AdventHealth Orlando’s post-COVID-19 care clinic this month produced its first official graduate.
Kathy Fennimore, 62, has overcome her post-COVID-19 conditions, also known as long COVID-19, after months of therapy. This is a victory she thanks clinic staff for and, most of all, God.
“[I’m] absolutely elated and grateful,” Fennimore said. “Other people don’t have the same success story. And I’m not sure why I’ve been allowed to have it but I don’t want to miss any opportunity that could help others or encourage others along the way.”
She had battled a lingering fever and continuous shortness of breath so severe that she was put on oxygen 24/7. She struggled to find the energy for daily activities as simple as dressing herself and working as a nurse manager for the emergency department float pool at AdventHealth Central Florida.
“I knew that if that was going to be my new normal, then I would pull up my bootstraps and I would deal with that. But I didn’t want it to be my new normal,” she said.
Now, she’s off oxygen and has transitioned from working at home with modified duties back to normal work.
Since March, AdventHealth Central Florida has been treating patients like Fennimore at a post-COVID-19 care clinic located in AdventHealth Orlando Medical Plaza, 2501 North Orange Ave., Suite 235.
This is one of only a few clinics in the state for the estimated 6% of people with symptomatic COVID-19 who go on to develop this condition, defined by the World Health Organization as a wide range of mental and physical ailments that last three or more months after a COVID bout and have no other explanation.
Like other clinics, it faces monthslong waitlists.
It’s hard to find treatment as a long COVID-19 patient. Even when patients get help, setbacks can be part of the recovery process. Research into this condition is new, causes aren’t solidified and there is no established gold standard treatment.
The health system led its first news conference about the clinic, which has seen 90 patients so far, on Tuesday morning.
“Many of these patients are floundering. They’re looking for answers, and they’re looking for help,” said Dr. Dwayne Gordon, an AdventHealth Medical Group internal medicine physician who leads the clinic. “I can’t say we have all of the answers, and I can’t say we have all of the help, but I can say what we’re doing is impacting patients in a meaningful way.”
Tanya Balyeat, 54, from Mount Dora, has struggled with lung damage, shortness of breath, exhaustion and short-term memory problems since catching COVID-19 a year ago.
Balyeat, a self-employed hairdresser, was one of AdventHealth’s first patients in March. Through efforts including physical and cognitive linguistics therapy, she had nearly recovered by the end of 2022. Then she caught two different respiratory infections and her symptoms returned.
Long COVID-19 isn’t only a physical condition, she said. The stress can be mentally draining and even traumatizing.
“I’ve had some days where I just thought, is this my life? Is this how I’m going to spend the rest of my life?” Balyeat said. “On the outside, I look fine, and then when I have my bad days, people just don’t get it. It’s not like I want to lay on the couch all day. I’m a single person who’s self-employed; if I don’t work I don’t get paid.”
The stress of missing work for Balyeat and others with the condition is compounded by the denial of its existence by some people, even though it has been recognized as a physical disability and the National Institutes of Health has been awarded billions of dollars to study it, with millions of that money going to Florida researchers.
Balyeat praises the care she’s received from her primary care doctor and from AdventHealth’s clinic but says she has been dismissed by other doctors and other people in her life.
“You go to the hospital to get help and they just look at you like you’re making it up,” she said. “I’ve had clients that tell me they don’t believe in long COVID. I’ve had family members look at me like I’m crazy.”
Gordon said during the Tuesday news conference that the majority of patients at AdventHealth’s clinic — over 90% — are struggling with mental health issues. The clinic commonly sees patients experiencing anxiety, depression, and post-traumatic stress disorder in addition to physical symptoms such as fatigue, breathlessness and insomnia, he said.
Balyeat is in the process of coordinating another appointment with AdventHealth’s clinic to address her symptoms, but she has a busy schedule as a hairdresser.
“I’m scared to death of getting that sick again. It plays on the psyche,” Balyeat said. “And then the trauma of having doctors not believe me is so frustrating.”
Overcoming long COVID-19 takes a while. Symptoms may improve in just a few weeks, but recovery at AdventHealth’s clinic typically takes three to six months, Gordon said.
“Many of the patients do have similar symptoms and require a fairly well-paved pathway that we’ve started seeing,” Gordon said.
AdventHealth’s clinic conducts 60- to 90-minute patient evaluations, which means only a handful can be seen per day. He also believes the approach of having doctors from multiple specialties evaluate a patient has been essential.
At AdventHealth’s clinic, a multidisciplinary team including a neurophysical therapist and a behavioral health specialist collaborate to assess patients and refer them to pulmonologists, neurologists, cardiologists and other specialists if needed.
AdventHealth’s Translational Research Institute has partnered with the clinic to study how long COVID-19 has impacted patients’ physiology.
Physicians with potential candidates for the clinic or interested patients can email CFD.PostCOVIDClinic@adventhealth.com or call the clinic at 407-821-3560.
Other Florida post-COVID-19 care centers and their contact information can be found on the website of the Survivors Corp, a grassroots patient advocacy effort.
Support groups have also sprung up, such as COVID-19 Long Haulers Support on Facebook.
Ccatherman@orlandosentinel.com; @CECatherman Twitter