Kels Rosario tested positive for COVID-19 before there was a vaccine and again after he got the shots. He suspects an illness at the beginning of the pandemic also was caused by the coronavirus.
One bout was enough to send him to the hospital four times and turn his mild asthma into a persistent lung issue requiring him to breathe in medication morning and night through a portable inhaler. He also has such “puffers” at the ready around his home and car and at friends’ houses.
“They’re stashed everywhere because I feared I wouldn’t get to one in time,” he said. “With the weather a little colder, I use them a little more frequently during the week.”
Nonetheless, Rosario, 32, has adapted, working full-time and enjoying time with friends.
It’s what an increasing number of people must do to manage a “post-COVID condition,” or long-haul COVID, as it’s become known. In the nearly two years since the pandemic began, there isn’t one treatment or even any specific diagnosis for the many people with persistent or new symptoms after an infection.
The affliction continues to confound the medical establishment. Long-haulers are men and women of all ages who had all levels of COVID severity.
Physicians such as Dr. Ann Parker, who helped spearhead the post-COVID clinic at Johns Hopkins Bayview Medical Center, where Kels is treated, say early research has revealed some trends: Severe cases of COVID appear more closely tied to post-COVID conditions and vaccinations seem to provide protection from lasting cases. Omicron, compared to the delta variant, may produce fewer post-COVID cases, but it’s too early to be sure.
But, Parker said, “we still have more questions than answers.”
Parker pushed Johns Hopkins in spring 2020 to open the clinic, aware that patients discharged from intensive care units for any reason often need months to heal.
Many such clinics have since followed Hopkins’ lead, and they don’t just treat former ICU patients, but those suffering symptoms for weeks and months after more mild infections.
“We humbly acknowledged that we did not know what to expect for patients who had mild initial COVID-19 illness,” Parker said. “So, we set out to create a program to support our patients who would be recovering from COVID-19 and begin to understand what challenges they might face in their recovery.”
The clinic serves hundreds and many improve over time. Others continue to have fatigue, brain fog or shortness of breath, among more serious conditions. Many also have anxiety or depression.
Studies are ongoing, but already researchers say more attention and resources are needed for sufferers who continue to pile up.
The numbers are staggering: More than 76 million Americans have tested positive for COVID-19, the illness caused by the coronavirus, though the actual number is likely far higher. An estimated 10% to 30% may have persistent problems, but it could be as high as 80%.
Some are annoyed by a temporary loss of smell or a cough, while an estimated 5% are debilitated.
The Hopkins clinic and others deploy teams of doctors to diagnose conditions when they can and treat symptoms regardless. Dr. Panagis Galiatsatos, a Hopkins pulmonologist and critical care doctor, is among them.
He puts patients into three categories: Those healing after a hospitalization; those developing new conditions, such as asthma or high blood pressure; and those with no new disease, though the patients have symptoms.
“This is really the tough one,” he said of the last bucket. “We’re not turning to a textbook and seeing it. An example is fatigue: What’s causing that?”
Galiatsatos said other viral infections, including other coronaviruses such as SARS and MERS, have been known to kick off new disorders. But none have at this scale.
The common thread, Galiatsatos said, is that patients are glad someone is listening and trying to treat them.
That motivates Priya Duggal, a professor in the Johns Hopkins Bloomberg School of Public Health’s Department of Epidemiology who is studying long-haulers.
“The first step is saying, ‘Hey, it’s real. We believe you,'” she said. “The second stage is determining what we know about it, what we can learn about it and how we can treat it.”
Duggal and her colleagues posted an online questionnaire and aim to collect information from 25,000 people across the country. They are about halfway there.
The form asks if people have been vaccinated, their initial and continuing symptoms, plus preexisting conditions and demographic information. Volunteers can be anonymous or agree to be contacted again.
She said past studies haven’t always been representative of sufferers. For example, women were initially thought to have more post-COVID conditions, but that impression was likely because they agreed to treatment and studies more often.
“Who is reporting their cases and who is speaking up?” she said. “A year from now, we hope it’s more representative.”
Another larger study sponsored by the National Institutes of Health launched in June and is called RECOVER. It will involve 100 researchers at more than 30 institutions and aims to reveal trends and inform new approaches to diagnosis and treatment.
