What if your COVID-19 symptoms remain?
‘Long-haulers’ facing numerous problems after fighting off virus
Daisy Martinez did her best to avoid the coronavirus.
“Everyone was kind of shocked when I came down with it, because I was so protected. I always wore the PPE, washing my hands,” said Martinez, 56. “I was always doing the extra.”
But she caught the virus, as have millions of other Californians. And, like potentially hundreds of thousands of Californians, it’s with her still months later.
“The (chest) X-rays are scary,” said Martinez, a registered nurse at Queen of the Valley Medical Center in West Covina, who spent three days in the hospital with the virus in October. “It looks like ground glass. That’s COVID.”
Experts aren’t sure how many “long-haulers” such as Martinez continue to see long-term health problems after contracting COVID-19. And they don’t know why so many people suffer from continuing neurological, heart, lung or other problems. But scientists are desperate to find answers.
“Focusing so much on mortality
on one side, and on ‘it’s just the flu, folks, get over it’ on the other, completely overlooks the fact that there are long-term consequences,” said Richard Carpiano, a public health scientist and medical sociologist at UC Riverside. “Even though you may recover, you can have nerve pain and brain fog that persists for months. That can have real impact for people in their day-today lives, when they’re trying to hold down jobs and take care of their families — real social impacts and real economic impacts.”
It’s been true for Martinez.
“To this day, I’m still on modified duty,” she said. “I’m doing monitor tech, I’m doing secretarial duty.”
Even climbing a stepladder at work can make her light-headed and dizzy.
‘Long-haulers’ still struggling
There could be enough Californians like Martinez to fill a large city.
“COVID-19 is a disease of extremes. Some people can be asymptomatic and some people can be on a ventilator,” said Dr. Judith Currier, chief of UCLA’S Division of Infectious Diseases in the Department of Medicine. “There’s a full spectrum of outcomes. Most people do recover completely, but there are people who have lingering signs and symptoms.”
Ten months after COVID-19, Oakland resident Cliff Morrison has learned to recognize the mood swings coming: a feeling of frustration that grows. And grows.
“On the phone with my oldest brother, I told him everything I had always wanted to tell him, and I didn’t remember. He said, ‘You don’t remember? You called me every name in the book!’” said Morrison, 69. “It broke up a relationship, half my family won’t talk to me, if people called when I was in a miserable state I found myself lashing out and I don’t remember.”
He doesn’t scream or yell or burst into tears much anymore. But there’s still the lingering fatigue. The shortness of breath. The brain fog that clouds his memory. He still gets serious headaches — “mini-migraines,” he calls them — which usually can be beaten back with a warm compress and a half-hour’s rest. And he usually lies down for a few minutes every day after lunch, just to gather his strength.
Morrison is not letting his misery go to waste. He’s participating in a UC San Francisco study on the longterm fallout of COVID-19 and has found comfort in the doctors there.
Neurologist Joanna Hellmuth of the university’s
Memory and Aging Center told him, “All you can do is go back and apologize to them, and then forgive yourself.”
Hellmuth is the lead author on a paper published Tuesday in the Journal of Neurovirology on the persistent “brain fog” in younger patients with mildto-moderate COVID-19. Of 100 patients between age 35 and 56 recovering from the virus, none of whom had been hospitalized, 14 reported persistent cognitive symptoms that lasted at least 14 weeks.
Cindy Piccinini, of Santa Rosa had COVID-19 in early March — before lockdowns, before tests, before anyone understood what lay before us.
“In the months following, I was losing handfuls of hair every day,” she said. “When I started walking again, I couldn’t go far because I would get out of breath and my legs felt like they were filled with cement. The brain fog made working difficult. My family didn’t believe this was all related to COVID.”
Piccinini, 64, never did get a COVID-19 diagnostic test. She didn’t get confirmation of her infection until she gave blood months later and learned she had antibodies. Nearly a year later, she still can’t make it through the day without taking a nap. She often feels anxious.
“I used to be a great multi-tasker, but can’t focus on more than one thing at a time now,” she said.
It’s not clear how many people are suffering longterm consequences of the disease.
“There is a small group of patients that seem to have long-term complications of this acute infection,” said Dr. Adupa Rao, an assistant professor of clinical medicine and the director of research for USC’S Center for Advanced Lung Disease. “We think that number is something around 10% of the infected people.”
In California, where more than 3 million have contracted the coronavirus that causes COVID-19, that would be 300,000 people.
One possibility scientists are looking at is whether early treatment can help prevent long-term complications.
“Not only does early treatment reduce the chance of hospitalization and death, but does it reduce other complications?” Currier said.
Does the virus reside in the brain?
Thomas Lane has been preparing for the coronavirus pandemic and its longterm consequences for decades.
“I’ve ironically been doing mouse coronavirus research for 20 years,” said
Lane, a professor of neurobiology and behavior at UC Irvine. “Who cares, right? It was a great way for studying neurological disease.”
Ongoing neurological problems may be the most common long-term problem suffered by those who contract the disease.
Lane suspects COVID-19 moves into patients’ central nervous system.
“The viruses love the brain because they can persist there,” Lane said.
Other viruses, including HIV and herpes simplex, do the same. Many antiviral treatments don’t penetrate the brain, he said.
“A lot of viruses, they’ll be with us a lifetime,” Lane said.
He’s now studying mice infected with COVID-19, including older mice and cognitive tests.
“I’m very confident that we’re going to get some answers down the road,” Lane said.
How long will symptoms last?
Rao worries those with long-term complications may not get examined by doctors. As a result, scientists may not know for years — or decades — how serious the long-term symptoms are.
“I’ve got kids at home and my worst nightmare is that my 20-year-old at college won’t know he has complications from COVID until he’s 50,” Rao said.
In September, the worst nightmare came true for Martinez, the nurse in West Covina: Her husband, 2-yearold granddaughter, son and fiance all got infected with the coronavirus. At the time, five adults and three children lived in her house.
“Everyone’s ‘recovered,’ but what is recovering?” she asked.
Martinez can’t take comfort in knowing when — or if — she’ll ever make a full recovery.
“I don’t know. We don’t know. It’s the unknown.”