Cindy Vanek was supposed to be recovering from COVID-19, but something was wrong.
The Papillion office coordinator contracted the virus just before Halloween 2020, a case she describes as mild-to-moderate — it knocked her out for several days but she never felt the need to go to the hospital.
But two weeks later, new symptoms started emerging. Her heart would start racing and wouldn’t stop. She felt dizzy. Nauseous. Constantly fatigued. Her whole body shook. Her fatigue prevented her from doing much more than working on the couch.
“It was kind of a mess,” she said. “Like all my systems were going haywire.”
Vanek, now 41, is one of millions of Americans who have or are now experiencing post-COVID symptoms, a phenomenon so common it has a name — Long COVID.
Studies suggest that between 10% and 40% of people who contract the virus experience some post-COVID symptoms.
The Long COVID Initiative estimates that 131,000 Nebraskans have experienced post-COVID symptoms, and that 43,500 have been disabled as a result. That group’s model puts the cost of the disease at $2.3 billion in Nebraska alone.
The Nebraska Medical Center opened a post-COVID clinic in March 2021. It’s already treated 250 patients.
“There’s not a lot that couldn’t be a symptom,” said Dr. Andy Vasey, who runs the clinic. “Post-COVID symptoms can be from the top of your head to the bottom of your feet and everything in between.”
Sometimes they are a nuisance. Sometimes they are debilitating, Vasey said.
Vasey often sees patients who experience heart or lung problems like chest pains and shortness of breath. Many times, a scan reveals no structural problems with those organs.
A new study suggests that some Long COVID is caused by nerve damage, though much is still unclear.
The good news, he said: “Nerves can relearn things and go back to functioning.”
Usually, symptoms get better on their own, he said.
In October 2020, Vanek was trying her best to avoid COVID-19.
“Health is something I value,” she said. “The idea of this virus just scared me.”
She worked from home, ordered groceries and double masked.
But she had an in-person part-time job, and that’s where she probably contracted it.
She tested positive on Oct. 15. COVID-19 itself was bad enough. She had a fever, cough, loss of taste and smell. But she got through it.
Then, two weeks later, on Halloween, she was sitting at a desk when her heart rate skyrocketed to more than 130 beats per minute. Doctors call this tachycardia, she later learned, when the heart beats too fast. She became dizzy, lightheaded and nauseous.
This was the beginning.
Over the next several months Vanek experienced similar episodes over and over.
“There’s this immediate, ‘something is wrong,’ and you can hear your heart racing,” she said. “I felt flushed and sweaty and super dizzy and super nauseous. I felt so wrong, I couldn’t do anything.”
Sometimes she recovered in half an hour; other times she was out of commission for hours.
From October 2020 until early summer of 2021, a litany of physical symptoms made it difficult for her to function.
Her nausea peaked in January with bouts of serious vomiting. She lost 60 pounds by March.
Spells of lightheadedness and vertigo continue today.
Fatigue prevented her from doing much other than working on her computer while lying down. Even walking across her apartment to shower proved difficult.
Weakness came with the virus, and this later transitioned to weakness because her body was no longer conditioned.
She still finds herself short of breath sometimes after doing routine chores like washing dishes.
Her retinas were damaged by the virus. She now wears glasses for the first time.
Her sense of smell was affected. She would experience phantom smells, for example putting on lotion and smelling gasoline.
Some of her symptoms are mental, and those, too, disrupt her life.
Vanek’s anxiety spiked higher than she had ever before experienced.
She now gets noticeably more confused, experiencing what Long COVID patients describe as “brain fog.”
In April 2021, she received the COVID-19 vaccine. Doctors have reported that some patients improve after they’re vaccinated. Vanek did, although it’s impossible to attribute it directly to the vaccine.
She returned to work that summer, but used a combination of sick and vacation time to work four-day weeks. Even this wiped her out, and she would spend the three-day weekend recovering.
Now, as she approaches her second anniversary of contracting COVID, her capacity is still limited. Once a runner, she now celebrates a 30-minute walk. Cleaning her apartment used to require a morning of effort, but now she splits chores into smaller tasks over several days. She’s lost the energy to go out with friends, to kayak, to enjoy life the way that she used to.
Vanek has seen a host of doctors at Methodist Health System. They can treat her symptoms – she takes medicine for her tachycardia, and her heart rate has mostly returned to normal.
But, frustratingly, she doesn’t know when — or if — she’ll return to her previous abilities. No one knows the long-term prognosis for a disease that’s existed for two years.
“I’m just different than I was,” she said. “I feel like I’ve aged and slowed down.”
In the meantime, she’s learned to live with a new disability. She knows what activities might sap her energy. She makes choices: Can I afford to do this today, knowing I might not be able to function tomorrow?
She spends more time reading and watching television.
Dr. Kevin Reichmuth, a pulmonologist and critical care specialist who sees patients at Bryan Health and a private clinic in Lincoln, said it’s frustrating to not be able to provide answers to patients. There’s not a good way to predict the course of the symptoms or who will suffer them.
“What has been hard is, we don’t know what the evolution of that damage is going to be,” he said. “We hope it’s going to continue to heal.”
One firm recommendation: Get vaccinated, he said. Lowering the chance that you contract COVID lowers the possibility you will have post-COVID symptoms.
He called Long COVID “the pandemic after the pandemic” for its scope and severity.
“The hope is that we’ll have more answers and treatment…in the coming years,” he said.
Vanek has found company among people online who’ve experienced Long COVID. It’s comforting to know she’s not alone. And she compares notes with a former roommate who experienced post-COVID symptoms.
But she finds that many people haven’t heard of Long COVID, and some people seem to not believe her.
“There are people out there still very much affected by COVID and the pandemic who haven’t been able to move on because they’re dealing with challenges and maybe grief,” she said. “Have patience and compassion for people who didn’t bounce back.”
The Flatwater Free Press is an independent, nonprofit newsroom focused on investigations and enterprise reporting.