Nearly five years after the first confirmed COVID-19 infections in the United States, hundreds of thousands of people continue to struggle with the lasting impacts of long COVID. One Iowa woman says she was, and still is, more than willing to cross state lines to get the help she needs. An hour and a half drive from Sioux City to Madonna Rehabilitation Hospitals’ Omaha Campus is a small sacrifice to receive the leading-edge care and resources she says have made a huge difference in her quality of life.
Erin Webber-Dreeszen was among the first people impacted by COVID-19 in 2020. She had been in contact with someone who was in China right before news broke of the new disease, and she started experiencing her first symptoms in mid-February.
“I had never been so sick in my life,” she said. “I distinctly remember feeling so bad that I thought I might die, and not having enough energy to care about it.”
She navigated high fevers, headaches, muscle and joint pain, fatigue, delirium, and what she describes as “a horrible, wracking cough that resulted in pulled muscles in my whole torso.” Then came low oxygen levels, and her hair began falling out.
“One by one, each major body system started to have issues,” Erin said. “The last to be affected was my vascular system.”
Because she never had a positive test, Erin says she flew under the radar for a long time.
“No one in Iowa was testing for COVID-19 in February 2020,” she said. “I did not have a positive test in my medical record, so as I was being evaluated and treated at Mayo Clinic in August of that year, my symptoms were treated separately rather than viewed as part of one central issue.”
Erin says a breakthrough happened when her new cardiologist put it together in March 2023 after a blood pressure crisis that sent her to the emergency room.
“I had been struggling for three years by then and was barely hanging on,” Erin said. “My career had become next-to-impossible to manage, with new symptoms or system issues coming out of the woodwork every few months.”
In April 2023, Erin was diagnosed with cognitive decline and expressive aphasia. A colleague had heard of getting an evaluation at Nebraska Medicine, and then being referred to Madonna’s outpatient long COVID clinic. They had gone through the program with beneficial results and new coping techniques. Erin called right away and began the program.
“I was frightened that if I didn’t do something more aggressively proactive for myself, I was going to lose even more ground,” she said. “My body has been irreparably affected, but I needed to find some workarounds so I didn’t lose more cognitive abilities. The insights I gained from just my first few visits at Madonna were so helpful.”
It’s an hour and 45 minutes for Erin to travel to Madonna’s Omaha Campus from her home in Sioux City, and she made that trip multiple times a week for four months, but she says it’s worth it.
“It’s an investment in me,” she said. “The folks at Madonna listened to everything I had to say. They helped me feel like I wasn’t crazy and put me on a path so that I could start healing. I have the tools in my toolbox now, and the confidence that I can affect some of the things that were happening to me.”
With help from Dr. Samuel Bierner, the medical director of acute rehabilitation at Madonna, who sees patients in Madonna’s Physicians Clinic, Erin said her pain management was better and therapies taught her coping skills to help with cognitive challenges and energy conservation.
“At first, some of the physical therapy exacerbated my symptoms, but my therapists helped me modify the activities so I could continue moving forward. Mostly, I think the biggest gift Madonna’s post-COVID clinic gave me was the people who understood and encouraged me. I owe Erin Connelly, my occupational therapist, Jake Massey, my physical therapist, and Megan Phy, my speech therapist, so much. It’s a debt I can never repay.”
Bierner says in the three years since the long COVID clinic opened, he’s seen patients with a wide range of symptoms. Many, like Erin, have fatigue, difficulty with their memory and difficulty breathing. He’s also seen people who have problems with executive function—the ability to reason or perform work duties.
“As larger cities gain more experience with post-COVID patients especially, people are willing to travel to see doctors and therapists who have experience treating it,” Bierner said.
For Erin, it has been nearly five years of managing symptoms with medications and therapies. She says it’s been difficult to live with chronic illness because she may look like her normal self, but she is not who she used to be. She’s just learning to navigate her diagnosis better. Some days are better than others, but she will likely deal with it for the rest of her life.
“Long COVID is just, as far as research is concerned, it’s in its infancy,” Erin said. “We have no idea what this looks like long-term. I don’t know what my life is going to look like in 20 years. I don’t know what my abilities are going to be. But I do know that Madonna taught me things so that I can get through it.”
Bierner says because long COVID research is so new, there aren’t many resources for these patients in the Midwest, but Madonna is committed to staying at the forefront and filling that need. Over the last three years, he’s seen a steady stream of people looking for answers.
“Madonna has always been involved in the community and engaging with problems that affect people in this region, and certainly post-COVID is no exception to that,” Bierner said. “We are a leader in rehabilitation of all types of neurological problems. Post-COVID syndrome involves parts of the central nervous system, so we are trying to be leaders in the treatment and finding ways to improve people’s lives.”
Bierner says the landscape of long COVID care is always evolving. Recently, the U.S. government offered a broader definition of what post-COVID syndrome is, which opens the door for new treatments of symptoms, including therapy, exercise and medications.
Erin says like so many others dealing with long COVID, she’s been looking for a magic pill or quick cure, and while that doesn’t exist yet, she feels better equipped to navigate her symptoms.
“I think it is really important to recognize that the program does not cure long COVID,” she said. “Rather, it gives an experience of understanding and teaches tools one may use to thrive in spite of the condition. It’s a stop-gap measure until we all understand long COVID better, and it is wonderfully therapeutic.”
If you think you might be experiencing long COVID symptoms, take Madonna’s symptom self-assessment here. For more information on the long-COVID clinic and other resources, please click here.