TAMPA, Fla. — Annrene Rowe said COVID-19 hit her "like a ton of bricks." Little did she know, a year later she’d still feel the impact.
Rowe, like as many as 85% of the people who have had the coronavirus, is suffering from symptoms from what doctors call “long COVID,” or “long-hauler COVID” when symptoms linger long after the acute phase of the illness has passed.
She said the virus landed her in the hospital and the ICU for several days. In the months that followed, she said she learned she had scarring of her lung and heart issues.
“I’ve never been without symptoms any given day,” she said.
She compiled a list of 22 symptoms she presented to her doctor. She also described fatigue, shortness of breath, brain fog and losing 75%of her hair. All of which impact her everyday life, making things like cooking, gardening, even lifting a utensil, more difficult.
“It impacts it greatly, greatly. I used to ride my bike around the island all the time, I don’t ride my bike. Just being social for one is the big impact and then waking up and not knowing what kind of symptom I’m going to have every day,” Rowe said.
She’s not alone. More than half a dozen people shared the life-changing impacts of COVID-19 with ABC Action News.
Heather Hall said she caught the virus in June, spending time in and out of the hospital with blood clots. Eventually, she said there was fluid around her heart. Now she says following up with doctors on her medical care is a full-time job.
“I do have a clotting disorder now from it. I also am really short of breath every day and it’s been 10 months,” Hall said.
Juan Barona said he’s had stomach issues and fatigue since his December illness.
“Apart from what you’re feeling physically, that takes a huge toll on your mental stability and I think that’s what gets people even worse,” he said.
Daniela Mancilla is still at a loss why it’s hard to catch her breath.
“Now my day-to-day life, I love to exercise. Now I can’t anymore. It’s just super hard for me to just breath basically," she said.
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Meanwhile, Glendalie Kennedy, just a few weeks out of a hospital stay, is worried about long-term impacts such as walking and breathing, which now take extra effort.
“I want to put awareness when we’re released from the hospital we’re not getting help like with dealing with our symptoms like I don’t know where to go to really get help,” she said.
Vitas Martinenas describes symptoms that are now a constant after a mild case of COVID-19. He said he has what some call "long COVID."
“Being a relatively healthy person I thought well if I do get it I’m probably going to be okay after a while which was the case. But at the time I never heard of long COVID, I didn’t know such a thing existed. I just can’t believe this is happening to me it’s just really affected my quality of life quite a bit,” he said.
He turned to the Tampa General Hospital Transitional Care Center.
The center once called the "COVID Confirmed Clinic" is helping patients with the impacts of the virus.
Dr. Asa Oxner, a primary care doctor and associate professor at the University of South Florida, said they’re seeing plenty of cases of what some call "long COVID."
“The ones that really really get patients down the most are neurologic or respiratory. You know in terms of the neurologic ones we’re talking about people who were very highly functioning before. They were lawyers, they were nurses, they were doctors, and now they can’t figure out what order to like get their kids ready in the morning, get them out of the house and get them to work,” she said.
She said they automatically ask to contact patients one month and two months out of their acute illness, and are applying for grants to do different studies.
“We don’t know exactly, scientifically, on a molecular level, what causes long hauler COVID,” she said.
Studies and surveys are mapping out how common it may be, and what symptoms are experienced.
A recent study analyzed data from users of a COVID Symptom Study app. It found 1 in 20 people are likely to suffer from COVID-19 symptoms lasting more than eight weeks.
Another study out of Stanford University found more than half of the individuals in its study reported some lingering symptoms after four months, even in non-hospitalized patients.
“We really don’t know how long these symptoms might last and how severe they might be,” said Dr. Prasanna Jagannathan.
Research from Mount Sinai looked at patients believed to have post-acute COVID-19 syndrome. It found symptoms included fatigue, loss of concentration, weakness, headache and dizziness. Dr. David Putrino said people who experienced less severe infections had highly debilitating symptoms.
A recent study from Northwestern Medicine found out of 100 non-hospitalized "long hauler" patients it studied, 85 percent had at least four neurologic symptoms, the most common being brain fog.
Another survey distributed through online support groups and social media received thousands of responses, with most reporting they hadn’t returned to their previous level of work by 6 months.
NATIONAL INSTITUTES OF HEALTH LAUNCHED INITIATIVE
Now with more than $1 billion in funding from Congress to study the long-term impact of the virus, researchers at the NIH are launching an initiative to study "long COVID."
“I think what is most striking is you have these individuals who had relatively mild disease in the acute phase, and now they have devastating symptoms after that and so that is the most concerning,” said Dr. Avi Nath.
He’s the clinical director of the National Institute of Neurological Disorders and Stroke. They’re studying the neurological complications of the virus, as well as looking at patients with long-haul symptoms that overlap with ME/CFS patients, a group they already have data on to compare and which he says there is a lot of overlap.
He said there are several hypotheses they want to test as a cause of long-hauler COVID, including:
- An inadequate immune response to the virus
- An immune system dysregulated by the virus
- Energy failure, caused by injury to the system that regulates brain or muscle functions.
“I have high hopes we will get something substantial because you have a lot of bright minds all around the country everybody thinking on, focusing on this stuff trying to figure out what to do,” Nath said.
PATIENTS LOOK TO RESEARCH
Patients like Kristen Kowall are turning to research for answers.
“Right now I’m a long-hauler COVID patient,” she said.
Kowall said she had COVID-19 last June. While the impact was enough to drive her to visit the hospital, she was never hospitalized.
“It’s just frustrating because I want to do so many things and now my body just won’t let me do it. So it’s difficult it’s not fun. It’s hard on my fiancé he’s had to pick up a lot of slack. My son, I know he’s worried about me all the time,” she said.
Ten months after contracting the virus, she said nerve pain, joint pain, nausea, heart rate issues and brain fog persist. She’s now participating in a survey.
“For 32 years I could walk normal, I could write on a piece of paper normal. I could fold laundry normally. Now it might take me three days to fold laundry because I can only do so much of it at a time and it hurts,” Kowall said. “So my quality of life is just diminished. Severely.”
ORGANIZATIONS FORMING TO HELP
While patients across the country work to navigate the daily challenges, they’re teaming up with each other and the medical community.
“This is really the shadow pandemic and we really needed to start yesterday in planning and that’s what we’ve been doing at Survivor Corps,” said Diana Berrent.
She founded Survivor Corp. and says the movement has now grown to more than 160,000 members.
“We are generating groundbreaking research and we have completely reinvented how citizen science works. We have re-established it as citizen scientist collaboration and we are the voice for you know so many Americans who got COVID and they survived, but they have not recovered,” she said.
They’re gathering information on research, resources and even treatment, like monoclonal antibodies, for those diagnosed with COVID-19.
“We feel a fire in this work because collecting the existing knowledge of the chronic illness community has led us to this conclusion that we need to move fast,” said Emily Taylor, the initiative’s director of advocacy and community relations.
She said organizations that might have competed for funding in the past, are now coming together to compare data and make sure this patient population is cared for, researched and those disparities are addressed.
“I think all of this sort of speaks to a larger cultural shift about changing the narrative, believing patients, especially, especially women and people of color who are predominately affected by long COVID,” said Taylor.
Many patients are connecting over social media, too.
Annrene Rowe said she has found comfort in the support through these groups, finding others with a shared experience, and is able to offer help herself. Looking forward, she holds onto hope.
“Every single day I celebrate every accomplishment every little thing that I do I celebrate,” she said.