When CF Goes to College
For many young adults living with CF, leaving home to attend college is a recent, and welcome, development. But campus life opens new questions about disclosure, nutrition, and adherence to treatment.
Amy, a 27-year-old business woman with CF — and two undergraduate degrees (business and international relations) — recently received her Master of Business Administration from the prestigious USC Marshall School of Business. She knows the pitfalls and pleasures of adapting a CF lifestyle to the college campus. She faced juggling commitments, prioritizing treatments and, of course, disclosing CF. Never one to cower before a challenge, however, Amy met the issues head-on, starting with disclosure.
“The summer before I moved into the dorm, I told my roommate about the disease,” remembers the USC Trojan. “I told her that I have some medication treatments to do, but I’d be more than happy to work with her and her schedule so I wouldn’t disturb her too much.”
When it came time to making smart choices about her social life, Amy put the health of her lungs first by avoiding smoke-filled venues and parties. According to data from the Cystic Fibrosis Foundation, the 18- to 24-year-old age group has the highest percentage of exposure to secondhand smoke of any CF age group1. To fully protect yourself, you should be in 100 percent smoke-free environments. Amy admits that the commitment to health may lead to some hard choices, not only about avoiding smoke-filled environments, but also about how to divvy up time each day.
“I had to make some decisions,” says the MBA. “When you’re in college you have so many choices: time spent sleeping, time spent studying, time spent out with friends.” While juggling all of this wasn’t easy for Amy, her priorities were clear.
“We all know with CF, getting enough sleep, getting proper nutrition, exercising and complying with medication routines is the key to success - the key to staying healthy and being able to enjoy other aspects of your life,” says Amy. “So making sacrifices for me — not always going out with my friends, or maybe going out with my friends but coming home earlier to get the sleep I needed — those trade-offs were essential to my success during my undergraduate experience.”
Amy’s commitment to her health and treatments didn’t happen overnight. Her mom, Susan, can take much of the credit for her daughter’s commitment to health. Susan began making Amy responsible for her own treatments and medication, with parental guidance and supervision, when Amy was barely out of elementary school. As Amy approached college age, Susan, pushed Amy’s transition from pediatric to adult care.
“I purposely started her [transition to adult care] in her senior year of high school, so she could get used to it,” says Susan. She believes that both steps helped her daughter prepare for a smooth transition to life at school.
Wherever you go, whether it’s off to college, or some other life adventure, when you depart from home, experts familiar with transition recommended that you have a relationship with an adult healthcare provider before a medical crisis forces you to find one. Inquire with your current CF center to learn if it has a structured transition program, for instance, where you could meet an adult-oriented pulmonologist in a familiar setting prior to moving out of the house - or the state!2
So, what advice would Amy give to other young adults leaving home and living on their own for the first time?
“What CF has really taught me is sometimes I have to, even if I know people might be a little bit upset with me, I have to put myself first,” acknowledges the graduate. “I have to be very dedicated to my needs. Medication, compliance and exercise, and proper rest, and nutrition are really… the keys to prolonging my life and keeping me healthy and happy and doing the activities I want to be able to do.“
1Cystic Fibrosis Foundation Patient Registry. Annual Data Report 2007; 2008: 11
2Tuchman, L.K., Slap, G.B., & Britto, M.T. Transition to Adult Care: Experiences and expectations of adolescents with a chronic illness Child: care, health and development. 2008; 34: 558