‘I’d never felt like that,’ said Elizabeth Edwards, describing her coronavirus symptoms. It was so intense it felt like drowning, the 38-year-old said. MADDIE MCGARVEY FOR THE WALL STREET JOURNAL
Survivors of Coronavirus Face an Uncertain Road Back to Normal
| le 7 April 2020
Guidelines vary widely for when recovered Covid-19 patients can safely return to their pre-coronavirus lives
After Rachel Wall described her coughing spells, extreme fatigue and fevers, her doctors told her to self-quarantine in her Denver home for 10 days and until she was fever-free for 72 hours. In Cincinnati, Elizabeth Edwards was advised to stay home for 14 days and until she was symptom-free for three days.
In the Netherlands, Kevin Toms also got the 14-day directive. And in Australia, Amy McKenzie’s home isolation could last even longer: She needs two consecutive negative tests to show she isn’t shedding virus anymore—and she’ll only be eligible to get tested after her symptoms are gone.
Because data on Covid-19 progression is scant and knowledge about the virus that causes it is swiftly changing, guidelines about when patients in recovery can safely resume some aspects of their pre-coronavirus lives vary greatly around the globe, and even within countries.
Adding to the uncertainty, some guidelines differ depending on the severity and type of case. Authorities in Australia have three sets of guidelines: for people who have mild cases and recover completely at home, for people who have been hospitalized, and for health-care workers.
The variation is sowing confusion about what patients should do and when they can be considered well. It all adds to their anxiety, they say.
“We’re in uncharted territory. We really don’t know. That’s the problem,” said John Gumina, chairman of family medicine at Jersey Shore University Medical Center in New Jersey, the second-hardest-hit state in the U.S. after New York. He recommends a 14-day quarantine, but sometimes “even at that point, the patients are feeling pretty funky,” he added.
Ms. Wall’s 10-day quarantine ended April 5, but the 32-year-old baker, a former laboratory scientist, said she is battling a cough that makes it difficult to talk. Drinking lots of fluids and cough medicine has helped, she said, but her heart races whenever she stands up. She plans to stay put.
“It’s just frustrating to not be able to have the testing and the knowledge we need to adequately combat this,” she said.
Ms. Edwards, a 38-year-old venture capitalist, was in her office on March 12 when she started feeling like she couldn’t breathe. She called her doctor, who told her she likely had Covid-19 and that she should self-quarantine.
“I’d never felt like that,” she said—not while running half-marathons or during three days of labor before the birth of one of her daughters.
She stayed home, but continued working. Six days later, she went to the emergency room after her shortness of breath worsened. It was so intense it felt like drowning, she said
The ER physician concurred with the Covid-19 diagnosis and advised self-isolation, plus rest and hydration. She followed that advice more closely this time, taking vitamins and drinking fresh juices and water. A pulse oximeter, a wearable device that measures oxygen saturation in the blood, helped her manage her stress when she felt she couldn’t breathe. As long as the number stayed above 95, she knew her body was OK. (When it starts to dip into the low 90s and 80s, it is time to head to the hospital, Dr. Gumina said.)
Her symptoms evolved: She started coughing up phlegm, the fevers let up, and slowly her energy and ability to breathe normally returned.
March 26, the day her 14-day isolation ended, “was the first morning where I felt like I could take a deep breath,” Ms. Edwards said. She didn’t feel like she’d be “running a mile or even a couple of blocks, but I do feel like I could do some yoga,” she said.
There was some confusion about what her release date should be. She said her doctor had told her that her 14-day clock started on March 11. She didn’t understand the rationale and decided that it would start on March 12, the day she had first felt shortness of breath.
Even physicians say it can be difficult to know for certain when the quarantine countdown should begin. “This is really hard because I’m not sure anyone knows,” said Alicia Fernandez, a professor of medicine at the University of California, San Francisco, and a primary-care doctor at Zuckerberg San Francisco General Hospital.
Part of the problem is that scientists don’t yet fully understand when patients begin to be infectious, or when they cease to be.
Many of the guidelines focus on symptoms, but some patients have symptoms so mild they may be imperceptible. And as many as 25% of infected people in the U.S. may be asymptomatic, Centers for Disease Control and Prevention director Robert Redfield recently said. Whether they are infectious is unknown, experts said. Asymptomatic patients can test positive for the virus almost a month after the initial exposure, some case reports from China and the U.S. suggest.
CDC guidelines say Covid-19 patients can discontinue home isolation if they meet these three criteria: They have been fever-free for at least 72 hours without taking fever-reducing drugs, respiratory symptoms like cough and shortness of breath have improved, and at least seven days have passed since symptoms first appeared. The agency stresses “the decision to stop home isolation should be made in consultation with your health-care provider and state and local health departments. Local decisions depend on local circumstances.”
“The best answer to this question today might change on a day-to-day basis,” said Aditya Shah, an infectious-disease physician at the Mayo Clinic in Rochester, Minn.
When Ms. McKenzie, a 30-year-old mother of three in Australia, tested positive for the virus, she said local health authorities initially told her to prepare to self-isolate for 14 days. But Ms. McKenzie, a mental-health coordinator at a health-care provider, soon realized her isolation could last even longer.
Ms. McKenzie said because of her job there are more stringent requirements for when she can cease home isolation. After her symptoms are gone, she will have to return two negative tests for the coronavirus, taken 24 hours apart, before she can be released. Consecutive negative results is the gold standard, U.S. doctors also say, but the scarcity of tests means it can’t be implemented widely.
“People are thinking it’s just 14 days. It’s not,” Ms. McKenzie said. “You could be in isolation for a long time. And you’re also waiting on how long it takes for these test results to come back.”
Meanwhile, Ms. McKenzie is isolating at home with her boyfriend in Newcastle, a more than two-hour drive north of Sydney, and her children are staying with other family. She is unsure when she’ll be able to see them again.
More than a week after her positive test result, Ms. McKenzie said she felt her symptoms, such as difficulty breathing, were improving. Daily chores can still be a challenge. She recently took a hot shower, but had trouble breathing because the steam irritated her lungs. She felt better after using an inhaler.
“That was a bit of a freakout,” she said. “I got upset because I thought, ‘This is never going to get better.’”
In the Netherlands, Mr. Toms, a 62-year-old software developer, also felt perplexed about when he could end his quarantine.
“It’s clear that if you get symptoms, you’ve got to isolate yourself and wait 14 days,” he said. “But if you’ve got it, how long do you wait? That’s not quite consistent. It would be helpful if it was.”
On March 11, Mr. Toms felt hot flashes while watching television. By the next day, he’d developed a dry cough. The following day, he felt like his lungs were getting smaller, he said.
Over a telemedicine consultation, his doctor told him he probably had Covid-19 and he should stay home for 14 days.
Over the course of three days, the tension in his chest worsened. He took fever-reducers and rested. By the fourth day, his symptoms seemed to have stabilized, but it took another six days to “feel normal again…and it got steadily better after that,” he said.
He kept his quarantine two days past the 14-day period to be safe. Now, he has resumed riding his bike. He added, “My energy levels are definitely lower at the moment.”