Living With Long COVID: 2 Siouxland Women Share Their Struggles With Lingering Symptoms – Sioux City Journal

SIOUX CITY — When Barb Larimer washes, brushes or wrings the water out of her hair, a clump of the 50-year-old Sergeant Bluff woman’s golden blond locks falls out.

“It’s unnerving to see that handful of hair repeatedly throughout the day,” said Larimer, who has also experienced joint pain and fatigue weeks and months after being infected with the novel coronavirus in August. 

Long COVID-19 symptoms have run the gamut for Muriel Walker — gastrointestinal issues, rashes, blurred vision, heart palpations, brain fog, hair loss and persistent pain in her back, hip, rib and chest. These ailments and others began after the 62-year-old Sioux City woman contracted the virus in May 2020. 

“I was to the point where I could not even go down to the basement and do my laundry. I’d come up the stairs and I’d be wheezing. I’d bend over and tie my shoes and I’d just be wheezing. It was horrible,” she said.

As omicron, the latest COVID-19 variant, rapidly spreads around the globe, there is a risk that more individuals could experience this mysterious condition. 

While most people recover a few weeks after COVID-19 infection, others have symptoms that linger or return for weeks or months. Long COVID-19 can affect anyone who has had the virus, even if the illness was mild, or if they had no initial symptoms, according to the Centers for Disease Control and Prevention. 

A preprint paper released in December states that the coronavirus that causes COVID-19 can persist in the body for months.

National Institutes of Health scientists completed autopsies on 44 patients with COVID-19 to map and quantify the virus’ distribution, replication and cell-type specificity across the human body. According to the paper, which has not undergone peer review, persistent SARS-CoV-2 RNA was detected in multiple anatomic sites, including regions throughout the brain, for up to 230 days following symptom onset. 

Sara Karpuk, a physician assistant at MercyOne Siouxland Medical Center, said the more serious a case of COVID-19 is, the more likely that person is to experience persistent symptoms. 

“We just don’t have enough data and enough answers about long COVID yet,” she said. “Probably about the most definitive thing I can say is that vaccination decreases your risk of severe COVID. And, so, by decreasing your risk of severe COVID, you then decrease your risk of developing long COVID.”

FAIR Health, a national nonprofit, studied 1,959,982 patients for the prevalence of post-COVID conditions 30 days or more after their initial diagnosis. The study, which was published in June, found that 23% had at least one post-COVID condition. The five most common conditions across all ages, in order from most to least common, were pain, breathing difficulties, high cholesterol, malaise and fatigue, and high blood pressure. 

According to the study, 50% of patients hospitalized with COVID-19, 27% of patients who were symptomatic but not hospitalized, and 19% of patients who were asymptomatic had a post-COVID condition.

A number of patients with long COVID-19 are requiring inhalers or supplemental oxygen and attending pulmonary rehabilitation for chronic lung disease, according to Karpuk. She said others are seeing nephrologists to manage chronic kidney disease and going to cardiac specialists to manage myocarditis, an inflammation of the heart muscle, and cardiomyopathy, a disease of the heart muscle that makes it harder for the heart to pump blood to the rest of the body. 

Karpuk said long COVID-19 involving actual cell or organ injury is better understood than the lingering symptoms which are “more vague.”

“The other less specific things, like the fatigue, the hair loss, the weakness, the loss of appetite, the brain fog, those types of things are very difficult to treat because we don’t understand exactly why it’s happening,” she said. 

Lingering symptoms

The first time Walker came down with the virus, she was in the process of relocating to Whiting, Iowa, from Sioux City. She thought the pain in her back and rib cage was due to muscles she strained while moving, but it soon intensified and was accompanied by shortness of breath and chills. She went to her doctor’s office, where she was tested for the novel coronavirus. That test came back positive on May 17, 2020. 

“Immediately, it just went right to my lungs. I was just staying at home quarantining, and I just was having trouble breathing,” recalled Walker, who had no fever or cough.

Walker, a member of the Winnebago Tribe of Nebraska, visited UnityPoint Health — St. Luke’s and Twelve Clans Unity Hospital’s emergency departments before being admitted to Burgess Health Center in Onawa. She was hospitalized for over a week.