“The goal of the newly funded RECOVER studies, in adults, children, and in pregnant women, is to fully understand the long-term consequences of COVID-19 and the pace and extent of recovery over time,” said Dr. Stuart D. Katz, the principal investigator and a heart doctor at NYU Langone Health, in a statement at the study’s launch.
RECOVER, which stands for Researching COVID to Enhance Recovery, will track tens of thousands of diverse patients to see the long-term effects through questionnaires, lab tests and other means.
Dr. Andrea Levine has been caring for patients in the University of Maryland Medical Center’s post-COVID clinic. She said sharing findings from studies and from the clinics will be key to helping patients. She has hundreds of patients and some still have no answers.
About 10% have suffered more than a year, said Levine, a pulmonary and critical care specialist at the Baltimore hospital and an assistant professor in the University of Maryland School of Medicine.
Some patients just stop making appointments, but she doesn’t know if they improved or gave up.
Levine also doesn’t know how many patients never came in for lingering issues either because they didn’t know they had COVID-19 or never bothered to seek care.
“How many people had a persistent cough that lasted more than a month after COVID and didn’t seek care?” she said. “How many people have a fever and chills and were exposed to someone with COVID, but never tested themselves or the rapid test was falsely negative?”
Levine hopes ongoing research will capture all types of people and symptoms and reveal those most likely to have post-COVID conditions.
That might help prevent more cases and help those without answers, such as those who were healthy before COVID-19 but are now short of breath when walking up stairs. For now, her main advice is to build back to normal activities slowly.
“I don’t know what causes that,” she said. “Thankfully, one thing we do know is completing a two-dose regimen of vaccine seems protective against long COVID.”
Levine hopes for that reason, the wave of people with omicron infections after vaccination won’t produce a proportional wave of long-haulers. Maybe the variant itself will prove less likely to produce post-COVID conditions or those who take new antiviral pills to treat COVID-19 won’t suffer long term.
None of that comes in time for Destiny Banks, who tested positive for COVID four days before her 28th birthday in August 2020. She spent 99 days in the University of Maryland Medical Center, some on a lifesaving machine that pumps oxygen into a person’s blood before returning it to their body.
Before her infection, she was athletic, a singer and a government worker. Afterward, she spent months in her parents’ care, relearning to walk, drive and even talk consistently, as a persistent cough interrupted her speech.
Banks’ new husband still carries groceries and sometimes helps her up the stairs, though to her delight she’s been able to begin singing again and is building a business booking singers called Plugged In DMV. She still sees doctors, including Levine, has been fully vaccinated against another infection, and a new medication has calmed the coughing.
Doctors can’t tell her why she was hit so hard, or how much more she can expect to improve.
“I’m thankful to God and I’m grateful for my doctors, the hospital and my family,” she said. “But I’m prayerful that eventually COVID won’t be a death sentence and more like a regular cold, where there aren’t these lasting effects.”
Kristy Wheeler, an operating room nurse at the University of Maryland Medical Center, was 36 when she caught COVID-19 in December 2020 after a work exposure — just before she was eligible for vaccination. She felt lousy, but didn’t need hospitalization.
But her headaches lasted a month, she still has a cough and gets winded on stairs. She’s returned to walking 9 to 10 miles a day on the job and with her dog, but it can be a struggle. Sometimes her brain feels foggy.
“I remember trying to explain to someone how a gunshot wound around the body like a pinball, and I was making the motion with my hands, but couldn’t come up with the word,” she said.
“I was forgetting meetings, and everyone who knows me knows I’m always on top of things and organized. To feel disheveled rocked my little world,” she said.
Wheeler pushes herself to return to her previous lifestyle, one without health concerns. She’s trying a new cough medication.
“I hope we find the magic answers,” she said. “I don’t know if it’s going to happen.”
Rosario, the Hopkins Bayview patient, also is moving on with his life, working in a car dealership office and hanging out with friends — though such a gathering is likely how he was infected, despite vigilance about safety while socializing.
Only one of his infections was serious enough to require hospitalization for pneumonia, but the pandemic has taken a toll, prompting Rosario for a time to take part in a support group. He thought that he should be better in a day or week or month, and felt angry when it didn’t happen.
“The fear for me for a time was I’m going to be 30 and going on disability,” he said.
Now he wants fellow long-haulers to understand they should “have the day you have,” he said. “I realized every day is a new day that starts filled with hope, so focus on that day. The rest will follow, don’t worry.”
