Kieran’s Balancing Act: Living with Cystic Fibrosis

For young gymnast and CHOC Children’s patient Kieran Cacciatore, life is a balancing act in more ways than one.

Living with cystic fibrosis since age 1, Kieran is an accomplished gymnast who recently competed at a national level and will start middle school this fall.

“I can’t say enough about what it’s been for him and how he’s been able to succeed regardless of his health,” his mother, Robin, says. “What he’s accomplished this year is amazing.”

gymnast with cystic fibrosis

Kieran has become an expert at balancing his athleticism, school work and treatment. Like his gymnastics practice schedule, Kieran’s daily care routine is arduous: He swallows six capsules before every meal and snack to aid digestion. Twice daily, he has sessions with a nebulizer, which allows him to inhale medication that rehydrates his nasal passages, and a special vest that vibrates against his chest to loosen mucus.

As a baby, Kieran seemed to always be sick, his mother recalled, and frequent doctor visits, tests and medications didn’t help. When Robin discovered one morning that Kieran’s facial muscles had weakened on one side, like he’d suffered a stroke, she immediately rushed him to the hospital.

There, after a series of tests, Kieran was diagnosed with cystic fibrosis. The genetic condition leads to frequent lung infections and causes breathing difficulty and digestive system problems.

“We never had health problems, and here we were talking to gastroenterologists, pulmonologists and social workers,” Robin said. “I wanted to get educated and make this disease management a part of our daily life. It wasn’t easy, but we had a very good support system.”

Robin was determined not to let illness isolate Kieran or the family. So, they attended athletic events, enrolled Kieran in school, and began gymnastics training when he was 4.

Already a good climber, Kieran was a natural, the family discovered. Weekly practices soon turned twice weekly, and a after a year, he joined a team.

Now 12, Kieran’s longest practice is a weekly five-hour session – and his hard work has paid off. He recently competed against more than 200 athletes at USA Gymnastics’ 2017 Men’s Junior Olympic National Championships, and progressed to the final rounds.

Kieran’s interest in gymnastics is likely only to grow, his mom says.

“I do think he’s going to stick with it,” Robin says. “It’s as much a part of his life as the treatments are.”

Learn more about our Cystic Fibrosis Center

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Meet Dr. Amy Harrison

CHOC Children’s wants its patients and families to get to know its specialists. Today, meet Dr. Amy Harrison, a pediatric pulmonologist. Dr. Harrison attended Indiana University School of Medicine, and completed both her pediatrics residency and fellowship in pediatric pulmonology at the University of Minnesota Children’s Hospital. She currently serves as co-director of CHOC’s Cystic Fibrosis Center, and has been on staff at CHOC for five years.

Dr. Amy Harrison
Dr. Amy Harrison

Q: What are your special clinical interests?

A:  Cystic fibrosis (CF), muscle weakness (muscular dystrophy and spinal muscular atrophy), asthma and general pulmonary health, chronic disease.

Q: Are you working on any current research?

A: Our CF program was awarded the CF Fundamentals Learning and Leadership Collaborative in June 2015, which has allowed us to improve our CF care processes and clinical outcomes for people with cystic fibrosis. We are currently studying ways to improve our patients’ knowledge of, and adherence to, prescribed pulmonary therapies.

Q: Are there any new programs or developments within your specialty?

A:  Our CF program was awarded a mental health grant through the Cystic Fibrosis Foundation to develop and implement a depression and anxiety screening program for patients with CF and their caregivers. Funds will enable the team to expand its social worker’s availability and have a designated psychologist to help patients and caregivers. They will provide screenings, evidence-based guidelines and follow-up care for depression and anxiety, as well as develop a community referral network of mental health providers. CHOC’s CF model, if successful, could be replicated in other specialty clinics.

In addition, we are excited to offer many cutting-edge therapies for CF patients including Orkambi and Kalydeco, medications that help the defective protein in CF function more normally, thus treating the underlying cause of CF.

Q: What are your most common diagnoses?

A: I see patients with a range of conditions, including asthma, chronic cough, recurrent pneumonia, cystic fibrosis, muscular dystrophy and spinal muscular atrophy.

Q: What would you most like community/referring providers to know about you/your division at CHOC?

A: The pulmonary division at CHOC offers comprehensive care for all patients with lung disease and sleep disorders from extensive lung function testing to sleep studies and diagnostic procedures such as bronchoscopy. We also have comprehensive services for patients with sleep apnea, sleep breathing disorders including apnea monitors and BIPAP data analysis for clinical management. In addition, we also offer services in Huntington Beach, Mission Viejo, Corona and Pomona Valley.

Q: What inspires you most about the care being delivered here at CHOC?  

A: I enjoy caring for children with chronic conditions and helping them to find ways of living normal fulfilling lives. I take great pride in my patient’s accomplishments and find their stories inspiring. I most enjoy creating a true partnership with my patients and their families to find ways to improve their care.

 Q: Why did you decide to become a pediatric pulmonologist?

