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Leigh Craigmyle felt like her doctors weren’t listening to her.
The 40-year-old Austin resident had recovered from initial symptoms of COVID-19, including fever, congestion, and cough, since her May diagnosis but was experiencing some new and lingering issues.
Brain fog, memory loss, hair loss, persistent headaches, insomnia, fatigue, and inflammation are among the persistent ailments Craigmyle now wrestles with on a regular basis – all which she never experienced before contracting COVID-19.
“Most doctors have said that you get the virus and you eventually get better, but it just wasn’t the case for me,” Craigmyle said. “I have brain fog. I have seen a cardiologist and everyone wanted to say it was anxiety or it was all in my head.”
But when she returned to her job with the City of Austin following more than two weeks off, the muscle weakness was so great that she struggled to sit up at her desk. One day she collapsed and a co-worker called 911. She was taken by ambulance to a local hospital.
Medical professionals use the term “long hauler” for people who have been wrestling with serious COVID-19 symptoms for months after contracting the virus, said Dr. Monica Verduzco-Gutierrez, chair of the Department of Rehabilitative Medicine at UT Health San Antonio.
Gutierrez is leading a COVID-19 rehabilitation clinic, a partnership between University Health System and UT Health San Antonio, that treats patients from across South Texas who have lingering health issues following a COVID-19 diagnosis and post-hospitalization. It also connects them to specialists for treatment.
After weeks of suffering from persistent dizziness and fatigue following her hospital trip, Craigmyle found the clinic through a Facebook group dedicated to people sharing their stories about their COVID-19 diagnoses and long-term impacts of the disease.
She made an appointment the same day.
After a 45-minute telemedicine appointment, Craigmyle received validation for her concerns and referrals to local specialists who could help her with her lingering ailments.
“I think as women we are, like, kind of used to being not believed by doctors. So when I spoke about my symptoms, I was encouraged to go to [a clinic focused on] mental health, because the idea was that the stress was causing my throat and my headache to not be better,” Craigmyle said. “That was frustrating for me because I knew it was physical.”
Frustration is a common experience for people who have long-term COVID-19-related ailments, which is why Gutierrez thought it was important to begin looking into these patients through a lens that left room for answers to their medical concerns to evolve continually as doctors around the globe, including in San Antonio, reported more symptoms.
“The clinic is working to make sure people know that they can get their lifestyle and quality of life back with continued treatment,” Gutierrez said, which might include mental health treatment for signs of post-traumatic stress disorder, depression, or anxiety as a result of long-term hospitalization or isolation.
Other patients might require ongoing physical therapy. Bedridden hospital patients can lose 25 percent of their muscle mass within 10 days, Gutierrez said.
Since the first case of COVID-19 was reported to the World Health Organization on Jan. 3, medical experts from across the globe agree that they have been catching up from behind when it comes to diagnosis and treatment.
“A lot more information is going to keep coming out about COVID-19 and its impact in the next several months and years,” said Chara Rodriguez, physical therapist and professor at the University of the Incarnate Word who works with patients experiencing vertigo, dizziness, and balance issues after a COVID-19 diagnosis. “The novelty of this has been very interesting in how it just has affected so many more systems than just respiratory like the medical community originally thought.”
More than a third of COVID-19 patients are not back to their usual health up to three weeks after their diagnosis, a July report from the Centers for Disease Control and Prevention found.
“COVID-19 can result in prolonged illness even among persons with milder outpatient illness, including young adults,” the report stated.
The CDC report is based on telephone surveys of 274 COVID-19 patients. Ninety-five of those patients, or 35 percent, said they “had not returned to their usual state of health” when they were surveyed, which was at least two to three weeks after their first coronavirus test. Among the lingering symptoms reported were fatigue and cough.
Many with long-term symptoms were otherwise young and healthy. Among those surveyed between ages 18 and 34, about 20 percent experienced ongoing symptoms.
Jessie, a 35-year-old San Antonio resident who declined to use her last name due to the stigma surrounding COVID-19, said she experiences consistent fatigue and a lingering cough since contracting COVID-19 in early June.
“I will be fine and all of a sudden I will need to sit down and rest for long periods of time. … It just takes over so quickly and there is nothing I can do about it,” she said.
The vestibular system – responsible for providing the brain with information about motion and spatial orientation – is very susceptible to viral problems, Rodriguez said, and it is becoming more apparent that it’s being affected by COVID-19. “When people have problems with that system, vertigo, dizziness, being off-balance, falling, and a lot of fatigue are very common.”
Some people are fatigued for months after leaving the hospital “weak as a kitten from being bedridden,” Rodriguez said, and a big challenge in treating these patients is the lack of data and how that affects our understanding of the virus.
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Tiffany Jones-Smith, CEO of the Texas Kidney Foundation, said research shows many people who contract COVID-19 end up with some form of kidney disease, kidney failure, or acute kidney injury. People whose immune systems are compromised from COVID-19 have a higher likelihood of experiencing kidney issues later on, especially if they have Type 2 diabetes or are overweight, Jones-Smith said.
“COVID-19 patients that have passed away are showing severe kidney damage and kidney disease in their autopsy reports,” Jones-Smith said. “And many who recover from the virus are turning up with kidney failure and complications. But, unfortunately, few know about it, so they don’t pursue follow-up screenings and testing for their kidneys as they should be.”
A recent study published by the medical journal Kidney International found that among patients hospitalized for COVID-19, 36 percent (1,993) of the more than 5,400 people involved in the study developed acute kidney injury, causing a buildup of waste products in the blood, making it difficult for the kidneys to balance fluids in the body.
The Texas Kidney Foundation is tracking kidney damage and disease in COVID-19 patients statewide by offering free kidney screenings to anyone who has contracted the virus.
“Your best option if you’ve survived COVID-19 is to have your kidneys checked to make sure your kidneys haven’t been impacted,” Jones-Smith said.
Gutierrez said treating the disease’s lingering effects is particularly important for Bexar County’s Hispanic community, which is being disproportionately affected by COVID-19, accounting for more than 75 percent of cases.
“It’s important for underserved populations to know that the lingering impacts are treatable,” she said.