COVID-19 long haulers in Greater Lansing are still struggling over a year later
Jeannine Thelen’s bout with COVID-19 last spring nearly killed her. Sparrow Hospital’s first COVID-19 patient, she spent nearly two months there, suffering a stroke and sepsis before going home.
Nearly a year and a half after being discharged, Thelen is still suffering from long-term health issues.
She struggles with a loss of peripheral vision and feeling in her left index finger and thumb, a decrease in her ability to concentrate, and what Thelen describes as “a dyslexic-like” struggle when she tries to read words or numbers.
Thelen said she remembers looking at the digital clock on her kitchen stove and thinking, ‘What the heck is going on with that clock?’ She saw a semicolon followed by the numbers three and zero.
“It was 1:30,” Thelen said, “But I didn’t see the one.”
An optometrist recently suggested that occupational therapy might help, and Thelen intends to try it, but she hasn’t seen any improvement in her ability to concentrate.
“Finding words is terrible,” she said. “Just having conversations, you know, basic words. I have to really stop and think about it and try to visualize how it’s spelled. It’s a struggle.”
Thelen doesn’t think she’ll ever be able to say she’s completely recovered and she isn’t alone.
Anywhere from 30% to 60% of those who get COVID-19 will suffer from lingering or long-term health issues, said Dr. Peter Gulick, professor of medicine at MSU College of Osteopathic Medicine.
COVID-19 “long haulers” have reported an altered or decreased sense of smell or taste, varying degrees of fatigue, difficulty breathing, and struggles with “brain fog.”
The symptoms have been known to cause mental distress, Gulick said, because they can be life-changing. Previously active runners with long-haul symptoms have reported struggling for breath as they walk from one end of a room to another, he said.
They can also be life-threatening. Multisystem inflammatory syndrome in children, or MIS-C, is a rare and serious condition that occurs in kids who’ve had COVID-19. It can cause different body parts to become inflamed, including the heart, lungs, kidneys, brain, skin, eyes or gastrointestinal organs.
The State Journal checked back in with long-haulers who were interviewed in January about their symptoms. Ten months have passed. They say they are still struggling.
Still so many unknowns
Carolyn Hook, 60, still has trouble catching her breath nearly a year after health issues prompted her to see doctors. She tested positive for COVID-19 antibodies.
Hook still can’t walk far without stopping to rest and at her home in Leslie she sleeps with an oxygen machine at the foot of her bed.
Earlier this year, a pulmonologist increased the amount of oxygen she takes each night.
“I still don’t have a good lung capacity,” she said. “I’m also on an inhaler during the day too.”
Long-haulers come from every age group and demographic, Gulick said.
Researchers at the University of Michigan’s School of Public Health have been studying them since last year. Data they’ve collected suggest people with severe bouts of the virus are more likely to suffer long-haul symptoms.
But Gulick said treating long haulers remains challenging, and there is still no way to know how long their health issues will last.
What doctors know is that COVID-19 can cause “an overwhelming inflammatory response” in the body, said Rebecca Schein, a pediatric infectious disease doctor at MSU who treats MIS-C patients at Sparrow.
A person’s white blood cells send signals to other cells, telling them to create proteins called cytokines when they become ill. They’re designed to destroy a virus or tumor.
The resulting “cytokine storm” might cause aches or fever — symptoms of illnesses such as COVID-19 and influenza, Gulick said in January.
In “a vast number” of people with COVID-19 the storm doesn’t stop, Schein said.
“Essentially, what’s happening is that your body has the virus, your immune system gets triggered to fight off the virus, and it doesn’t turn off,” she said.
A person’s immune system can destroy normal tissue if it remains active after infection, according to Gulick, causing persistent inflammation that can affect the brain, heart, nervous system and lungs and cause long-term symptoms such as fatigue, confusion and trouble breathing.
“Sometimes it improves,” Gulick said. “Sometimes it doesn’t. There’s no guarantee.”
Some see improvement
Robert McCann considers himself more fortunate than many others suffering from long-haul issues.
In January, the Eagle Township resident, 44, was dealing with extreme fatigue, often struggling to get out of bed.
“I’m happy to say I’m doing better,” he said. “I’m certainly not back to 100% but really since this started there’ll be periods where I’m doing better, and then there will be down cycles, where I’m feeling the effects much more severely again. That holds true, but really, the good periods are better and the bad periods aren’t nearly as bad as they were a year ago.”
McCann has no prediction for the future but says he’s seen progress.
So too has Jennifer Grey, 43, who had COVID-19 in March of last year.
Grey was diagnosed with pulmonary fibrosis late last year, a disease caused by damaged or scarred lung tissue. Her doctor believes the coronavirus caused permanent damage.
She struggled with aching lungs and wheezing in January but Grey said her symptoms have improved since getting the vaccine in the spring.
“The first dose made me feel somewhat better,” she said. “By the second dose, I felt a lot better. I got back so much energy that I seriously thought something was wrong with me. The cold weather is making it harder again but nothing like it was.”
Grey is dealing with damage to her ovaries. She said her doctors believe it was caused by COVID-19 and could require her to have a hysterectomy.
To Grey, it feels like long-haul issues are being treated “as they come” by doctors.
“It’s a new disability that’s been caused, and no one’s really taking it seriously like that,” she said.
The lasting health issues that can follow COVID-19, both in children and adults, should provide strong motivation for people to get vaccinated against the virus, Schein said.
“If you get COVID once you’ve been vaccinated, you tend to have very mild symptoms, and therefore, you are unlikely to have significant complications,” she said.
“People need to realize it may not be over if you get COVID and recover,” Gulick said
Contact Rachel Greco at email@example.com. Follow her on Twitter @GrecoatLSJ .