might be dealing with those aftereffects, said clinic director Robert Kotloff. Others may simply be experiencing pandemic-related anxiety, or their bodies could be reacting to another COVID-19 treatment. For instance, extreme fatigue could be the result of an over-the-counter antihistamine taken to reduce inflammation.

Symptoms resulting from those peripheral causes may be severe and still require care. But it’s the patients whose COVID-19 cases were mild enough that they never required hospitalization, and whose symptoms have lasted months without ever entirely subsiding, that remain mysterious.

Kotloff said they don’t know enough yet about the natural course of the virus to try to treat the symptoms in those cases. It might turn out to make good sense to prescribe a steroid like prednisone (which can be known to have adverse side effects) to accelerate recovery, but it might be unnecessary, he said. So instead, they just monitor.

“In most cases, it’s watchful waiting and not intervention,” said Kotloff.

He said he recommends that patients keep an “oxygen diary” to give them a sense of whether their lung function is improving. He suggests low-intensity exercise because deconditioned muscles can cause shortness of breath.

But doctors can’t make any guarantees that these symptoms will ever subside. Dine said that some of her patients have recovered to the point where their symptoms are just a nuisance and don’t interfere with their ability to work or their quality of life. But not one is back to the place they started before they were sick.

“Now that we’re hitting the six-month mark, I’m scared that we’re going to see a subset of people that are going to have chronic symptoms,” Dine said. “Lifelong symptoms.”

Losing track of the timeline

Eventually, both Melissa Mazur and Elizabeth found doctors who took their concerns seriously. Elizabeth reached out to a doctor who had treated her for allergies 20 years ago, who is running a battery of tests on her vascular function and has prescribed prednisone in the meantime. Mazur’s doctors are taking the watchful-waiting approach, following up every couple of weeks.

Still, neither can work. Around Week 17, Mazur thought she had finally recovered. She went on a successful walk to FDR Park, not far from her house. But then one day, she woke up with swollen lymph nodes, a rash, a fever, and chills. A bout of insomnia was the last straw:

She called work and asked for a two-week leave to be able to rest completely.

This time of year, Elizabeth is usually excitedly planning lessons and preparing for a return to the classroom. She knows this year is different for everyone, but she just can’t seem to find the motivation to execute on her ideas.

“They sort of, like, bubble and boil in my mind, and then they just turn into steam,” she said.

“It’s not just like being a little tired has ever put me off before, I’ve been doing this for 15 years.”

Elizabeth’s charter school is planning on a hybrid learning model, which would require her to teach in person. Her doctor has recommended that she not start the school year in the building, so she’s exploring options to go on disability with her HR department.

For many COVID long haulers, the notches in the pandemic timeline are not so neatly spaced.

The CDC has said people are no longer contagious two weeks after diagnosis, but some doctors aren’t so sure of that. Immunity, if it exists, might last three months, but many with consistent symptoms have already passed that mark.

And so for Mazur, it’s started to make more sense to pare down all the numbers.

“I’m a multitasker,” she said. “And I just can’t do that. I have to focus on one thing at a time.”

One household chore per day. One breathing exercise, lying on the floor. And just one goal: to rest.