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Taking Charge of Your Own Treatment

When you first assume responsibility for your own treatment, you might feel a little like Dorothy in the Wizard of Oz stepping out of her house and into a land where everything looks vaguely familiar — yet completely different. The well-known enzymes, nebulizers and vibrating vests follow you into adulthood, but here you may also face other serious health issues — issues that make lions, tigers and bears look tame. Each day you make decisions about treatment that affect your here and now, as well as your future. Daily attention to treatment is your yellow brick road. But who are the scarecrow, tin man and lion? Your health care team, of course (just don't tell them that).

All roads lead to the adult clinic

If you are still at the pediatric CF clinic, sitting in small furniture and surrounded by Big Bird™ and other Sesame Street™ paraphernalia, you're not alone. According to research conducted by the Medical University of South Carolina, 20 percent of all adult CF patients still see a pediatrician. Eventually, however, you will most likely transition to an adult clinic. Leaving your pediatric CF clinic may be hard; after all, you've spent your whole life there. To make the transition smoother, ask your medical team how adult CF issues compare to pediatric issues. If information is power, what they tell you may very well allow you to walk into adulthood feeling better prepared to take on the CF challenge. The medical community is working to establish transition programs between pediatric and adult CF clinics. As those changes occur, medical professionals are asking, "When should a pediatric CF patient transfer to an adult clinic?" It's a question that boils down, in part, to an issue parents and young adults have been discussing for thousands of years. When does a child become an adult? The answer to that is as unique as you are.

Meds: Your daily itinerary

With your feet firmly ensconced in the coveted red ruby slippers, you are walking toward your future. All right, for the sake of gender equality, let's call them red ruby Reeboks. At any rate, you are walking toward a new, exciting and sometime uncertain stage in life — adulthood. There is no getting around the fact that the length of that future, and its quality, depends on your daily dedication to the treatments that optimize health. Yes, airway clearance and aerosol therapies take time, precious time, when you could be socializing, playing or falling in love. The payoff, however, may be a longer life filled with room for career, family and other adventures that feed your soul. Research shows that some people living with cystic fibrosis fall out of compliance because they "feel fine" and don't see an immediate benefit to slipping into a vest and tapping their toes to the vibrations of the air-pulse generator. The problem? Lung health can deteriorate undetected and, by the time a problem surfaces, it is difficult to reverse the damage. Why give CF a toehold when you have dreams to fulfill and medical advancements are rapidly changing the CF landscape.

Next Stop… IV Central

By this time in your life you are undoubtedly familiar with hospital stays designed to "tune-up" your body, including the IV administration of antibiotics. If you are living on your own, that experience might unfold differently, particularly if you've moved any distance away from your family. It's never too early to ask friends for support. Going to the hospital for any reason can be unsettling, so finding the right person, or people, to support you during your hospital stay is important. When you ask friends for companionship or emotional support while you are in the hospital, you offer them a gift. Many walk away with a better understanding of how precious life is. In the asking, you also receive, of course. Their visits may help banish loneliness, deepen a friendship or relationship, and remind you that you are not in this alone. And that's a good thing.

Sesame Street and Big Bird are registered trademarks of Sesame Workshop. Their use in this article is not intended to imply endorsement of CFvoice.com.