//What’s It Like to Live With Cystic Fibrosis?
December 22, 2016

What’s It Like to Live With Cystic Fibrosis?

By Penelope Larson | Category: Intouch Culture |

“If we can come up with a tool, or a service, or a technology to improve patients’ lives, that’s worth doing.”  — Intouch CEO Faruk Capan

Throughout 2016, we made it our mission to connect with patients living with chronic conditions. We wanted to hear their stories — and the stories of their caregivers — and learn about what they need to make their lives easier. In our travels with our #ALLin Airstream trailer, we met people living with multiple sclerosis, Crohn’s disease, diabetes, leukemia, and other lifelong conditions.

As part of this yearlong effort, we also invited patients and caregivers into our offices to tell us about their challenges and triumphs.

Our most recent visiting speakers were patients who have cystic fibrosis (CF), a disease first recognized in 1938. CF is a lifelong, progressive genetic disease that causes a buildup of mucus in the lungs, pancreas and other organs.

In the beginning, people diagnosed with CF could expect to live very short lives. The cause of death was most typically due to lung infection. Now, after decades of research and treatment advances, CF is a disease people not only live with — they thrive. Currently, there are more than 30,000 people in the United States living with CF.

“The people we talk to, I find, are some of the most courageous people I’ve ever met. Hearing their stories at work gives so much perspective. It really reminds us about why we work in healthcare.”  — Michelle Morris, Intouch associate director of strategic planning

Amber, who spoke at our Kansas City office, was diagnosed with CF as an infant, and as a college student learned she had diabetes. Self-care is difficult but critical, she says. Each day includes eating the right mix of foods; taking dozens of medications and supplements; monitoring glucose and administering insulin for her diabetes; plus using inhalers, nebulizers and a vibrating vest that loosens mucus in her lungs. But these time-consuming activities are worth it for Amber, who has a three-year-old son to raise. She even tries to educate him about her conditions by letting him help when she changes her insulin pump. They sit together at the table, and he hands her the supplies she needs. When it’s time to give herself a shot, she always plays it up for him and acts brave, and he’ll tell her, “Be brave, momma!!”

Liz, who spoke to New York Intouchers, is a 25-year-old with a strong sense of her own mortality. “I have a life-threatening disease that will eventually kill me,” she said. “If I don’t get a lung transplant, yeah, that’s the reality I’m living with.” Still, she tries not to let her condition control her. Liz’s parents raised her to keep moving forward, no matter what. “I was told, ‘You can do anything you want. You might have to go about it a different way; it might take you longer, but you can still achieve things.’”

Sean, a 41-year-old with CF who visited our Chicago office, had a double lung transplant two years ago. And despite the challenges CF throws at him, he’s never even considered giving up. Since the transplant, it’s been a whole new world. “It’s been quite a journey, but I feel like I have my life back,” Sean said. He does regular, everyday things most of us take for granted — plays basketball with friends, goes out to dinner — and recently participated in the Cystic Fibrosis Foundation’s Chicago CF Climb for Life, a fundraiser that challenged participants to climb 58 floors of the John Hancock tower in Chicago’s Gold Coast neighborhood. Like many of the patients we’ve heard from, Sean is hopeful. “[Newly diagnosed patients] are bound by nothing,” Sean said. “Stay positive. Do your treatments. And take your meds.”

We’re wrapping up our #ALLin journey, but what we’ve learned will stay with us. Being able to connect real names and faces to what we do every day reinforced that our work — hacking healthcare for the people — really is a worthwhile pursuit.