Over the last three years, Lou Dye has gone to several different specialists and tried a variety of coping mechanisms to manage her fatigue, brain fog, and respiratory issues. She had heard of post-COVID syndrome but wasn’t sure if that was what she was experiencing.
“I knew I had these symptoms, but I didn’t know how much of it was actually because of my COVID or if it was just a normal part of aging,” Lou said.
Lou first contracted COVID early on in 2020. After her initial infection, her respiratory symptoms continued for another two months, sending her to an emergency room in Florida. The hospital recommended she see a pulmonologist when she returned to Omaha. She counts herself lucky because she was able to come back home. She knew several people who contracted COVID and had to be on a ventilator or passed away because of it.
After she returned home, she noticed a considerable difference in her breathing and her energy levels. The normally active woman who walked several miles a day began to sleep up to 12 hours a night and still needed a two-hour nap to make it through each day. She was battling brain fog and memory challenges. Her primary care provider directed her to a pulmonologist to try and diagnose what she was experiencing. The pulmonologist prescribed an inhaler, which she said helped a little, but her cough continued and her fatigue and brain fog worsened.
“It was frustrating, and it just wouldn’t go away,” she said. “After a while, I thought, ‘This is never going to get better. This is just how I am now.’”
Despite having both initial vaccines and a booster shot, Lou once again contracted COVID in the fall of 2023. This time, a friend told her about Madonna Rehabilitation Hospitals’ post-COVID clinic. She was surprised that her doctor never mentioned the program or suggested that she might be one of the thousands of Nebraskans who experience serious activity limitations as a result of the disease. When she asked him to write orders for therapy, he hesitated.
“I ended up asking the pulmonologist to write the orders for me instead, and thankfully he did,” Lou said.
Lou started therapy through Madonna’s post-COVID clinic right before Christmas. She says the timing couldn’t have been better.
“At the time, my son and his family were coming to stay with us for three weeks, and I was worried I would just be too tired to really host or participate,” she said. “But actually, this held me accountable. I was able to go home and actively practice what I learned in therapy. That’s really when I felt like I started to see a difference.”
Occupational therapist Erin Connelly remembers when she first met Lou. Connelly says Lou seemed hesitant and didn’t believe she would ever get better.
“She was not very hopeful with seeing progress when she started our program, but she remained compliant with recommended strategies, exercises, and home programming anyway,” Connelly said. “That buy-in really made a difference in her recovery.”
Lou said she instantly felt comfort as her care team assured her that her symptoms were not made up or just in her head.
“I felt validated when they said, ‘This isn’t your imagination,’” Lou said. “They were also realistic with me and said symptoms may never fully go away, but they gave me tools to manage everything and that made a huge difference.”
Over two months, Lou spent hours in physical, occupational and speech therapies at Madonna, learning to retrain her body’s autonomic nervous system and strategies for coping with the ups and downs of living with a chronic disease. In physical therapy, she worked on monitoring her heart rate while gradually increasing her exercise tolerance and endurance. Occupational therapy sessions focused heavily on energy conservation. One thing that resonated with her was the Disability Spoon Theory, thinking of the energy it takes for someone with long COVID to do everyday tasks as spoons.
“You only have so many spoons of energy to get you through the day, so for every big task, you take away a spoon until you run out for the day, or you have to try and save up your spoons if you know you have something big to tackle later in the day,” Dye said.
Lou said if she ever started to feel discouraged, it would be time for therapy again, and she’d leave her session feeling re-energized.
“It’s great that I came weekly because if I got frustrated during the week, as soon as I knew it, it would be therapy day again and I could talk with my therapists about what I was dealing with and what had me frustrated,” she said. “We were able to work through my difficulties in real time and I could take those back and apply them the next week. They were also so encouraging throughout the whole process.”
In just a few weeks, Lou saw her symptoms drastically improve. She could resume her busy life, leading a bible study and walking three miles each day. She says she feels more energized and no longer needs to nap to make it through the day.
“This program and these people changed my life,” she said. “I want to make sure and spread the word as much as I can because I know there are other people like me who are struggling, and they don’t have to live that way.”