A Kansas mother’s COVID infection led to Guillain-Barre syndrome. Now she uses a walker and has memory loss.

Brianna Childers
Topeka Capital-Journal
Erika Hundley stands with the help of a walker after talking about her battle with Guillain-Barre syndrome, which was triggered by her COVID-19 diagnosis in May 2020. Her mother, Kellie Hundley,  of Holton, has been instrumental in her recovery.

HOLTON — Erika Hundley was the mom who did everything. She attended all of her daughter's activities, the fan in the stands cheering loud.

She was the friend who doubled as a ball of energy, exuding so much vigor that her friends had to remind her to calm down.

All that changed in May 2020, when Hundley tested positive for COVID-19.

The virus made her sick at first, but a month later she was back on her feet. In June 2020, she told her mother, Kellie Hundley, she had kicked the virus.

On July 4, 2020, Erika and her daughter Shelbie, 13, were buying fireworks when she became sick and lightheaded.

A couple of weeks later, Kellie Hundley received a text message from Erika's fiancé that she wouldn't get out of bed because she was tired. He was taking her to the emergency room.

Doctors diagnosed her with tiredness and sent her home.

When Kellie Hundley went to see Erika in Kansas City the next day, she knew her daughter wasn't doing well.

Pointing to a calendar with dates of various doctor's appointments and therapy sessions, Erika Hundley notes the scribbled words are hers. Guillan-Barre syndrome has made her hands stiff and writing difficult.

"She was infatuated because they had taken blood out of her arm and she kept checking it," Kellie Hundley said. "One eye was looking at me and one eye was looking in the other direction."

Kellie Hundley brought Erika back to Holton and called the local Onaga hospital. The hospital transferred Erika to Stormont Vail Hospital, where doctors performed a spinal tap.

"Nobody knew what was wrong," Kellie Hundley said.

While at Stormont, Erika Hundley went deaf.

More:Inside a Stormont Vail ICU floor as COVID cases surge: Patients are younger, 80% are unvaccinated

Life dramatically changed by COVID-19

Doctors diagnosed Hundley with Guillain-Barre syndrome, a rare neurological disorder that can be triggered by an acute bacterial or viral infection. It is a syndrome Erika Hundley developed and may live with the rest of her life because of the novel coronavirus that causes COVID-19.

Hundley isn't alone. Some people who test positive for COVID-19 can develop long-haul symptoms.

According to the Centers for Disease Control and Prevention, 21% of those infected with COVID-19 experience symptoms five weeks post-COVID-19. About 14% of infected individuals experience symptoms 12 weeks post-infection.

Post-COVID-19 conditions affect everyone differently and range in severity. Some of the mildest forms of long-haul COVID-19 are headaches, a prolonged decrease of sense of smell and taste, brain fog and fatigue.

Erika Hundley talks about how active she was and her ability to recall past events before testing positive for COVID-19 and developing Guillain-Barre syndrome.

Hundley, 40, is no longer the mom and friend she was a year ago. She uses a walker and has short-term memory loss. She can walk herself to the bedroom but requires help when she needs to walk farther.

Erika Hundley's memory of her time in the hospital is gone. She only remembers what occurred before she got sick and since she began working with a physical therapist after returning home.

"I have a really good memory when it's not affected by whatever's happening right now," Erika Hundley said. "I could tell you way back what happened in fifth grade, but I can't remember however many months of this."

More:Stormont Vail Health to require its employees be vaccinated against COVID-19. Here's what that means.

She now has 80% hearing ability and suffers from headaches blurred vision and other eyesight problems. She has become anxious and paranoid, triggering seizures.

Trying to write and eat is a struggle because her hands are stiff.

Erika Hundley sees physical, occupational and speech therapists twice a week who are trying to restore her walking ability, strength and speech.

COVID-19 can lead to consequential damages to other systems

George Wright, Stormont Vail's vice president of primary care services, said there isn't a succinct definition for long-haul COVID-19. It is more of a description of what people are experiencing.

As is evident in Erika Hundley's case, there are cases in which people develop severe, long-term symptoms after testing positive for COVID-19.

Wright said many consequential damages to other systems can result after a COVID-19 infection.

"There are thrombotic disorders, like blood clots that develop, strokes that develop," Wright said. "Folks that have kidney damage, folks that have lung damage associated with COVID, all those things result in longstanding consequences."

Melissa Mitchell, a registered nurse at Stormont Vail, peers in on a COVID-19 patient in the intensive care unit last month.

No rhyme or reason exists as to who develops long-term COVID-19 symptoms and illnesses related to a positive diagnosis.

"I think some people seem to have symptoms that persist longer and it's hard to predict who that will be," Wright said. "Those that tend to have an illness and chronic medical problems seem to be more prone to developing COVID. I think that probably these consequences ... are more likely to happen in folks who have other illnesses."

Time will allow for doctors and researchers to better understand long-term COVID-19 consequences, Wright said.

She stressed the importance of getting vaccinated and pointed out Shawnee County's low vaccination rate. As of Aug. 25, according to the Shawnee County Health Department, 48% of the county's population has received both doses of the COVID-19 vaccine.

According to Stormont Vail's Sept. 2 COVID-19 scorecard, 75% of positive cases were in unvaccinated people.

Stormont's Enhanced Primary Care program assists COVID-19 patients

Stormont Vail's stood up its Enhanced Primary Care program in November 2020.

