- Exploring long COVID, Part 1: Why don't we know more about it?
- Exploring long COVID Part 2: What's it like to have it?
Kathy Fennimore tested positive for COVID-19 in May 2021. She was fully vaccinated and her symptoms included nothing more than a mild fever.
"I thought it a cold actually. It was pretty mild for the first few days," she said.
The fevers stuck around for five weeks. Her breathing increasingly became weaker and three months later she was diagnosed with long COVID.
Fennimore believes her underlying medical condition of scleroderma, an autoimmune disease of the skin, made her susceptible to long COVID. Fennimore, a resident of Delaney Park, lives in a beautiful three-story home, but climbing the 19 steps to reach the second floor became a herculean task. Even walking eight steps from her bed to her bathroom would leave her breathless.
"I couldn't make it from here to the bathroom without my oxygen level dropping in the 80s. Which you know, it's supposed to be like, well, for a normal person, it should be 95 or higher," said Fennimore, a senior nursing manager at AdventHealth.
Fennimore already had an oxygen tank to use at night due to her underlying condition, but her tank became a constant companion as her lungs grew weaker.
Her pulmonologist diagnosed her with long COVID and sent her to AdventHealth's Post-COVID Clinic, which opened last year after AdventHealth Orlando began noticing an increased demand for long haulers, said the clinic's lead physician Dr. Dwayne Gordon.
"So one of the things that I would say is, you know, we have the opportunity as a medical community to care for this increasing demand. And so that is what we're working on in our clinic is how do we increase capacity to take care of this robust demand?" Gordon said.
"What we do is we start off with an intake, we say, when were you first diagnosed with COVID? And then we go from there, we find out what their symptoms were. We find out when they were hospitalized. Did it require oxygenation? Did they have to go to rehab?"
Treatment
Fennimore's fevers subsided after five weeks, but she retained lingering fatigue, shortness of breath and brain fog when she started treatment at the clinic, which is equipped with a multidisciplinary staff of physical and occupational therapists, neurologists, cardiologists and pulmonologists.
While doctors aren't sure how to prevent long COVID from developing, there has been success in treating individual symptoms as they manifest. These methods are not considered the standard for treatment, yet, according to the National Library of Medicine (NIH), which states "although several guidelines on long COVID management have been released, there remains a large practical gap and specific treatments are not reviewed."
The NIH also states that comprehensive assessment through medical history and examination is essential for treatment. Once Fennimore's history was tracked, the clinic team started her on physical therapy and occupational therapy to improve her stamina and help her lungs.
"I dragged myself in, I wheeled in my oxygen, and I plopped into a bike and I rode the bike for a minute," she said. Doctors would keep an eye on her oxygen level, and when it would grow to an acceptable point, they would add an extra minute to her biking. "And we worked our way up in small increments to where I would do the stairs. I would walk around the center, just for some distance. We did bands. We did all kinds of fine motor exercises," Fennimore said.
To treat her brain fog, Fennimore met with neurologists for a different workout, which involved reading stories and asking questions or reading word lists and asking her to repeat them five minutes later.
It was stressful.
"On the inside, I was like, 'Oh, gosh, oh, gosh, oh, gosh,' " Fennimore said. "But you could see the progression where I can remember more of the story after each visit."
It was slow, frustrating work, and at times, discouraging.
"A low point was what do we do about this? I mean, nobody knows about COVID They're just learning," she said.
But to Fennimore's delight, the treatment worked. After two months she was able to walk without her oxygen during the day, in time for a family trip, and within six months Fennimore was able to reclaim her life.
"Amazingly, I am a little bit better than I was pre-COVID," she said.
The long game
In January, Gordon discharged Fennimore, making her the first person to graduate from the clinic, according to AdventHealth. She was met with raucous applause from the staff as she walked out of the building.
Fenimore’s improvement is seen as a sign of progress for the scientific community looking for answers about long COVID. Still, Dr. Herman Gaztambide, director of respiratory therapy at Orlando Health, said there is still much to learn.
Gaztambide, a full-time attendee in the department of pulmonary and critical care, said patients seeking help with long COVID symptoms are the third most common complaint he receives at Orlando Health. He refers them to a similar program of pulmonary rehabilitation, which he calls a "gym for your lungs."
Usually, with pulmonary patients, he prescribes inhaler therapies for patients suffering from COPD, but that doesn't seem to work on long haulers, Gaztambide said.
"What I see with my two eyes is my patient with the post-COVID syndrome do not respond to the normal inhaler therapy and the (gym for your lungs) has been effective but again, a very different from my usual approach," he said. 'It's not something medication can fix, but what rehabilitation can fix."
The program lasts about three months. After, he has patients return for follow-up assessments to see if there's anything he and his team are missing and to see if there is more to learn.
"At the end of the day, we still don't know why patients with post-COVID still have it. Is this something autoimmune? Is the virus still shedding? So for us, it's still a work in progress but with that comes the hope of therapy and potential fixing," Gaztambide said.
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