Sunday, June 17, at 1 p.m. The Adult Cystic Fibrosis (CF) Program at Boston Children’s Hospital and Brigham and Women’s Hospital invites you for an afternoon of entertainment, education and discussion about life with CF and lung transplant. The event will feature a special screening of “The Power of Two,” a documentary offering an intimate look into the lives of twin sisters living with CF after double lung transplants. Their connection to the CF and transplant communities provides rare insight into the struggle—and triumph—of living with chronic illness.
The event is hosted by Ahmet Uluer, DO, director of the Adult CF Program, and his patient Beth Peters. The following blog offers a glimpse into Beth’s life and explains why events like this Sunday’s gathering are so important to the CF community.
This year, for the first time ever, more adults than children will be living with cystic fibrosis (CF), a chronic, inherited disease that affects a person’s lungs and digestive system. Just 50 years ago, most patients with CF didn’t live past elementary school. But thanks to modern medicine a majority of CF patients now live into adulthood, often into their 30s, 40s and beyond.
And while that’s great news, for patients with CF like Beth Peters, life is a little more complicated.
Beth is a 31-year-old patient at the Adult Cystic Fibrosis Program at Brigham and Women’s and Boston Children’s Hospital, as well as a high school teacher and theater director. With much of her lung function restored through a recent lung transplant, Beth considers herself lucky. But that’s not to say things have come easily for her.
“As anybody with CF will tell you—before or after transplant—the amount of energy we have to put in just to be status quo requires hours of effort,” she says. “Even if we look good, it’s still so much work.”
A typical day for a patient like Beth could include:
- Oral medications – about 30 pills per day, spread throughout the day
- Infusions (intravenous therapies) – ranging from 15 minutes to three hours per day, depending on the situation
- Inhaled medications – three hours every day, in a chair with a mask on your face, connected to a machine
- Airway clearance – can be handled through special vests that beat on the chest, particular breathing techniques, or machines; daily commitment varies
- Exercise – about 30 minutes (or more) of sustained exercise per day
Then there’s the ongoing string of tests: ultrasounds, MRIs, bone density scans and so on. Even after all that, CF patients remain vulnerable to sicknesses that sometimes land them in the hospital for a week or more.
These medical procedures become rituals for both children and adult CF patients, but adult patients with CF face unique challenges. They’re trying to get jobs, maintain friendships, enter the dating scene and live independent lives while managing treatment.
In another life Beth might have tried her hand at becoming a full-time actor, “But with CF, I could never be a starving artist,” she says. The health benefits and physical demands of a job are real concerns for many patients with CF. In the past, Beth had to take off every Wednesday to manage her health. The school hired a substitute to fill her mid-week absences.
Through all of life’s ups and downs, Beth, like many patients with CF, has relied on a close circle of loyal friends to support her. She’s also found great comfort by joining an Online CF community, where she and her fellow patients openly discuss their lives with CF.
Beth is now looking to take that community from the virtual world to the real world. As a volunteer event-organizer for the Adult Cystic Fibrosis Program at Brigham and Women’s and Boston Children’s, she’s helping organize “The Power of Two” in You: Staying Healthy, Living with CF and Lung Transplant.
The afternoon will include breakout sessions on balancing a busy schedule with CF and maintaining health through exercise. Speakers include the film’s director and stars, health and transplant experts and CF Program team members from Boston Children’s and Brigham and Women’s Hospital staff.
You are invited to attend “The Power of Two” in person or online (either way, please RSVP online). To follow Cystic Fibrosis Foundation Infection Control Guidelines, patients with CF aren’t able to attend the event in person; however, the event will be streamed live at childrenshospital.org/CF). Remote participants are encouraged to join discussions and ask questions through Twitter, or Facebook. (Use the hashtag #p2bos on twitter or leave comments on the event Facebook wall.) Limited access to the documentary also will be provided on iTunes to those who RSVP.
A version of this blog originally appeared on Health Hub, Brigham and Women’s health blog.