Kelly Hickman knows exactly how she got the novel coronavirus: Attending a friend’s wedding in early March, just before scattered outbreaks around the globe coalesced into a pandemic.
What the 37-year-old Seattle woman doesn’t know is when — or if — her life will get back to normal.
Though her initial infection was mild enough that she kept working from home, Hickman soon found herself plunged into a cycle of crushing fatigue and brain fog so impenetrable she couldn’t read a book or follow the plot of a movie. Her skin felt like it was on fire. She had to quit her job and for months could barely get out of bed.
As the pandemic enters its second year, Hickman still hasn’t regained her formerly robust health.
“Is this chronic? Is this my life now?” she asked. “I don’t know and the doctors don’t know.”
“Long-haulers” is one of the terms used to describe people like Hickman, for whom COVID-19 is far more than a passing disease. Many have been slammed with symptoms that persist long after their bodies have cleared the virus and disrupt a bewildering array of body systems: The lungs, of course, but also the heart, kidneys, digestive tract, brain and nervous system. While protracted recoveries are common among the sickest, most vulnerable patients, the long-hauler ranks are also filled with younger people with no underlying medical problems and who were never hospitalized.
Even as vaccines promise an eventual end to the pandemic, people who have already been infected and some of those who fall ill in the coming months could continue to struggle with fallout from the virus far into the future.
Physicians and researchers are just beginning to investigate, launching long-term studies of patients — including several in Washington. Laboratory studies are also underway in Seattle and around the world to figure out how a respiratory virus that most people bounce back from in a few weeks can, for some, trigger a debilitating cascade of ailments.
“This is a phenomenon that is … real and quite extensive,” Dr. Anthony Fauci, the nation’s top infectious disease expert, said last month during the first federal workshop to discuss long-term impacts and map out a research agenda.
A physicians group in the U.K. estimates one in 10 infected people may have prolonged symptoms, while a new Chinese study found three-quarters of hospitalized patients reported at least one lingering symptom six months after becoming sick. Even a small percentage of the 23 million diagnosed in the U.S. would represent a major public health challenge, said Dr. Aaron Bunnell, who leads a UW Medicine rehabilitative clinic for post-COVID patients — one of many popping up across the country.
With cases surging this winter and many Americans shrugging off the risk, Hickman has been watching with dismay. “They talk about quarantine fatigue, but I have actual fatigue,” she said. “I don’t have any way to communicate to people how serious this can be.”
Wide range of symptoms
As scientists mobilize, patients are doing the same. Body Politic, one of many online support groups, now has more than 18,000 members. The group is collaborating with researchers who themselves have suffered drawn-out illnesses. A new survey of nearly 3,800 people with “long-COVID” found that nearly half hadn’t resumed their normal work schedules six months on.
Fatigue is the most common complaint, followed by inability to focus or concentrate. Others include heart palpitations, chest pains, problems with balance, shortness of breath, insomnia, impaired memory, intermittent fever, hair loss, diarrhea, and persistent joint and muscle pain. Some survivors are gripped by psychosis.
“It’s been a rolling wave of: What fresh hell is this?” said 54-year-old Anne McCloskey of Seattle.
Her initial infection was nasty — and classic: Fever and pneumonia that had her gasping for air; loss of taste and smell. Then things got really ugly.
McCloskey developed clots in her lungs and a wheezing condition very much like asthma. The lining around her heart became inflamed. She started getting migraines for the first time in her life, along with a kind of vertigo that made it feel like she was bobbing in a boat.
Her pulse rate took sudden plunges that left her faint. Her kidney function veered into the red.
“One my doctors told me I’m like a case study,” she said. “It’s been horrible. I’ve lost eight months of my life.”
The virus seems to wreak particular havoc on people with preexisting conditions. McCloskey’s is an autoimmune disorder that affects the nerves. It had been in remission but was kicked back into overdrive by COVID-19.
There’s still no clear explanation for the many complications of long-COVID, said Dr. Jonathan Himmelfarb, director of UW Medicine’s Kidney Research Institute. One leading theory is that some people’s immune systems have a runaway reaction to the virus, which can cause the body to attack its own cells and tissues, he explained. The opposite — immune system repression — also seems to occur in some people.
Other possibilities include direct viral attack on multiple organ systems or damage related to clotting triggered by the infection. Some scientists think COVID-19 might disrupt the body’s autonomic nervous system, which controls processes like breathing and heart rate. Others are exploring whether hidden reservoirs of virus can persist even after people test negative.
“The stories we have now are more or less anecdotal,” said Himmelfarb, who participated in the federal workshop. “The whole purpose was to ask: How can we better and more rigorously define what needs to be studied … to understand these long-term effects.”
Other viruses, like SARS and Ebola, can trigger lingering health problems. It’s also common for patients who have been on ventilators or in the ICU to require rehabilitation, said Bunnell. But many of his post-COVID patients seem far more battered.
“I do think there’s something unique about COVID,” he said. “It just seems to be more aggressive.”
Post-COVID treatment, therapy
For Joe, a 65-year-old Spokane resident who asked to be identified by his first name, the virus changed everything.
He’s pretty sure he got infected in July during a five-minute, unmasked pickup ride with a friend. The friend fell ill the next day, and it wasn’t long before Joe started having chills and aches and wound up in the hospital.
His doctors at MultiCare Deaconess Hospital were concerned because Joe has an underlying lung disease that had been reined in by treatment. When inflammation from the virus ravaged his lungs, his disease roared back, causing irreversible damage.
