In 2002, I was 24 years old. That year, I faced an important transition in my life – not from childhood to adulthood, as one might imagine, but similar. I was next in the group of patients being transferred from pediatric care at The Children’s Hospital of Alabama to adult care at UAB Hospital.
As one of the first patients to transfer to UAB, we were truly the “guinea pigs." Our transition was difficult. Life at Children’s was good – our nurses cared for us not just as patients, but also as family.That happens when you grow up in the hospital – spending days and weeks in “Club Med” several times a year.We were treated as “VIP” – in short, we were spoiled. While we had to adhere to a treatment program, we were allowed to essentially do as we pleased. There was an activity room with games and movies to keep us busy and we were allowed to go out on “pass” – which allowed us a chance to return to real life (even if just for a couple of hours) in the midst of doctors, antibiotics, and respiratory treatments.
Life at UAB was different. We were little fish in the big sea of patients at UAB. The doctors and nurses didn’t know us, didn’t understand our routines, and were simply not used to caring for patients like us. We were expected to stay in our rooms. For insurance reasons we were no longer allowed to leave the hospital. We had to be adults. Imagine our shock.
I know now that it wasn’t difficult just for the patients, though. Over the past eight years, we’ve faced many challenges and a steep learning curve, but we’ve done it together. Our doctors and nurses have grown as use to us as we have to them and they are now our “family” just as much as those from childhood.
What was your transition to adult care like? Were you transferring into a new adult program or one that was well established? I'd love to hear what other CF patients have encountered.