Shock to the system
Relearning how to walk, losing words, stuck in brain fog — this is what Lehigh Valley COVID-19 long-haulers are facing
Before Chelsea Cefalu contracted COVID19 in March, she frequently ran and practiced yoga.
The day before she was exposed to the coronavirus, she helped train her 15-year-old son Patrick Biason for his upcoming baseball season by running wind sprints with him.
When the 44-year-old Easton woman first contracted COVID-19, her symptoms weren’t severe and she only sought outpatient treatment. But two days after her quarantine period ended, she was hospitalized at St. Luke’s University Health Network’s Anderson campus for a blood clot in her lungs.
Things got worse. At the beginning of April, the formerly active Cefalu was unable to walk.
“I felt like I had no control over the left side of my body,” Cefalu said. “I just couldn’t walk. I could engage in forward motion, but it wasn’t what you would call walking. It was really disconcerting and it was scary.”
Cefalu has what is called post-acute sequelae of COVID-19, also known as COVID long-hauler syndrome or long COVID. She experiences lingering symptoms or aftereffects of the illness well after her body has overcome the coronavirus infection. Health officials say that while other viral infections have been known to cause long-lasting aftereffects, COVID-19 is unique because of how common this is.
Dr. Dennis McGorry Jr., St. Luke’s senior
regional medical director, said that up to 30% of the adults and children who contract COVID19 experience lingering symptoms, and though these effects are more common in people who have had severe COVID-19, even those with mild symptoms or who were asymptomatic can experience long-lasting ailments.
That’s why St. Luke’s launched a COVID-19 recovery clinic to help those patients. St. Luke’s clinic uses a multidisciplinary approach that gets patients whatever treatment is needed to overcome their long COVID.
McGorry said some patients ask for a COVID-19 specialist only to find out that none exist because of how new the disease is. Instead, both St. Luke’s and Lehigh Valley Health Network have doctors identify when patients have long COVID symptoms and then route patients to pulmonology, cardiology, physical therapy, neurology, neuromuscular rehab, neuro-cognitive rehab or other specialties as needed to treat their symptoms.
Through the St. Luke’s recovery clinic, Cefalu was referred to St. Luke’s Neurological Rehab Center. For nearly two months she has been going to the center in Bethlehem to relearn how to walk. She has had to relearn how to straighten her knees, turn up her toes, keep her backside aligned properly and swing her arms while she walks.
“I still don’t really swing my arms but we’re getting there,” Cefalu said.
Lingering health problems
Though COVID-19 is primarily characterized as a respiratory infection, McGorry said the coronavirus creates a significant inflammatory response throughout the body.
“We’ve seen people with kidney damage, we’ve seen worsening of diabetes, we’ve seen heart issues with what’s called a cardiomyopathy,” McGorry said.
Dr. Mark Knouse, chief of
LVHN’s division of infectious disease, said some lingering health problems long-haulers have may not be caused directly by the coronavirus infection but instead by their hospitalization. He said people can get neuromuscular diseases from being in the ICU. Being on a ventilator
long-term can also have negative effects on the body.
Cardiomyopathy, which is when the heart weakens and has trouble pumping blood, is a common symptom long-haulers experience, McGorry said. Other common symptoms are difficulty breathing, scarring of the lungs,
memory impairment, anxiety and depression.
Another common but maddening symptom long-haulers face is a mild cognitive impairment that physicians and researchers are calling “brain fog,” McGorry added. People experiencing brain fog may have problems with planning, time management, memory and decision making. Some get lost midsentence.
Besides losing the ability the walk, Cefalu has other aftereffects. She developed anemia and heart arrhythmia. She also has persistent numbness in her limbs, frequently runs out of breath and experiences mild brain fog.
“I do tend to lose my words — my kids get impatient waiting for me, and they’ll fill in my sentence,” Cefalu said.
For a time after she was discharged from the hospital, she also had persistent pain throughout her body. After she received the COVID-19 vaccine April 25 the pain dissipated, she said.
Maria Morales de Andujar, another COVID-19 long-hauler, has been receiving treatment for mobility and breathing problems for the past year. Morales de Andujar, whose first language is Spanish, shared her story through her interpreter, her daughter Lemy Villanueva Morales.
Morales de Andujar, 71, of Allentown, and other members of her family contracted COVID19 in April 2020. While sick, Morales de Andujar developed pneumonia and an irregular heartbeat and was hospitalized at St. Luke’s Sacred Heart campus before being moved to St. Luke’s Allentown campus. During her hospitalization, Morales de Andujar also developed breathing issues and spent weeks in intensive care on a ventilator. She was hospitalized for almost three months, her daughter said.
“Everyone in the house was affected but my mom got the worst of it, she never used oxygen before, she only suffered from high blood pressure, nothing else,” Villanueva Morales said. “But the COVID caused injuries to her lungs. She had to learn to walk again and start from scratch.”
When Morales de Andujar got out of the hospital she had difficulty walking and needed an oxygen tank and steroids to help her breathe.
“We’d have to use a wheelchair. She couldn’t do anything because she’d feel like her oxygen dropped,” Villanueva Morales said.
Although the symptoms that long-haulers face can be frustrating, McGorry said the good news is that nearly all the health problems these patients experience are either treatable or will get better over time.
Morales de Andujar started physical therapy to help her walk again but faced some setbacks in the treatment of her breathing problems. On two separate occasions, doctors tried to reduce her steroid dosage, but each time she needed to be hospitalized for breathing difficulties.
But Villanueva Morales said her mother’s health has improved over the last year — she still needs an oxygen tank and takes steroids to help her breathe but she is walking again and feeling better.
“She is really happy. To see my mom go through everything — it’s a miracle that she is right here. This is really a miracle,” Villanueva Morales said. “When I saw my mom the first time in the hospital they told me, ‘We don’t know how long it’s going to affect her — maybe she gets better, maybe not.’ They weren’t sure.”
Cefalu said the process of learning how to walk again has been daunting but the medical specialists she has been working with have helped her.
“With concentration, I can actually walk almost normally, I have a little bit of a limp on my left side when I’m not concentrating,” Cefalu said.
She added she has been told the blood clot will go away on its own in six months and the brain fog, as well as the heart arrhythmia, should go away within the next year. To deal with the brain fog, for now, she takes plenty of notes to remind her of things at work and at home. Cefalu is still getting treatment for her anemia and has more physical therapy to complete before she’ll be able to run like she used to.
But she is hopeful.
“It’s not insurmountable,” Cefalu said. “I know that there’s an end. This is not going to be the rest of my life.”