Caroline contracted COVID-19 during lockdown in November 2020, and was the only one in her family of four to be infected. She didn’t have a bad time of it, which is why her world was up-ended four weeks later when she was hit with the now-well-known “cytokine storm,” in which an infection causes your immune system to saturate your blood with inflammatory proteins that can kill tissue and damage organs. Caroline recently sat down with Responsum’s Community Relations Director, Bridget Greinke, to talk about her symptoms, what treatments have worked, and what words of advice she has for fellow long-haulers.*

“Really scary, really lonely”

The onslaught of inflammation hit her like a ton of bricks, and “swelled me up from my brain to my lungs,” she says. She had to lie on the floor just to get her breath, “and that was really scary, really lonely.”

Caroline felt constant pressure, as well as intermittent pain, in her chest. By January 2021, she realized that something had permanently changed in her body. Frustratingly, even after multiple lung function tests and a visit with a cardiologist, all her results were normal, and her doctors were stymied. Then the tingles in her spine and neck began.

“Misery’s a great motivator,” she says, stating that desperation drove her to “obsessive” research about her condition. She began reading everything she could get her hands on, from news articles to academic journals, for some answers and reasons to hope. 

Finding information and community

Soon she found the Responsum for Long COVID app, and joined the community. There’s “lots of great information,” she says, crediting the app with informing her about the discovery of microclots that don’t appear on standard tests, along with a research study at UNMC that she has since enrolled in.

Sharing in the community has been helpful, as well. “It’s a real downer to your inner circle,” she says, and there’s “not a high tolerance in general” among people when it comes to listening to others complain of their aches, pains, and medical issues. According to Caroline, “the community’s been great, even just to validate” her symptoms and suffering.

“Terrifying symptoms”

She’s tried to stay positive throughout her ordeal, she says, but admits that she’s experienced “terrifying symptoms every couple of months.” The entire first year she was “drowning in phlegm,” then she found out she had elevated liver enzymes, and CO2 that was 10 points higher than before her COVID-19 infection. 

The research study has also already run several free tests on her, including cardiac ultrasound and an EKG, and soon she’ll be heading to Mayo for a brain and spine MRI. Caroline says she likes feeling better-informed. While getting the results can be frightening, she’d “rather have the information…to take action” than not know what’s happening to her body.

What’s worked for her

Fortunately, it’s not all bad news. Despite the damage she’s sustained, she’s also experienced some improvement. The chest pressure and fatigue now come and go, she says, and she’s “definitely better” than she was a year ago. What’s contributed to her improvement? 

“I have become a huge advocate for Eastern approaches,” she tells Responsum. “They have millennia of knowledge that I don’t think the Western medical world has caught on to.”

Her healing regimen has included acupuncture twice a week, t’ai chi, yoga, reiki and other energy work, and an herbal tea whose main ingredient she found while researching Traditional Chinese Medicine. She felt encouraged when she learned that China did not appear to be experiencing the same Long COVID issues that we face in the U.S.

Words of wisdom

Caroline has found some hope since the beginning of her journey, and she urges others to keep seeking solutions. She wants them to know that they’re not alone, and they haven’t been abandoned by the research and medical communities.

These things take time, she says. “I don’t look to doctors to have all the answers. We can’t expect them to be the experts on something that is new to the world.” At the same time, she maintains the importance of finding doctors who are willing to listen and think outside the box.

For herself, Caroline continues to explore and take advantage of the benefits of both Western and Eastern approaches to her condition, and she keeps her spirits up by telling herself that whatever happens is part of her healing journey. 

“You just have to keep self-advocating and empowering yourself with information,” she says, adding that her family is also a big part of what keeps her going. “I plan to be around for grandchildren.”