“I thought maybe it would take a month or two to recuperate, but everything just went bad from there. I still had the pains in my lungs, my chest and in my back,” she said. “My vision was getting blurred. I would get these rashes. My intestinal tract was all messed up. I still had the headaches that started in my jaw and would work way up to the side of my head. I had all of these symptoms for a whole year.” 

Larimer tested positive for the virus on Aug. 12, 2021, after experiencing congestion and fullness in her ears.

The results came as a surprise to Larimer, who had received the Pfizer-BioNTech COVID-19 vaccine in December 2020. Larimer, who manages MercyOne South Sioux City Family Medicine, was scheduled to go out of town with family the very next day. 

“I have faith in the vaccine, so I was worried about getting sick, but I wasn’t, at that time, overly worried about going on a ventilator. I didn’t expect to get as sick as I did,” she said.

Four days after testing positive, Larimer woke up with pronounced shortness of breath. She was taken by ambulance to MercyOne Siouxland Medical Center and admitted with pneumonia in both of her lungs. She was placed on oxygen, but never progressed to the level of needing a ventilator. When she returned home a week later, she was wracked by fatigue and void of strength in her legs.

“I got home and finally took a shower. I dropped something and bent down to pick it up. I thought, ‘This is how I’m going to die. I’m going to drown in the shower because I can’t stand up,'” she recalled. 

Larimer tried to return to work at the clinic roughly a week after being released from the hospital, but she was soon sent home.

“The fatigue is real. It’s just very real,” said Larimer, who resumed her normal work schedule the second week in September. “I didn’t feel like I was going to get my strength back unless I got out and made myself move.”

Karpuk recalled two patients who got sick with COVID-19 and were hospitalized at the same time. One, a man who was previously in good health, continues to require supplemental oxygen and has been unable to return work, while the woman has slowly recovered and recently returned to work.

“I don’t have a good explanation for why he’s doing so poorly versus why she’s doing so well when they were treated at the same hospital with the same therapies by the same (primary care physician). It’s just the way each unique body responds to the virus,” Karpuk said.

Getting vaccinated, masking up and handwashing are the best ways to prevent the transmission of the virus in the community and lessen the risk of developing long COVID-19, according to Karpuk. 

“People need to be aware that surviving COVID is not the entire battle,” she said. “We need to, as a community, do everything we can to prevent the transmission of COVID, so that we don’t have so many people in our community struggling with long COVID.”

‘Real scary’

As she battled long COVID-19, Walker had to quit her job as a postal carrier, which she had had for 13 years, and depend on her daughter Sasha to take care of her. 

“After COVID, my blood pressure went sky-high. I have sleep apnea now, so I have to be on a CPAP machine every night,” she said. “I was totally healthy before.”

Through a support group she joined on Facebook, Walker learned about the Post COVID-19 Clinic at the University of Iowa Hospitals & Clinics, which treats patients with long-term complications from the virus. She traveled to Iowa City in early April to undergo a battery of tests over a two-day period. Walker learned she has diastolic dysfunction, a cardiac condition caused by a “stiffening” of the heart’s ventricles, and minimal scarring on her lungs.

“Just a couple weeks ago, I had another lung scan done. I still have the scarring on my lungs. (The doctor) said it’s just going to take time to heal, but she doesn’t know if it ever will completely heal,” she said.

Walker was nervous about getting vaccinated, but the doctor in Iowa City urged her to do it as soon as she could. She received her first dose of Pfizer-BioNTech COVID-19 vaccine in mid-April and her second dose in early May. Around that time, she also changed her diet and began exercising again. Within a week or two after receiving the vaccine, she said her symptoms began to disappear.

Then, in July, as the relentless delta variant bore down on Siouxland, Walker was diagnosed with COVID-19 a second time. Labored breathing and chest tightness led her to seek treatment from MercyOne’s emergency department, but Walker managed to get through the infection without needing to be admitted to the hospital.

After receiving a COVID-19 booster in November, Walker said the long haul symptoms have started to “creep back.” The terrible headaches have returned, as have the GI issues, hair loss, fatigue and pain in various areas of her body.

“You just get so discouraged. You know something’s wrong with your body, but you’re not getting answers or any kind of hope. Am I going to be like this for the rest of my life?” Walker said. “It’s real scary.”