The program identifies patients that are asymptomatic or pre-symptomatic, have a mild or moderate illness and manages them through care managers and specially-trained nurses who maintain daily contact with the patients.

Patients who test positive for the virus that causes COVID-19 and were at high risk for worsening symptoms were also identified.

"Those patients participated in that program through daily visits, by telephone and every couple days visits by telemedicine determined by their provider," Wright said.

More:COVID-19 hospitalizations are getting more expensive. Here's what you need to know.

The program has enrolled more than 1,200 patients. As of Sept. 2, there were 121 positive COVID-19 patients in the outpatient program.

Patients typically stay in the program 10 to 14 days after testing positive, Wright said, as that is the time period in which people are likely to develop severe respiratory illness and advanced respiratory distress syndrome.

"They are at highest risk for things like respiratory failure, intubation, renal failure," Wright said.

Diana Windle spent nine days at Newman Regional Hospital's ICU unit after testing positive for COVID-19 in February. She says her energy levels aren't what they used to be, and her damaged lungs make breathing more difficult.

'I'm still not normal'

Olpe resident Diana Windle is one of the many patients who benefited from Stormont's Enhanced Primary Care program.

Windle, 61, tested positive for COVID-19 in February and spent nine days in Newman Regional Hospital's ICU unit. Her symptoms were exhaustion, shortness of breath and fever.

She left the hospital with an oxygen machine in tow.

"(I was) very exhausted, very weak," Windle said. "I was lucky. I was not on a ventilator or respirator."

Windle's health following her COVID-19 diagnosis is abnormal. She was used to being active as she lives on a farm with her husband.

"Could I walk a mile? Probably, but would I be sucking air? Yeah," Windle said. "I was very active and got out and helped (my husband) move things around. I still do to a point but not like I used to."

An immune deficiency has kept Windle isolated and taking extra precautions throughout the course of the pandemic.

"I religiously wore my mask," Windle said. "I wore gloves on my hands to pump gas."

Windle is now off oxygen and made a slow return to work. But she isn't out of the woods.

"I still do not have the energy I used to," Windle said. "I'm still not normal."

Windle is experiencing hair loss, and her lungs are weaker and damaged.

More:'Children are catching the virus … and dying': Some Kansas schools mandating masks amid 21 COVID outbreaks

Windle credits Stormont Vail's Enhanced Primary Care Program with navigating her through the illness and return home.

"When you first come home, you're kind of lost. You don't know what direction it's going to take your body," Windle said.

She has been fully vaccinated and received her first booster dose a couple weeks ago. But Windle remains cautious about where she goes and who she comes in contact with.

As a grandmother, Windle wants to spend time with her grandchildren.

"If more people would get vaccinated, my life would go back to more normal," Windle said. "I wouldn't take the precautions that I do now."

Kellie Hundley tears up while talking about her daughter's year-plus battle with Guillain-Barre syndrome triggered by COVID-19.

Getting vaccinated is 'a small thing to ask'

Erika Hundley recently received both doses of the COVID-19 vaccine after receiving the OK from her doctor.

Her daily health problems could remain for the rest of her life. She said she is doing well if she can make it through therapy with her walker and cane.

"It's been helping," Erika Hundley said. "It's good just to be able to be in a monitored space so that you can use a cane or a walker and you don't feel like the other six people in the room are staring at you because you're doing the same thing."

Still, Kellie Hundley said, they take Erika's progress one day at a time.

"When she came home, she couldn't shower," Kellie Hundley said. "She can shower with a very small amount of assistance. We are doing things. I just know we can do a whole bunch more."

Kellie Hundley has been fighting to get her daughter into Madonna Rehabilitation Hospital in Lincoln, Neb.

"I just want her to have a chance to have the ability of all the latest equipment and those up there that know what's really going on," she said. "And not that they don't here. Again, it's just uncharted territory."

More:COVID killed 3.5 times as many Kansans in August 2021 than August 2020. Leaders renew calls to get vaccinated.

Erika Hundley also entered a free Stanford COVID-19 study that took place over Zoom. They diagnosed her with mild cognitive impairment.

"That's what they got just from talking to her," Kellie Hundley said. "I think it's probably a little bit higher than that, but it's nothing that she can't relearn. She has relearned so much."

Holton's Kellie Hundley, standing, has become an advocated for COVID-19 vaccination after seeing her daughter Erika Hundley's health struggles after developing COVID-19 in May 2020.

Kellie Hundley also is vaccinated. She has become a strong advocate for doing so.

"I just want people to come over and sit with (Erika) for a day," Kellie Hundley said. "It's not a joke. I understand it's everybody's choice, but it's a small thing to ask."

When sharing Erika Hundley's story in social media, Kellie Hundley said she's received positive and negative feedback.

"I don't want to preach to the choir. It's real, it is." Kellie Hundley said.

This past year, Erika Hundley said, has been a living hell.

"I used my body. I ran around. I did things — and just to have that basically taken away to where you can't even walk," Erika Hundley said.

Watching her daughter suffer and struggle with her health for more than a year has been hard, Kellie Hundley said.

"As a parent, the time will come where you will do whatever. It doesn't matter how old they are," Kellie Hundley said. "It's tough, and she has been to hell and back. Thank goodness she doesn't remember it."