PORTLAND, Ore. — COVID-19 long-haulers in Oregon are finally getting some help.
Earlier this month we told you about a new clinic starting in Portland, trying to treat people with Long COVID. Oregon Health & Science University (OHSU) officially launched the program and started seeing patients virtually and in-person last week.
Devyn Lugo believes she caught the coronavirus in February 2020 at a concert, before we even knew what it was.
"Since then I’ve had non-stop night sweats, brain fog, fatigue. For a while I had insomnia - I sleep OK now. The brain fog is life-changing though," Lugo said. "I'm tired all the time. I had a lot of hobbies. I used to knit a lot but now I just fall asleep."
"It's just ruined my life," she said through tears.
Lugo searched everywhere for help, but feels gaslit by a number of doctors, in part because her test results, blood work and X-rays all came back normal.
The 33-year-old with underlying conditions, including asthma, said no one believed her until she got a positive antibody test.
"There are people like me who are just out and about doing our best to get through this with no help," Lugo told KGW. "I just have been sitting in my apartment just, like, feeling crazy for a year."
That is, until someone in a Facebook group told her OHSU was starting a specialized program to help long-haulers like her.
"There are still many questions we're looking for answers to. Despite that I think that we can offer many things to patients to accelerate their healing and get better," said OHSU Long COVID-19 Program Lead Physician Dr. Eric Herman. "And make them feel reassured and sort of appreciated, because it has been a frustrating experience for many patients."
OHSU's program is one of dozens opening around the country to help people struggling with lingering, life-changing COVID symptoms.
From his experience, and in talking to other clinics around the country, Dr. Herman expects at least 10% of COVID survivors need this type of program.
OHSU just started seeing patients last week from their waitlist, which was already about 100 people deep. They anticipate many more will reach out.
Only OHSU patients can get into the program for now. They call a hotline and get screened by a nurse, or their primary care provider refers them. That hotline number is: 833-OHSU-222 (833-647-8222).
Dr. Herman says they eventually want to open the program up to people across the state.
"We go through kind of a head-to-toe discussion of what they may be experiencing to better understand what would be the right plan of care for them," Herman said. "Depending their symptoms, we would order other studies or make referrals to other specialists for more continued management."
The Long COVID-19 Program involves multiple specialists from across the system taking a coordinated approach to care for these people.
Once Lugo became an OHSU patient, she was referred to the program, which set her up with multiple tests and a neurologist. In addition, she saw a rheumatologist and her COVID team is working with her pulmonologist.
"Things are finally starting to get moving. I’m really nervous but also excited," Lugo said. "I feel like people are paying attention and want me to feel better!"
"There may be some people that take longer to recover and some issues that are affected long term but for the most part we are hopeful people will return back to the quality of life they enjoyed before COVID," Dr. Herman added.
Lugo doesn't know if she'll ever fully heal, but feeling heard helps in that journey.
"It's just the supportive care and validation that really gets me - in a good way!" she said. "Just having that validation changes everything, it changes my outlook."