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.
A registered nurse at Queen of the Valley Medical Center in West Covina, Martinez spent three months in a hotel after the coronavirus pandemic hit California to avoid bringing home the virus. Four months after she returned at her family’s request, Martinez was infected with COVID-19.
“The (chest) X-rays are scary,” she said. “It looks like ground glass. That’s COVID.”
She was only hospitalized three days at Keck Hospital of USC. But almost four months later, Martinez still hasn’t fully recovered.
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-to-day 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.”
Martinez’s last chest X-rays, taken in December, still showed the distinctive inflammation caused by the coronavirus. Even climbing a stepladder at work can make her light-headed and dizzy.
“Sometimes, I get short of breath. If I do too much activity, I get short of breath,” Martinez said.
‘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. 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 still has extreme mood swings and can get snappy, but he doesn’t scream or yell or burst into tears much anymore. But there’s still the lingering fatigue. The physical weakness. The shortness of breath. The brain fog that clouds his memory. He still gets serious headaches – “mini-migraines,” he calls them – which can usually be beaten back with a warm compress and a half-hour’s rest. And he usually lays 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 long-term 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, Feb. 2, in the Journal of NeuroVirology on the persistent “brain fog” in younger patients with mild-to-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.
Extent of problem not known
It’s not clear how many people are suffering long-term 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.”
More than 3 million Californians have contracted the coronavirus that causes COVID-19. Ten percent — 300,000 people — is more than the population of Irvine.
Patients who suffer long-term effects of the virus can suffer a wide variety of symptoms.
“COVID seems to affect seemingly every organ system,” Rao said. “It’s a systemic viral illness.”
The initial symptoms of the disease — muscle weakness, headaches, nausea — don’t go away for long-haulers, and may persist for months.
“We all have to remember this is a brand-new virus,” Currier said. “There’s still so much more that we need to learn about it.”
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.
Lab mice may hold the key
Thomas Lane has been preparing for the COVID-19 pandemic and its long-term 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.”
The mother of Lane’s daughter’s best friend got COVID-19 and now suffers from “brain fog.” Ongoing neurological problems may be the most common long-term problem suffered by those who contract the disease.
“She recovered, but she said ‘I’m just in a fog half the time,’” Lane said. “It’s a real situation.”
Complicating things further: COVID-19 victims can have strokes, due to the blood-clotting aspects of the disease. And strokes bring their own cognitive problems.
“When you have strokes, you don’t always recover back the neurological baseline,” Rao said.
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. And 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.
As for Martinez, the La Puente nurse got her first coronavirus vaccine shot Monday, Feb. 1. And she’s once again quarantining in a hotel, worried she might get infected with the new coronavirus variants and bring them home to her family.
In September, her worst nightmare came true: Her husband, 2-year-old granddaughter, son and fiance all got infected with the coronavirus. At the time, five adults and three children lived in her house.
“I know it’s the best thing for my family,” she said, crying. “If it was just my husband at home, it wouldn’t be so bad, because we could stay in different rooms. But I have my kids and grandkids there.”
And she’s still living with the consequences of getting infected in September.
“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.”
Source: Orange County Register
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