Eleven-year-old Marina Hoyle doesn’t always look sick. In fact, some people think she uses her cystic fibrosis as an excuse to skip school so she can stay at home and eat ice cream.
If they only knew the truth.
Because of cystic fibrosis, Marina had to miss the first dance of middle school. She had to miss her field trip in sixth grade about animals – tough for an animal lover who wants to become a veterinarian. And she’s never been able to join the swim team in the fall because that’s when she usually gets her first cold, which can turn into pneumonia and land her in the hospital.
Cystic fibrosis – CF, for short – is a lifelong disease that makes the body produce very thick mucus that can clog the lungs and lead to infections. Many people don’t understand the challenges of living with CF because the disease is so rare. In Charlotte, there are about 100 children with CF. And only 30,000 adults and kids have CF across the US.
“At its worst, it feels like you’ve been stuffed in a box and someone sat on your chest,” says Marina.
On the days she’s feeling well, she undergoes two, 30-minute treatments. First, she uses a nebulizer to inhale special medications. Then she has to put on a therapy vest. Attached to a generator by air hoses, this inflatable vest vibrates rapidly, shaking Marina’s chest wall to loosen the mucus. If she’s not feeling well, she must use the vest four times a day instead of just two.
And every time she eats a meal, or even a snack, she has to take enzyme pills that help her digest her food.
To battle a disease that takes such a physical and emotional toll, Marina has a whole healthcare team that can help both her and her family overcome this lifelong disease day by day.
All in for the whole family
This type of multidisciplinary team can be found only at a highly functioning place like Levine Children’s Hospital, says Ashley Chadha, MD, specialty medical director for pediatric pulmonology at LCH and Marina’s doctor. “We bring together a team of doctors, nurse practitioners, nurses, social workers, dietitians, respiratory therapists and child life specialists to provide the full spectrum of care that these patients and their families require,” says Dr. Chadha.
Beth Jorgensen, a social worker at LCH, knows firsthand how CF touches all parts of a family’s life. For parents of kids with CF, she provides emotional support and has set up education events at the hospital so parents and caregivers can learn from each other. She also helps families find financial resources. For example, since many parents have to miss work to take care of their children, she can connect them with help to pay their bills.
Making sure kids with CF get the support they need at school is also part of Jorgensen’s job. Because these kids have special dietary needs, she can arrange for them to be able to carry water bottles throughout the day or receive double portions at lunch.
“Because the treatment burden is so high, we build very close relationships with these families,” says Jorgensen.
Breakthroughs are coming
The hospital’s all-encompassing support, plus a robust research program, is helping LCH take its CF care to the next level. The hospital is in the final stages of becoming a certified Cystic Fibrosis Foundation Care Center. Once approved, the center will be responsible, along with its community physician partners, for diagnosing and treating all patients with CF in this region of the Carolinas.
LCH is also in the midst of a treatment revolution for CF. Since 2014, three new CF drugs have been approved. “With all of these medicines coming to market that can change the lives of our patients, we’re able to offer a new kind of hope,” says Dr. Chadha.
In just a few months, one of these drugs could represent a breakthrough for Marina. A first-of-its-kind drug targeting her specific form of CF was approved earlier this year – but only for children 12 and older. In August, Marina turns 12.
Feeling like home in the hospital
Finding a way to keep healthy could mean the world to Marina. Since she was diagnosed six years ago, she’s had to stay at LCH about two to three times each year, often for weeks at a time due to complicated infections.
Marina has grown accustomed to these stays – “the nurses and staff are very nice,” she says – but it’s never easy on her. She has to be connected to IV medicines for most of the day. And she has to stay in her room to avoid interacting with other kids with CF, who could unknowingly share dangerous bacteria between them.
But the worst thing about staying in the hospital? “I can’t be with my cats,” Marina says.
Fortunately, her hospital still has that animal touch. Marina takes blankets her grandmother made for her, with special fabric featuring unicorns and horses – her favorite animal. “The blankets make her feel more at home,” says Noelle, Marina’s mother.
Join Us for Cystic Fibrosis Caregiver Education Day
Are you caring for a loved one with cystic fibrosis? Then join us Saturday, October 27, 2018 to meet with other families dealing with cystic fibrosis and to learn the latest about cystic fibrosis care from the team at Atrium Health Levine Children's.
*Please note that this class is strictly for caregivers due to risk of cross-infection from cystic fibrosis patients.
