‘This is how life is now’: Long haulers still experiencing the effects of COVID two years on
Two years ago in early March, Tyson Plastow contracted COVID-19 for the first time — just as the World Health Organization declared the coronavirus a pandemic.
In the months that followed, he constantly woke up at night gasping, desperate to fill his lungs with air.
“I just couldn't breathe,” he said. “I was coughing all the time. I hurt all over. I was having trouble thinking straight.”
These symptoms — now associated with “long-haul COVID” — were not well understood at the time. Today, Utah has two health clinics that serve these patient populations.
But back then, Plastow searched for medical help to ease his breathing and help the pain. He said he went to a pulmonologist who confirmed through a CT scan there was scarring on his lungs from the virus. It confirmed his suspicions about lingering side effects.
A few months later in December of 2020, he got COVID again. Plastow said he felt like he was slowly dying. He recalled feeling the scarring in his lungs from the first round of COVID each time he tried to breathe. Plastow drove himself to the emergency room where he said he was diagnosed with pneumonia and given oxygen.
Now, two years later, he said he’s not the same man anymore. Plastow said the quality of his life has changed. At night, he sleeps with an oxygen machine and manages his new diagnosis of fibromyalgia, a condition that causes chronic pain.
“I used to be really physically active, playing sports, exercising five times a week, if not more,” he said. “And now, I can barely walk around the park once without my heart racing.”
Plastow is still adjusting to his diagnosis; he goes to counseling to help cope with his new reality.
“[Doctors say] this is how life is now, and it's a matter of managing it. You're not going to get all the way better,” he said. “... I can't even describe what it's like. For the first time in my life, to think I can't do something. That was really rough, and it's still pretty tender to just think about.”
These long-haul symptoms vary from patient to patient, according to Dr. Jeanette Brown, pulmonologist and medical director of the University of Utah’s COVID-19 Long-Hauler Clinic.
“You can talk to one person and they have a completely different set of issues than the next person. You can't do a one size fits all approach,” Brown said.
She said some of the most common side effects are brain fog and heart, lung and sleeping problems. Since the U’s clinic opened in July 2021, she said about 70% of their patients have been women.
Brown said they are still learning a lot about the long-term effects as new research emerges.
A recent UK study found that even mild cases of COVID could change the brain and potentially speed up its aging.
She said one of the biggest takeaways from the last two years has been patient input.
“One of the key things we learned from this whole experience from the pandemic is it's important to listen to people,” Brown said. “That sounds very basic, but it's really important.”
Lisa O'Brien is founder of the Utah COVID-19 Long Haulers group. For months after she contracted COVID-19, she could not drive or stand in the shower and relied heavily on the help of her family. O’Brien said they had to fight to make doctors take these side effects seriously and consider them a consequence of the coronavirus.
She’s been working to bring more attention to the issue as it continues to impact people’s lives. Long COVID can be considered a disability under the Americans with Disabilities Act if it substantially limits one or more major life activities.
“The symptoms are debilitating to where people cannot live life like they once did. Some can't even do simple housework,” O’Brien said. “We're two years into this, we have people that have not been able to return to work. We've had people who have lost insurance because of that. We have people who have had to get different jobs that pay less or start working part-time. And most people, if they don't have any savings, it has run out and they need assistance.”