“The thought of having to sit up was like climbing Mt. Everest”
Tennesseeans sick for months on end with long haul COVID
COVID-19 Nurses at Vanderbilt University Medical Center in protective gear, in 2020. (Photo: John Partipilo)
Lesa Schultz has been sick for about 17 months. One of the “first wavers,” Schultz got COVID-19 on a trip home from Los Angeles in March of 2020 before the first pandemic lockdowns began in Tennessee. Schultz, a self-employed consultant, joins many Tennesseeans in suffering from long COVID.
According to the World Health Organization, patients who recover from COVID-19 but still experience certain symptoms may have a “post-COVID condition” or “long COVID.” Vanderbilt assistant professor of medicine Dr. Sapna Kripalani says long COVID is defined by symptoms that persist six to eight weeks after a patient recovers from their initial illness. Kripalani listed dozens of symptoms that can affect people with long COVID, and Schultz and other long COVID patients in Tennessee suffer from many of them.
Schultz, who lives in Nashville, says on any given day she may be nearly completely disabled because of long COVID symptoms. The 39-year-old’s symptoms started with a sore throat and quickly escalated to intense chest pain, headaches and difficulty breathing. She slept sitting up several nights as it was the only comfortable position. But at the time doctors didn’t know how to help, and Schultz says she was told that as long as she could breathe she should avoid the hospital.
“It’s a terrifying feeling,” Schultz says. “No one knew how to help and I was the sickest I’d ever been.”
By June 2020, Schultz felt “mostly normal,” but in July 2020 began getting new symptoms unlike her initial illness. Chest pains, dizziness, body aches, stomach aches, tachycardia, nerve pain, brain fog, fatigue and other severe symptoms sent her back to the doctor. Schultz says her symptoms often mimic those of an immunocompromised person, and if she pushes herself too hard or works too much she’ll be bed-bound for days afterward. She began to realize she might have long COVID and joined a Tennessee-based Facebook group called COVID-19 Longhaulers to connect with others experiencing the same problems.
Among the group is 52-year-old Callie Sprague of Chattanooga. Sprague initially got sick with COVID-19 in November 2020 meaning both women were ill before the Delta variant hit the state. While she and her husband both got sick, he recovered more easily. Sprague had initial symptoms similar to Schultz’s and experienced a sore throat that escalated to chest congestion, fever, headaches and exhaustion.
“The thought of having to sit up was like climbing Mount Everest,” Sprague says.
Sprague says she was unconvinced she had long COVID because she thought it was a continuation of the same illness and that her symptoms were not COVID-related because they changed. She was five months into being sick before she realized what was going on, and took a two-page list of symptoms to her doctor. Now, although the mother and writer says she was previously active and vacationed or visited friends frequently and sang in her church choir, her heart rate will race above 100 beats per minute while standing up. She says it will increase to as high as 150 beats per minute—as if she were exercising—while she does daily chores like washing dishes.
Dr. Kripalani regularly sees patients at Vanderbilt’s special long COVID clinic and says it’s not unusual to see such varying combinations of symptoms that as Schultz says, “ebbs and flows.” Kripalani says perhaps the most long COVID symptom is brain fog, which both women described having, making memory recall and conversation difficult. Kripalani says in general, executive function is affected, so patients often struggle to make decisions and complete normal daily tasks.
Kripalani says long COVID doesn’t affect any gender more prevalently or more severely, but does say that it may be more common in younger people between 30 and 40 years old. It can affect even the healthiest, most active marathon runners as well.
“Unlike other conditions and even unlike the original COVID surge, which was most aggressive in older people, I’m not seeing as much long COVID in older people,” Kripalani says.
Kripalani says it’s also too early to know how the Delta variant will affect long COVID. Because long COVID diagnoses lag behind the initial surge, we may not know until further into autumn or winter whether the variant will produce more, or different, symptoms. She does say that for now, there is nothing to suggest patients in Tennessee differ from those around the country and the world who are dealing with long COVID. All the reports she sees show local patients consistently exhibit the same symptoms as others with long haul COVID patients.
For now, Schultz and Sprague are seeing experts who study long COVID and are paying out of their pocket. Schultz says she is seeing a specialist who is helping her with blood tests and had previously been doing acupuncture and other treatments to help her symptoms before the Delta variant made it unsafe. She puts treatments on her credit card and doesn’t want to think about how much it’s all costing. Meanwhile, she continues to work as much as she can to support herself.
“I don’t know what else to do,” Schultz says.
I wish (people) knew that there are different outcomes besides having the flu or dying. There are people like me who suffer for months on end. By the time this is all over I will have lost a year of my life.
– Don't forget to add author
Sprague says she’s taken treatments from Dr. Bruce Patterson and Dr. Ram Yogendra. Patterson founded COVID Long Haulers, and both medical professionals have lengthy resumes that include pathology, HIV/AIDS research and more. Sprague says the treatments are helpful, but she too is paying out of pocket because it isn’t covered by insurance.
Both Sprague and Schultz join Kripalani in urging Tennesseeans to get vaccinated so others don’t suffer the same long-term effects. Sprague and Shultz both got vaccinated as soon as they can and say they want other locals to know COVID-19 and long COVID doesn’t just affect people with comorbidities or those who are older or in bad health. It can affect anyone.
Kripalani estimates that between 10 and 30 percent of COVID-19 patients experience long COVID. As of August 28, the Tennessee Department of Health reported 48 deaths in the state in the previous 24 hours, as well as 7,635 new cases and a total of more than 1 million COVID-19 cases in the state since the beginning of the pandemic. If only 20 percent of those 7,635 new cases experienced long COVID, that would mean 1,527 Tennesseans of any age, race, economic status or health status could be sick for months and months on end—and that’s only in a single day.
“I wish they knew that there are different outcomes besides having the flu or dying,” Sprague says. “There are people like me who suffer for months on end. By the time this is all over I will have lost a year of my life.”
Schultz says she’s upset that more people aren’t talking about long COVID and knows that others in marginalized communities must be suffering even more. She says she can’t imagine how a child might cope with long COVID because she’s found it so difficult to explain her own complicated symptoms to doctors, and she encourages parents to protect their children from it. She wants people to know the consequences, and she wants everyone to get vaccinated.
“I’ve been sick for 17 months and I’ve been wanting to speak up about this the whole time,” Schultz says. “I wouldn’t wish this on anybody.”
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