45-year-old Kari Lentino of Rensselaer, Indiana says she'd never leave the house again if she didn't have to, thanks to long COVID and her brain fog.
"I feel like a brain blizzard half the time," Lentino said.
A new study shows 1 in 20 COVID patients are like Lentino, suffering from long haul symptoms six to 18 months after their infection.
A University of Glasgow study of more than 100,000 people found breathlessness, palpitations, chest pain and "brain fog," were most common. 42% of those long haulers reported partial recovery.
Jeff Witmer still battles persistent symptoms. Fatigue and brain fog bother him the most.
"My wife and I can have a conversation in the morning — she could call me at noon — and there's some days I have no memory of the conversation that we had," he said.
Suzanne Martin has spent much of her last two years in doctor's offices.
"I mean, it's just crazy. I could be sitting there one minute and get up and go to the kitchen or something, and my heart would just start racing," she said.
Treatment and solutions are badly needed.
Dr. Igor Koralnik is chief of Neuro Infectious Diseases and co-director of the Northwestern Medicine Comprehensive COVID-19 Center, where he also runs a lab.
He says the majority of his long haul patients have seen their quality of life change on many different levels.
"People who should be working, they shouldn't have any major health problems, yet, they sometimes have persistent brain fog or headache or fatigue that prevents them to work or, you know, they need to work in the reduced capacity," Koralnik said.
Dr. Jim Jackson leads a support group at Vanderbilt, connecting patients who suffer from long COVID. He says the wait list is about 50 long.
"They've started coming from all over the United States and really, even all over the world," he said. "We have a couple of people from the United Kingdom; We have people from Canada."
Jackson has started research for his patients — a video game.
It's a specific game from Akili Interactive. Last year, the Food and Drug Administration gave the company the first approval for a video game as a prescription therapy for ADHD.
Jackson prescribes 25 minutes a day, five days a week for eight weeks.
"Is it going to translate into you being able to do your taxes? Are you going to be able to be organized or are you going to be able to be driving? And when you stop the game, do all those benefits stop? And we'll see at the end of the day, if this works or not. If it does, I think it opens the door to a lot of possibilities," Jackson said. "Physical therapies. Speech. Speech therapy. Occupational. And even now, a psychologist to deal with the depression and anxiety."
Back in Rensselaer, Kari and Jim Lentino prepare her pills. She takes eight medications and two vitamins daily, plus a handful more as needed.
That's in addition to her therapies and memory aids, like calendars and Post-It notes. Those cues share spots in the Lentino home near the signs of Kari's former creative and vibrant self. Prescription bottles near her paintings are reminders near her Star Wars string art.
"It's frustrating and depressing. It takes so long to do anything," Lentino said.
In the spot where she used to stand to paint, brushes and acrylics wait patiently.
Kari is waiting too, like so many long haulers. It's a draining wait and the ultimate test of patience.
