Battling invisible disease: Distance runner Brayden Merrill, 19, isn’t letting cystic fibrosis hold him back

Brayden Merrill has made top strides all his life as a distance runner and in his many pursuits from Eagle Scout to 2020 valedictorian. As a runner, Merrill won in 800- and 1,600-meter events at state and holds Lakeside High School’s 5K record.

The 19-year-old Nine Mile Falls resident is home for the summer after his freshman year of college. And, he’s fairly healthy. What many people don’t know is Merrill has cystic fibrosis, a disease causing persistent lung infections and other complications.

CF affects the cells that produce mucus, sweat and digestive juices. While the secreted fluids normally are thin and slippery like a lubricant, for people with CF, a defective gene causes the secretions to become sticky and thick that can plug passageways.

There’s no cure, and CF patients follow a daily regimen of medications and self-care such as use of a nebulizer and vibrating vest to loosen mucus and ease symptoms.

“As a CF’er, I don’t go around and say I have CF, but I don’t not tell people,” Merrill said. “A lot of my close friends know that I have CF, but a lot of times they forget because they don’t live with the disease, and they don’t have to do the treatments. Because CF is such an invisible disease, they would forget a lot of times.”

However, more CF patients today see that picture improving, with the October 2019 approval of Trikafta by the Food and Drug Administration. It’s the first triple-combination therapy available and estimated to be effective for about 90% of CF patients. Merrill is taking Trikafta and calls it “super exciting.” “It’s improved lung function a couple percentage points,” he said.

Merrill also plans continuing participation in a clinical trial study, “Simplify,” led by a Seattle Children’s Hospital doctor. It’s investigating if, with Trikafta, other therapies such as inhaled hypertonic saline or Pulmozyme, a nebulizer medication, can be stopped safely. The study is testing any changes in lung function in participants who stop one of these chronic medications as compared with those who are assigned to keep taking them.

“In the CF community, this is a really interesting study because we’ve never actually looked at taking away medications; it’s always adding stuff to the regimen,” Merrill said. “They test lung function to see if it’s down, stayed the same or maybe even went up.” He’s hoping the study will find patients on Trikafta can simplify daily treatment routines or do a little less.

This past fall, Merrill won a $25,000 AbbVie CF Scholarship toward his education at Brigham Young University and was named that year’s “Thriving Undergraduate Student” because of his achievements. AbbVie is a biopharmaceutical company.

He’d hoped that fall to walk onto the track team at Utah Valley University, but he wasn’t able to as COVID-19 ended the season. He decided on BYU instead. The scholarship came as a surprise soon after the disappointment of losing a track opportunity.

In his first year at BYU, he took some general studies and will return later after a two-year mission starting this fall for the Church of Jesus Christ of Latter-day Saints. He’s interested in future studies in marketing or business.

Merrill said he’ll continue on his own to do distance running to stay healthy. He also credits his mom, Jamie, for ensuring that he and a younger brother with CF followed their daily treatments.

“My lungs have always been so healthy – thanks to my support group – my mom,” he said. “So, honestly, I think running was more of a good thing for me, and it helped my lungs stay strong.

“Being a runner, a lot of people would never have guessed that I have a lung disease because running is cardio and involves the lungs, and I was excelling in running.”

He served as cross-country captain and student body vice president at Lakeside. He ran cross country and track all through high school, taking third- and fourth-place finishes at state track, but not without health struggles that almost ended his time in the sport.

Merrill said while battling some lung infections, and on an antibiotic, the treatment made his joints hurt. “I just didn’t feel good. For a while there, I was going to quit cross country and track because I just couldn’t do it.”

That was during his high school sophomore year and going into the junior year. He went into the hospital for about a week because of pseudomonas, an opportunistic bacterial infection common in CF patients, according to the Cystic Fibrosis Foundation.

For Merrill, pseudomonas was difficult to kick and had him on the initial antibiotic, then that hospitalization for more intense treatments of antibiotics. Merrill had improved enough by his junior year to continue in his track season. “That’s when I got the 1,600 record and the 800 record.

“I just recently got over the pseudomonas, so little victories,” he said.

As a younger child, except for reminders from his mom, it was easy to forget pills and self-care treatments in the morning and at night, he said, “where I wear this vest that vibrates to try to loosen the mucus in my lungs. Then I also use a nebulizer and some nebulizer medication, some mucus thinners and just a medication to kind of irritate my lungs so I can cough up more mucus.”

The regimen takes about 30 to 40 minutes. “ I’m hooked up to my nebulizer and my shaky vest,” Merrill said. “And all throughout high school, through all my life, actually, I’ve had to do it twice a day, but with this exciting new medication, I only have to do it about once a day.

“With no cure, I have yet to let this disease devastate my life.” While noting treatments have come so far, he advocates for the creation of a program or cellphone app to help younger patients track their daily treatments and be rewarded for creating healthy habits, such as gift cards or prizes such as headphones.

Other than a summer job in retail, Merrill in his free time enjoys boating, long-boarding and sunsets. In the latter, he sees a parallel. “Something I’ve noticed in sunsets is that most of the time, the cloudier the sky, the prettier the sunset,” he said. “It brings more color and creates more vibrant skies.

“As with life, CF may be a cloud in my sky, but with that cloud, it has the potential to make the most colorful and vibrant sunset.”