Long Haul Journeys With COVID-19: South Florida Research Hopes To Track Lingering Symptoms
Nova Southeastern University was awarded $4 million from the CDC to study people left with lasting symptoms after recovering from COVID-19. It'll track people like Godfrey Edmond from Miami Gardens.
Memorial Healthcare System's very first patient with COVID-19 — that they're aware of anyway — was 51-year-old Godfrey Edmond, from Miami Gardens.
He's technically recovered from the virus. But about 10 months later he's still affected every day by the symptoms it's left behind: Nerve damage, balance issues.
"I'm a true living testimony. It is real. I lived it. My family has lived it and we're still dealing with it," Edmond said.
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Doctors are starting to learn more about people who continue to suffer from symptoms after surviving COVID-19.
They're often called "COVID-longhaulers" or people who suffer from "long COVID."
And researchers in South Florida are working quickly to find ways to treat them.
Edmond started to get sick in March, just as the virus began to shut down South Florida.
"I was taking a trip out of town and I was kind of under the weather before I left. And when I returned, it got worse. And so I went to the hospital and that was when it went downhill," he remembers. "I had a cough, I had a slight fever, and I had shortness of breath. I could taste and smell. That part never left."
He'd flown to Chicago for a weekend getaway with his girlfriend. When he got back, Edmond said it was the shortness of breath that scared him enough to go to the hospital.
After some tests, he tested positive for the coronavirus and was admitted.
"That's when I was kind of worried, like because it was so new back then, I'm like COVID-19 like, exactly what is it? It was so new," he said.
He was there for six weeks — no visitors. Just a cell phone.
"I didn't know if it was day or night. I didn't know if it was Sunday or Monday or the date, the time, anything," he said.
21 days of that time was spent in a coma.
Slowly he got better and tested negative. But about 10 months later — he doesn't feel like himself before COVID.
"The nerve damage is what's ailing me now. I can't feel my left foot so that throws the balance off as well. It's improved over time and rehabbing," he said. "I can do a lot of things now, but there are other things that I can't really do quite yet, like do my own lawn, walk long distances. I'm not back at work yet, so I still have a little ways to go."
Godfrey operates heavy equipment for the Miami-Dade Water and Sewer Department — and right now, he can’t mow his own lawn.
He thanks good insurance and vacation and sick time he'd had saved, but it's still been a long time to spend unable to work.
There are different kinds of lingering illness after COVID-19.
Harvard Medical School estimates that tens of thousands of people in the U.S. experience some symptoms.
Dr. Nancy Klimas is the director of the Institute for Neuro-Immune Medicine at Nova Southeastern University, in Davie. She's also a research director at the Miami VA.
Now, Klimas is studying the people who end up with almost textbook Chronic Fatigue Syndrome after COVID-19.
"I feel like my whole career to date was to get me ready to be able to help with this post-COVID crisis," she said.
Klimas said people with Chronic Fatigue Syndrome do usually get it after a virus.
"It's a neuro inflammatory condition of brain inflammation condition that follows a mysterious viral infection. So here comes COVID," she said. "You couldn't overlap them more tightly in terms of presentation. They have the racing heart fluctuations and blood pressure, all the inflammatory symptoms, all the same things are going on in these 'longhaulers,' including this profound fatigue."
NSU was awarded a $4 million dollar grant from the U.S. Centers for Disease Control and Prevention, for Dr. Klimas to study these longhaulers, or people who have symptoms for a long time after COVID-19. She'll work with the Florida Department of Health in Broward County.
She said the process to get a federal grant usually takes at least a year. And this time, it was three months.
"That's remarkably quick," she said. "We're going to ask people to let us follow them over the next three years and see how they do. And we'll get a sense of how the illness is presenting and if it's changing over time and how many are recovering."
Dr. Klimas said if you are recovering from COVID-19 there are things you can do at home to feel better:
"You have to listen, stop, go slow, eat as healthy as you can. Rest restoratively. Get enough sleep and then come back very slowly, and I think that you'll find that, if you don't do that, you could push yourself into a long term chronic illness," she said. "Getting these rehab doctors to listen to that 'go-slow' advice is one of my missions right now."
Edmond's rehab has been challenging. He does a combo of occupational and physical therapy a few days a week. He started in April.
"For example, if you stand on one leg with your eyes open, it's kind of easy," he said. "But once you close your eyes, it's kind of difficult. So it is a little things like that that I notice are difficult."
Becky Boyle is the director of rehabilitation services at Memorial Regional Hospital South.
"Godfrey was one of our very first patients that came through, and it was shocking to see how debilitated and how quickly the body could give up," she said.
"It was shocking to see how debilitated and how quickly the body could give up."
Since the pandemic, Boyle said about 10-15 of her department's rehab patients a day are people who are struggling with symptoms after having COVID-19.
She fears another surge.
"We're worn out. We're we're struggling to be able to keep up with this," she said.
Mostly, she sees people are craving anything that feels normal, or human. A touch. A smile. Those things are incredibly difficult to give to people under a hot gown with gloves and multiple masks and a face shield.
Boyle said that she's happy she works in the part of the recovery chain that keeps her going and lifts her spirits.
Yes, the people she sees have symptoms that aren't going away. But they are alive.
"They're recovering well, usually, when they come to us," she said. "Their outcomes are like Godfrey's and get to return home to their families."
Besides the nerve damage after COVID, these long-hauler patients are also coming to Memorial Healthcare System for rehab with lots of other traces the virus has left behind.
"Limited cognition or what some will call like fog brain. They have a hard time just absorbing information, learning new information," Boyle said. "So it could be every day kind of relearning the same thing."
While there's this incredible frustration and fear, healthcare workers at Memorial also get a reminder there are hopeful cases.
"When we discharge the patients, we learned very early on — especially even with Godfrey when he was one of our first ones — to celebrate that success," Boyle said.
"We play a song, the "Rocky" theme song, and we play it overhead in the hospital, so every patient knows," she said. "And that really is to remind us, like, our hard work and that blood, sweat and tears underneath those masks and gowns and goggles and all the stuff that we have to put on every single day to treat not only the patients with COVID-19, but also everyone else to keep them safe and keep us safe — It's worth it."
"I think I've heard three today, that means three patients have gone home to their families that might not have gone home," Boyle said.