A: I was always interested in science from a very young age and pursued a medical education due to my own fascination with learning more about how our bodies work. During my training, I developed asthma myself and found my strong relationships with my own medical professionals enormously helpful in empowering me to deal with a chronic disease.

Q: If you weren’t a physician, what would you be and why?  

A: I would probably set up my own Etsy shop and sell things I create! I often make homemade gifts for friends and family members for birthdays and holidays. I also love to travel and exposing my children to new cultures.

Q: What are your hobbies/interests outside of work?

A: I love spending time with my family and my three children, ages 2, 6 and 10. In addition, I enjoy reading, visiting museums and traveling.

Q: What have you learned from your patients?

A: I am continuously amazed by how strong and resilient my patients can be. I learn so much from them, and I have now had three patients tell me they were inspired to pursue a career in medicine because of our relationship and their disease.

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Depression and Anxiety in Cystic Fibrosis Patients and Parents

A recent study of over 6,000 cystic fibrosis patients, ages 12 years through adulthood, and over 4,000 parents, found that depression and anxiety were two to three times more elevated in patients with cystic fibrosis (CF) and in parents of children with CF compared to the general population.[1] Although depression and anxiety are common in CF, the stigma associated with mental health issues often make people less likely to talk about them.  When left untreated, depression and anxiety can affect a patient’s ability to effectively manage his treatment plan.  CF patients with untreated depression, anxiety or both tend to have worse lung function and lower body mass index, in addition to experiencing more hospitalizations.

To address this issue, the Cystic Fibrosis Foundation (CF Foundation) announced newly developed guidelines for screening and treating depression and anxiety.  CHOC Children’s  —  one of only a few affiliated care centers of the CF Foundation in Southern California and the only CF treatment center in Orange County — is one of the first care centers to adopt the recommended guidelines.

“The psychology component of our cystic fibrosis program really makes CHOC stand out,” said Dr. Amy Harrison, pulmonologist and CF specialist at CHOC. “Our multidisciplinary approach allows our care team to manage all aspects of CF from diagnosis to physical and mental health.”

Dr. Amy Harrison

The program is a recent recipient of the CF Foundation’s grant, Implementation of the Depression and Anxiety Guidelines: Award for a Mental Health Coordinator. The grant provides CHOC the opportunity to have a psychologist at every CF clinic to help patients and families, and extends the CF social worker’s availability. They will provide annual screenings, evidence-based interventions and follow-up care for depression and anxiety, as well as develop a community referral network of mental health providers.

Guideline Recommendations

The guidelines propose that screening and treating depression and anxiety should become a routine part of CF care. The voluntary screening consists of completing a couple of short questionnaires.

Recommendations include:

  • All patients 12 years and older should receive annual screening for depression and anxiety.
  • Parents and caregivers of patients 17 years and younger should be offered annual screening for depression and anxiety.
  • A stepped process for prevention, screening, assessment and intervention. This can include talk therapy, medication or a combination of the two.

Staying Well

Patients and caregivers who recognize the beginning signs of depression or anxiety should speak to their CF care team.  In partnership with the patient and/or family, CHOC’s team will recommend the appropriate interventions.

“CHOC wants to help patients and parents break their goals into manageable pieces and focus their energy where they would get the most ‘bang for their buck.’  Patients and caregivers are experts on their own lives, so this is truly a partnership to help families continue the strategies that work for them and make changes to those that don’t,” explains Adrianne Alpern, Ph.D., a postdoctoral fellow in CHOC’s pediatric psychology department and a member of the CF team.

The CF Foundation offers the following general guidelines to help mitigate the impact of depression and anxiety:

  • Talk with someone, preferably in person.
  • Spend time with people who lift your spirits.
  • Avoid alcohol and drugs.
  • Continue with your CF treatment plan.
  • Practice good sleep habits.
  • Spent 30 minutes outside each day.
  • Make time for things you enjoy.
  • Be physically active.
  • Practice relaxation techniques.
  • Avoid caffeine and cigarettes.

Referral to the CHOC Cystic Fibrosis Center

When a child is diagnosed or is suspected to have CF, a referral to an accredited CF care center can ensure that the child gets diagnosed properly, lives a long and healthy life, and receives treatment based on the most advanced research available. With access to a full range of CHOC pediatric subspecialists, the CHOC Cystic Fibrosis Center offers a number of life-enhancing technologies and treatments.

CHOC’s multidisciplinary CF clinic includes a board-certified pulmonologist and gastroenterologist, respiratory and physical therapist, nutritionist, nurse specialists, social worker and a psychologist. An endocrinologist and other specialists are available to attend the appointment, if needed. Genetic testing and counseling can also be provided.

For appointments, please call the Patient Access Center at 888-770-2462 (888-770-CHOC).

[1] Quittner AL, Goldbeck L, Abbott J, Duff A, Lambrecht P, Solé A, Tiboshc MM, Brucefors AB, Yüksel H, Catastini P, Blackwell L, Barker D. Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: results of The International Depression Epidemiological Study across nine countries. Thorax. 2014;69:1090-1097. doi:10.1136/thoraxjnl-2014-205983

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