Dylan Mertz is like thousands of other dedicated high school student-athletes.
Dylan participates in football, basketball, golf, track, baseball, lacrosse, and skiing. He works out almost daily, makes good nutritional choices and focuses on keeping his body healthy. Though his interests span many different activities, he is most passionate about lacrosse. Since picking up his first lacrosse stick, he has dreamed of playing at the college level. In many ways, he’s the picture of health.
But there’s one thing that makes Dylan different from other high school sports aficionados: He has cystic fibrosis (CF).
CF is a life-threatening, chronic, progressive disease that affects the lungs and gastrointestinal system. The hallmark of CF is a buildup of thick, sticky mucus that can make it difficult to breathe and can contribute to recurring lung infections. CF can also damage other organs, including the liver and pancreas, and people with CF often have trouble digesting the food they eat.
There is no cure for CF. However, there is hope. University of Minnesota Health’s Cystic Fibrosis Center—one of the nation’s oldest and most experienced CF centers—is at the forefront of a proactive approach to CF treatment.
Our Cystic Fibrosis Foundation-accredited program has a long history of CF innovation and is renowned for excellent long-term patient outcomes. For years, our center has taken an aggressive approach that helps patients like Dylan reach the best long-term outcomes. Most people with CF are diagnosed at birth, thanks to newborn screening. Once a child is diagnosed, the center starts treatment right away with pancreatic enzymes that will help babies with CF digest their food and grow at a healthy rate. Respiratory care begins at two to three months of age, with daily medications and manual airway clearance therapies. The goal of these treatments is to prevent a decline in lung function over time.
The center also offers leading-edge treatments options—including the first class of medications that treat CF’s underlying cause. These medications, called CFTR modulators, have been approved for some CF patients. These drugs are intended to help the CFTR protein work more normally to relieve some CF symptoms.
“Because of these advances—the modulator drugs and newborn screening—outcomes are improving dramatically for people like Dylan,” said Nurse Practitioner Carlye Tomczyk, APRN, CNP, the associate director of clinical care at the CF Center. Tomcyzk has provided care for Dylan and his family for years.
Dylan has remained healthy throughout his life, avoiding the frequent hospitalizations that often plague CF patients. His lung function consistently exceeds expectations, and he is active and athletic every day. Pam credits Dylan’s success to his dedication to treatments—which can take up to two hours a day—as well as a strong support system at school. Dylan is also highly involved in his own care plan.
“Dylan has always been very interested in co-producing his care, even before that term was a buzzword in healthcare,” said Dylan’s mom, Pam Mertz. “The University of Minnesota Health CF Center has encouraged him to take ownership of his care and approach it like a partnership, and they live up to that standard every day. I think the fact that he has had a voice—a role on his healthcare team—has been a huge factor in the level of health that he has been able to lock in.”
“What stands out to me about Dylan is his family support,” Tomcyzk said. “The family doesn’t let CF dictate how they live their lives. Dylan knows how important it is to take care of himself, but he also knows that he shouldn’t let it get in the way of his dreams or aspirations.”
For now, Dylan’s focus is on living his life fully and chasing his dreams. “CF is not who I am, it’s what I have,” Dylan said. “It does not define me, and it does not limit me.”In a few months, Dylan will go away to college to study public policy, with an eye to continuing to empower young people dealing with challenging diagnoses. And yes, he will be playing lacrosse for his school.