“I went from being able to walk a mile quite easily to barely being able to walk to the restroom with oxygen,” he said. Now, his only hope for recovery is a lung transplant.
Lloyd Young, 76, didn’t suffer such profound lung damage, but it took him five months to recover from his bout with COVID-19. The retired union electrician spent 19 days in intensive care. “I was sitting on 50-50 odds,” he recalled. When he left the hospital, staff lined the hallway and cheered.
He was still weak as a baby and dependent on oxygen. Respiratory therapy at Swedish Medical Center’s COVID recovery clinic helped build back his strength and lung capacity. Young is now strong enough to fish and walk the dog, but he still needs oxygen at night.
The Swedish clinic was created for people who had been critically ill, like Young, said pulmonologist Dr. George Pappas, and many are doing well. Now the program has expanded to include people who were never hospitalized.
The idea is to pull together specialists from across multiple fields, Pappas explained. Another goal is to figure out what treatments work and whether there’s any way to predict who’s most at risk of lasting disability.
“Why does one person make a great recovery and one person have difficulties?” Pappas asked. “This is such a new illness there is so much we don’t know.”
Normalcy and relapses
David Barnett seemed the type of person who would rebound quickly after coming down with COVID-19 in mid-March. “I was 41 years old, 210 pounds of muscle, a body builder,” said the Snohomish County bartender. “Back then, nobody thought somebody like me was going to get sick.”
In fact, he seemed to be getting better after a week of moderate symptoms.
“I was just eating my breakfast, thinking I was beating this thing,” Barnett recalled. “Then I stood up and passed out.”
His oxygen levels plunged and his heart was racing so fast his girlfriend, who’s a nurse, feared he might be having a heart attack.
By June, he was still unable to do something as easy as pumping gas without his heart rate going crazy. His brain couldn’t track the simplest task.
“I would try to make something in the kitchen and find myself standing in a closet with a fork.”
Finally an emergency room doctor helped connect him with a suite of specialists: neurologist, cardiologist, pulmonologist, nephrologist.
Since then, it’s been a constant and frustrating cycle of appointments and tests — many of which come back normal. His neurologist is convinced his autonomic nervous system is off-kilter.
“The docs say the virus did something and my body needs to reset, but they don’t know how long that’s going to take.”
Barnett celebrates small victories, like being able to walk half an hour. “I’m a man’s man,” he said, “and this has put me on my knees. I have never cried so much in my entire life.”
Barnett is lucky in one way: His infection was confirmed by a positive test. He didn’t face the skepticism encountered by many long-haulers who got sick when testing was almost impossible to come by.
Steve Holmes, 33, checked off nearly every COVID-19 symptom in early April, but by the time he was able to get tested, the results were negative.
For most of the spring and summer, total rest was the only way to keep his symptoms from flaring. “It’s embarrassing to tell anybody how difficult my days are,” he said. “I went from working 80 hours a week to literally doing nothing 24/7.”
Every time Holmes tried to go back to work, his chest would seize up after a couple of hours. The Seattle brewery where Holmes worked as an engineer and project manager was understanding at first, then lost patience. Under pressure from his bosses, he eventually resigned.
Long-COVID is often marked by relapses, which have been the theme of Holmes’ experience. Three consecutive days feeling normal is cause for elation. Then new symptoms arrive and he despairs of ever getting better. Diarrhea and intestinal infections recently morphed into allergies that make his mouth swell when he eats raw fruit and vegetables.
And like many long-haulers, Holmes has had a hard time finding physicians who know anything about the virus’s long tail.
“A lot of us don’t even talk about coronavirus with our doctors anymore,” he said. “Now it’s just evolving symptoms or patterns.”
Studies, signs of hope
Seattle researchers are involved in at least three of the many observational studies being launched to delve into COVID-19’s long-term effects. Two are based at the VA Puget Sound Health Care System and will collectively monitor 9,500 veterans who have had COVID-19, gathering blood and other specimens, tracking health problems and psychological impacts and evaluating rehabilitation regimens.
UW researchers are part of a national study called INSPIRE that will follow nearly 5,000 post-COVID patients over two years.
Researchers at Seattle’s Institute for Systems Biology are devising blood tests to detect viral fragments or residual pockets of infection that might be responsible for the chronic inflammation that plagues many long-haulers. And Himmelfarb, the UW kidney specialist, is approaching the problem from a fundamental level. In laboratory studies, he and his colleagues are using something called organoids — masses of lab-grown tissue that resemble human kidneys — to determine whether the novel coronavirus directly infects kidney cells.
The research is unlikely to yield quick solutions for the early long-haulers whose lives remain upended. But some are beginning to see signs of hope.
Holmes, who used to run long distance at a pace of 8.5 minutes per mile, now occasionally feels good enough to cover a mile, though it takes him more than twice as long. Hickman has started to do contract jobs, leaving time in her schedule for rest and mediation to help her cope with her new limitations.
Physicians who treat patients with long-COVID symptoms are only getting busier. While the post-holiday peak in new infections and hospitalizations seems to be leveling off, the Centers for Disease Control and Prevention forecasts an additional 1.5 million Americans will get the virus in the next month. UW Medicine’s COVID-19 rehabilitation center is seeing more people every day seeking help when recovery is not quick and easy.
“It’s really starting to ramp up again,” said Bunnell.