CLEVELAND — Right now, there is no clear cause or cure for long COVID, or Post-Acute Sequelae of SARS CoV-2 infection, known as PASC.
Depending on the study, some estimates are 30-40% of COVID-19 patients will experience at least one symptom a month after initial infection.
All three major hospital systems in Northeast Ohio have clinics dedicated to treating COVID long-haulers.
The reCOVer Clinic at Cleveland Clinic has been open a year now, and the push for answers isn’t slowing down, and neither is the patient population.
Doctor William Lago is the medical director at the reCOVer Clinic. He says they're seeing about 125 new patients a month.
"We had a large backlog to begin with," said Lago when they opened in February 2021. "Every time we thought it would slow down, COVID would raise its head, and we got more patients, and we anticipate that we're going to continue to grow."
He anticipates the clinic will be here for at least another year or two.
They are treating people like 35-year-old Hinda Stockstill.
"How long is this going to last? When am I going to get better? Am I going to get 100% better? Those are all the things that run through my mind every single day," she said.
Stockstill is a COVID-19 long-hauler. Life changed for Hinda in December 2020 when she contracted COVID-19 and went from a healthy 30-something with a future as bright as her smile to nearly bed-ridden with pain and despair.
"The symptoms never changed," she said. "It felt like every day I had COVID."
Her symptoms are head to toe. She's fighting tooth and nail and says healing finally began after months of suffering.
Her mother told her about the reCOVer Clinic opening at the Cleveland Clinic.
A graduate of the University of Dayton now living in Cincinnati, Hinda made the trip up to Cleveland. She said had she not found her way up to the reCOVer Clinic, "I think I would've lost my mind."
"A lot of the patients who come to us are frustrated," said Lago. "They feel like no one really understands what’s wrong with them.”
Lago said confirming to the patient that long COVID is real, their symptoms are real, and so is hope for healing is important.
"Our goal right now is trying to get people back to functioning, normal lives," he said.
"The main thing we focus on is trying to improve their symptoms," said Lago. "If we can improve somebody's symptoms to where they're less short of breath, to where they have enough energy to get up and take care of their kids or go to work every day, it makes a huge difference. And hearing that from patients, from a provider's standpoint, makes it worth it."
The most common symptoms they say are fatigue, brain fog, and shortness of breath.
"For me, I think some of the neurological symptoms are the most perplexing," said Brittany Baloun, clinical lead at the reCOVer Clinic.
She says 60-70% of the people they treat are women. Their largest patient population is people ages 40 to 50.
"Everybody's journey with this is unique; with the way they present, with the way that they heal and move forward," said Baloun.
Healing is happening, including for Stockstill.
"My improvement isn't a linear or a straight-line progression," she said. "I get better, and then I seem to regress. And then I improve even more."
Stockstill also found healing in online support groups where she said there's a tsunami of people and emotions.
"Anger, because some people who are long haulers feel they did everything right and they still got sick," said Stockstill. "Feeling misunderstood..."
She still has a list of health complications, but she'll keep fighting, and says she shares her story to encourage others to do the same, and for us all to have empathy for each other.
"I have a lot of fire," smiled Stockstill. "I have a lot of tenacity! I call myself a firecracker long-hauler because I don't give up."
Lago says it is not unheard of to see reactions from a viral infection, but the scale and scope we’re seeing with COVID is different.
He said they're not seeing anything yet specific to the different variants.
Baloun and Lago say they have long-haul patients who had a very mild, acute phase of initial infection all the way to people who had severe illness.
They also said that they have both unvaccinated and vaccinated patients. The CDC says the best way to prevent long COVID is to try and prevent getting COVID-19, and the best way to do that is with vaccination for those who are eligible.
To get into the reCOVer Clinic, you need to be referred by a Cleveland Clinic practitioner who identifies you meet the criteria of being at least a month out and having symptoms. They then run you through a series of questions and labs and tests, and come up with a game plan unique to you that pulls from 18 different specialists.
A lot of people don’t have a PCR test to prove they had COVID. Testing wasn’t widely available or accessible for a long time. They said don’t let that be a barrier to seeking care.
And Cleveland Clinic says health insurance companies do recognize the diagnosis of long COVID and cover as they do others. The Cleveland Clinic has programs to help cover medical costs for people without insurance and say patients can speak with a financial counselor before visiting the reCOVer Clinic to talk about this kind of help.
Baloun and Lago want people to know long COVID is a legitimate medical condition and to seek treatment.
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