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New Pediatric Cystic Fibrosis Center leader passionate about family-centered, proactive care

Our Pediatric Cystic Fibrosis Center is one of the oldest and largest centers of its kind in the United States. We caught up with the center’s new associate director of clinical care, Carlye Tomczyk, to discuss the center’s past, present and future.
Nurse Practitioner Carlye Tomczyk, APRN, CNP, is the new associate director of clinical care for the Pediatric Cystic Fibrosis Center at University of Minnesota Masonic Children's Hospital.

As long as Nurse Practitioner Carlye Tomczyk, APRN, CNP, can remember, she’s loved medicine and caring for children.

On Feb. 1, 2018, Tomcyzk was appointed the new associate director of clinical care for the Pediatric Cystic Fibrosis Center at University of Minnesota Masonic Children’s Hospital. Tomczyk completed both her undergraduate and graduate nursing here at the University of Minnesota, and was drawn to the center, which is nationally recognized for its high standard of patient care.

“Many of our cystic fibrosis patients have a life expectancy above the national average because of our proactive, aggressive approach,” Tomczyk said.

We caught up with Tomczyk to discuss her interest in pediatric cystic fibrosis, the future of its treatment, and the center’s 50-year legacy of care.

Where does your interest in medicine come from?

As long as I can remember, I’ve been interested in the helping field. When playing with friends as a child, we would often play hospital. I was always fascinated by the role—including the science behind it—and working with children is a passion of mine.

How did you become involved in pediatric cystic fibrosis care?

During my nurse practitioner graduate work, I worked in a pediatric intensive care unit. We saw a lot of patients with complex pulmonary diseases in intensive care, but in those situations I’d often see them briefly, and then never meet with them again.

At the Cystic Fibrosis Center at University of Minnesota Masonic Children’s Hospital, we form long-term relationships with patients. Because CF is a chronic condition, we see patients every three months. Our team cares for patients from infancy into young adulthood, until they turn 21 years old and transition into our program for adult patients. Relationship building is a great part of our pediatric cystic fibrosis program. It’s also reassuring for our families to see a familiar face.

Learn more about our nationally recognized cystic fibrosis care.

How is our approach to treating children with cystic fibrosis different? What sets it apart from other centers in the region?

The Cystic Fibrosis Foundation rates us as a top ten center in terms of lung function for children. I believe this is because of our preventive care approach. We start early before children begin displaying symptoms. We aim to slow the decline of lung function, and we want children to grow and gain weight normally. We also put a strong emphasis on the education of patients and families so they can eventually accept the diagnosis as their “new normal.”

A lot of treatments are about the symptoms, but recently we’ve seen the emergence of more therapies that address underlying causes of cystic fibrosis. We use CFTR modulators—oral drugs—to treat the genetic defect that causes cystic fibrosis at the cellular level.

Tell us about the history of the University of Minnesota Health Cystic Fibrosis Center. 

The center has been around over 50 years. It is one of oldest of its kind in country, and one of largest. Many physicians and care providers around the country consult with our experts. Former University of Minnesota expert Warren Warwick, MD, invented the percussive vest, also known as the Vest Airway Clearance System. The wearable vest inflates and deflates rapidly, causing a high-frequency vibration that loosens mucus that builds up in the lungs of cystic fibrosis patients. The vests, which are still used today, have helped our patients lead healthier, more independent lives.

Patients treated at the Center enjoy a life expectancy above the national average. How do we achieve improved outcomes?

The national average for a person with cystic fibrosis is nearly 40 years, which is historically the highest it has been. Many of our cystic fibrosis patients have a life expectancy above the national average because of our proactive, aggressive approach. We begin working with patients when they’re very young. We also educate families from day one, so that they know what’s worrisome and what’s normal for cystic fibrosis. We empower our patients and families so that they can become their own advocates and—at an appropriate age—begin to take care of themselves.

We also bring together a variety of experts to provide comprehensive care, including physicians, nurse practitioners, nurse coordinators, respiratory therapists, dietitians, psychologists, social workers, pharmacists and genetic counselors as needed.

What is the future of patient care at our Cystic Fibrosis Center? What innovations will help improve our treatment of cystic fibrosis?

The future of our center is strong. We have a fantastic team, and that contributes to our approach and our outcomes. Our people are smart, passionate, and care deeply about their patients.

Though symptom management is an important part of care, we’re increasingly going after the cause of cystic fibrosis. A handful of studies and clinical trials are underway, and new ideas are always coming down the pipeline. If we don’t offer a clinical trial here, we will refer patient out to the centers that are involved. As more leading-edge options emerge for our patients, we will continue to incorporate them into our model so that our patients receive the best care possible.