Editor's note: This is the second in a three-part series about area COVID-19 long haulers. Watch for Part 3 in the FeAdrian's Jolene Wieneke is three months into her long haul with COVID-19.b. 17 edition of The Globe.
ADRIAN — After reading the story about Susanne Murphy’s experiences with the lingering effects of COVID-19 in the Feb. 3 edition of The Globe, Jolene Wieneke thought she was reading a story about herself.
The rural Adrian woman is also deemed a COVID long hauler, still battling fatigue and numerous other complications since being diagnosed with the virus last November. Now, she and Murphy are teaming up to offer a support group for local individuals facing the same lingering effects.
“Long-haul COVID patients need to know they aren’t alone and they need an advocate locally,” Wieneke said. “So, we will structure (Zoom, Facebook, etc.) the group based on response.”
Wieneke and her husband both contracted COVID-19 — him a few days before her. It’s suspected he contracted the virus while out and about with his work as a farmer.
“Of course you wear a mask and take precautions, but when you have family members that are out in the public, it does happen,” she said, noting that she and her husband and teenage daughter quarantined together until the day after Thanksgiving.
During quarantine, Wieneke experienced a low-grade fever, dizziness, fatigue and loss of taste and smell, but thought she was feeling better when she returned to her job at Citibank in Sioux Falls, South Dakota, after the holiday.
She worked five days with what she called mild fatigue, but by Sunday she began to feel like Round 2 of COVID had struck.
“I started having issues with my O2 stats,” Wieneke said, adding that she ended up with a prescription for steroids and an inhaler from her doctor, which helped. A week later, however, she began experiencing tachycardia (fast heart rate). Early one morning, her pulse was 165 beats per minute (a normal pulse is 60 to 100 beats per minute).
By the time Wieneke reached the emergency room, her pulse rate had settled back down, though it was obvious she was not feeling well. It was then that a nurse sat next to Wieneke on the bed and said, “This is an inflammatory response to the virus. That’s all we know — I’m sorry.”
Wieneke returned home and consulted with her general practitioner, which led to a meeting with a cardiologist, then a pulmonologist. She doesn’t have permanent heart or lung damage from COVID-19, but the tachycardia remains.
“The majority of long-haul patients aren’t hospitalized — they’re borderline,” Wieneke shared. “I’d say I’m 50% of where I was (pre-COVID).
“Although my general practitioner has been great, there’s just nothing there (for treatment) — no textbook they can go to. It’s just word of mouth.”
Wieneke still suffers from fatigue and brain fog, and while neither are a laughing matter, she has found humor in some of the strange things she’s chalked up to not thinking clearly. There was the recent day she drove Interstate 90 toward Sioux Falls, realizing as she reached Beaver Creek that she wasn’t wearing a coat.
Another day she caught herself signing checks with her maiden name. Also, if she’s watching TV, she has to turn the volume down just to be able to answer a text.
“It’s like there’s too much stimulus,” she said. “I can’t handle the multi-tasking.”
Brain fog ranks fourth on one list of the 50 most common symptoms for COVID-19 long haulers, and Wieneke said it can be very debilitating.
Some of her other lingering symptoms included on the list are insomnia, headaches, dizziness, blurred vision, neurological issues and tingling sensations.
Today, Wieneke is using supplements to address some of her lingering COVID-19 effects. They have helped quite a bit with the fatigue.
“I fully recovered from breast cancer three years ago, and I learned a lot about alternative medicine (then).” she said. “I was able to use essential oils for some of my symptoms. I’ve also used acupuncture.”
Through Facebook groups for COVID long haulers, Wieneke connects with people over similar experiences, shares treatments that work or don’t work and relates to other long haulers in ways those who don’t suffer may not understand.
“No long haulers know what their prognosis is because they’re the first ones,” she said. “You don’t know if you’re going to get better or when — everyone is different.
“What they’ve made clear is that your body is on its own timeline. You just don’t know when you’re going to heal,” she added. “If you push COVID, it pushes back. If you try to push through the fatigue, it pushes back twice as bad.”
Because of that, Wieneke takes life one day at a time — sometimes one hour at a time. Earlier this week, she traveled to the long haul rehab center at the Mayo Clinic in Rochester. She hopes the visit will provide some answers.
“The estimates are that 10% of people that get COVID become long haulers,” Wieneke shared. “If that’s true, that’s going to equate to hundreds of thousands of people in this country.”
Due to the lingering effects of COVID-19, Wieneke has been on short-term disability since December. She hopes to return to work later this month, depending on step-by-step instructions to do her work in Citibank’s fraud department.
“If it doesn’t work out, I can go back on disability,” she said. “I have a wonderful employer.”
Wieneke said the hardest part of being a long hauler is not knowing when her plight will be over.
“When I had breast cancer, I had a general idea what the process would be, how long I’d be sick, what the surgery would be,” she said. “With long-haul COVID, you just don’t know that — nobody knows that. Doctors don’t know what causes it. There’s no timeline of what happens next.”
Another aspect is the support. With breast cancer, Wieneke had 100% support from everyone. With the divisiveness surrounding COVID-19 — the mask mandates, stay-at-home orders and business impacts — and the invisibleness of some lingering symptoms, she says support for long haulers just isn’t there.
“There were so many times when I would have a good day or two days, then I’d start thinking I can celebrate, then something else would hit,” she said. “It’s so disappointing because I just want things to go back to normal.”
Wieneke is hopeful she’ll get some answers at the Mayo Clinic — perhaps even a goal.
“I’ll do whatever it takes to get better,” she said.
Anyone interested in joining the local long haulers group may contact Wieneke at (507) 227-3096 or Susanne Murphy at 360-6699.