Long-COVID Clinics Are Struggling With How To Treat Their Patients
(CTN News) – Although he was on a ventilator for more than three months because of Long-COVID, he has come a long way. He says he is almost back to normal now. We’re walking all over town now since I can walk to the mailbox.”
One of many patients suffering from Long-COVID symptoms, Rick, found a specialized clinic in his quest to recover.
More than 400 clinics nationwide have established their own programs, according to a crowdsourced project. The treatment protocol is not standard, and experts are casting a wide net for cures, but few are ready for formal clinical trials. Clinical practitioners are doing what they can to help their patients despite the lack of proven treatments.
At Ascension Saint Thomas in Nashville, Dr. Stephen Heyman, a pulmonologist who treats Lucas at Long-COVID-term clinic. He says that people like him are getting off their skis.
It’s been a bumpy ride to ‘almost normal’
The number of people suffering from symptoms of Long-COVID for a long time is unknown. It is often the definition of Long-COVID itself that varies greatly from study to study, which results in large variations in estimates. Still, even with more conservative estimates, millions of people are likely to have developed the condition after being infected.
COVID-19 can cause lingering symptoms that are more severe for some than the initial symptoms.
Some have had a rollercoaster of recovery, like Rick, who was on the verge of death. In addition to brain fog and fatigue, he was depressed. After getting his energy back, he tried some light yard work and ended up in the hospital with pneumonia. Long COVID was still a novel, mysterious condition, so it was not clear what ailments came from being on a ventilator for so long.
After getting home from the hospital, Rick says to Cinde Lucas, his primary caregiver, “I want to go to work four months later.”
She recalls saying, “I told you, you know what, just get up and move. No driving, and no walking. Just go in for an interview.”
It took Rick some time to get back to work.
Earlier this year, he resumed short-term work as a nursing home administrator, but he remains partially disabled.
Trying and failing
The medical community is tense over what appears to be a grab bag approach to COVID treatment. Researchers are more likely to support therapies before they are tried by clinicians.
The Cleveland Clinic’s Kristin Englund oversees more than 2,000 long-term patients, and says a bunch of one-patient experiments could cause confusion. It was her job to ensure that her team followed “evidence-based medicine.”
The more data we gather and evidence-based data we get, the better,” she says. “We need to try to develop some sort of protocol going forward.”
There is no lack of urgency on her part. Englund has also experienced long-term symptoms of COVID. Her health deteriorated for months after she became ill in 2020, and she spent her days sleeping on the floor of her office.
Her goal is to validate patients’ experience of their illness and offer them some hope through these long COVID clinics. Whenever possible, she sticks to proven treatments.
A patient with Long-COVID may develop POTS, which causes dizziness and heart racing when they stand up. In general, Englund knows how to treat those symptoms, but with other patients it’s more difficult.
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