Running with cystic fibrosis
Wheeling resident focuses on what she loves, not disease
WHEELING — At one point in her life, April Thompson put what she loved the most on hold.
Others with cystic fibrosis might have given up, but not Thompson.
“My lung function started to decline when I got to high school,” she said. “Just a little bit, but it started to bother me. I didn’t know what was wrong, and I was too afraid to keep running because I was worried something would happen. So, I quit the relay team in high school.
“Then I just decided to keep doing it because I liked it. Now that I know what’s wrong, it’s better for me to do it anyway.”
The genetic disorder causes a thick, sticky buildup of mucus in the lungs, pancreas and other organs. Thompson’s mainly affects her lungs.
A graduate of Wheeling Park High School, Thompson never knew what was wrong until she was 25 years old. Everybody agreed something was wrong, but nobody figured out what — not even doctors and specialists in Wheeling.
In and out of hospitals often, Thompson never got better. Doctors kept pushing antibiotics that never worked. In fact, she is resistant and limited to many antibiotics.
“One mutation is normal, something that everybody has. My second mutation is not very common,” Thompson said. “When I was young, I was sick but didn’t have all the signs. A lot of people with cystic fibrosis cannot gain weight. They usually catch it right away with that. Or, at birth, children have problems with their bowel and require surgery. I didn’t have any of that.”
Doctors always told Thompson she had the signs but couldn’t possibly have cystic fibrosis. They tested for roughly 300 of the 1,800 different mutations, which are common in most.
When 2005 rolled around, Thompson couldn’t take it anymore. Something had to give.
“When I was 25, I got really sick, sicker than I’ve ever been in my life,” she said. “I went to a lung specialist. They put me on more antibiotics. Then he sent me to an infection specialist. He decides to do a bronchoscopy. It comes back that I have staph in my lungs. They said we need to treat this more aggressively. After eight weeks of antibiotics, I didn’t feel any better.
“They said, ‘You need two more weeks.’ I said, ‘No, I want a second opinion.’ My second opinion got me to Morgantown.”
Thompson visited an infection specialist. The doctor immediately honed in on what the problem could be after just one test. This time, it was a genetic test.
Thompson naturally panicked. Upon receiving her diagnosis, she began researching.
The average life span is 41 years old. Losing weight is common. Coughing and shortness of breath also come with the disease, though she always had those. Thompson questioned if she would ever be normal again.
“After I got my diagnosis, I had to get that out of my head,” she said. “I have to do what I need to do to be me. I can’t let it run my life. I try to have a life other than my cystic fibrosis.”
Along with her husband, Brian, and stepson, Danny, running is her life.
Thompson had a part of her lung cut out in 2011. Four years later, she heard about an event occurring in Boswell, Pa. That sounded like fun, so she began training again.
Two years after that, she got her first trifecta. As a member of the Steel City Spartans, trifecta tribes finish one of each Spartan distance (sprint, super and beast/ultra) in a calendar year.
Currently, Thompson competes in two double trifectas, a total of six races, per year. She also takes part in others, such as Tough Mudder and BoneFrog, but Spartan is her favorite. One of her recent races came a few months ago, a Spartan race originally scheduled in Wintersville. However, due to poor field conditions, it was relocated to Garrettsville.
As of August 2017, a new medication is giving Thompson more opportunities. It is called KALYDECO.
“It actually helps the underlining problem of cystic fibrosis,” she said. “After my lung surgery, my pulmonary function tests were like 52 percent. Sometimes I could get it to 58, which was my normal. After I started this medication, it went up to 73 percent.”
It also is the reason for her mohawk.
“When I started that (new medication), my hair started thinning,” she said. “Everyone that I talked to who is on this medication had the same problem. My hair was super thin to start with. One day, I began brushing my hair, and it began breaking off.
“I couldn’t hide it anymore, so I decided to take a No. 2 to it and shave it. Then I let it grow back to see if I could brush it again, but I couldn’t. I still can’t brush it to this day. I decided to start off the new year with a mohawk. I did it for myself, but everyone seems to like it.”
Along with KALYDECO and other medications, Thompson has what’s called the high-frequency chest wall oscillation or, simply, the vest. The machine performs chest therapy by vibrating at a high frequency. It helps loosen and thin mucus. Thompson does this twice a day, for 20 to 30 minutes each time.
All told, the medication and treatments has given Thompson an even greater love for what she does.
She runs for love and passion, not for money. That’s why she runs open heats during her Spartan races. Besides the love, there is something she’s hoping to achieve.
In early October, she won a Cystic Fibrosis Foundation Player of the Week honor. For her, hat was just the first step. Her name will be thrown into a hat with other winners of the award. At the end of November, Thompson may be lucky enough to win athlete of the year. She would be a guest of honor at a sports auction in Pittsburgh and will speak to members of the Steelers.
Although having to deal with cystic fibrosis and her desire to run, she found time to go back to West Virginia Northern Community College to get her associate’s degree. She graduated a few years ago, specializing in sign language interpreting.
Nothing’s impossible for Thompson. She does not allow cystic fibrosis to limit or contain her.
“I try not to dwell on it,” she said. “I have the disease. I know that it’s there. I can feel it all the time.”
But running has given her a chance to leave some of those concerns behind. “It’s nice to get it out of my head.”