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Transitioning to an adult center
Recently, transitioning from a pediatric to adult CF center has been a topic of discussion in a group I belong to. I remember how difficult that transition was for me. A couple years ago, I wrote about this subject for the CF Foundation Community Blog: Facing My Fears About Transitioning to an Adult Care Team | CF Foundation
Understandably, it can be daunting to make such a big change in care settings, especially when major life changes are happening outside of CF as well. This is a time when many teens are setting out on their own, going to college, moving away from home, etc. I struggled not only with the change in location and CF team members, but to shoulder the burden of care myself — managing prescriptions and appointments, finding the motivation and discipline to stay on top of my treatments, learning the ins and outs of health insurance (which, to be honest, I still haven’t mastered).
When I left my pediatric clinic, there wasn’t a very good process set up. I felt like a baby bird being booted from the nest, “Bye, and good luck!” I know that things have changed since then. I know that my adult center works closely with the pediatric center to make transition easier. I recently heard someone say, “transition starts on day one” meaning that from the very first pediatric visit, families are being prepared for the eventuality of their child with CF reaching adulthood and taking on the responsibilities of their care – including the transition to adult care.
What was your experience like transitioning to an adult center? What went well, and what didn’t? (If you were diagnosed later in life, this is something you may not have experienced.) If you’re a teen (or parent of a child with CF) what are your thoughts and concerns about this eventual transition?
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