This is a blog that Andy has written to describe his battle with cystic fibrosis. Andy is 40 years old and is married to his beautiful bride Andrea and has two miracle children, Avery and Ethan. Andy appreciates each day and hopes to show the doubters that in his world CF stands for Can Fight!
Thursday, October 11, 2012
Remembering the transition
I was watching a film recently called "Becoming Christopher" about a boy going through the transition of going from a pediatrician to an adult CF doctor. He is 22 in the film. It reminds me of my days moving from the pediatrician to the adult doctor. There wasn't a video then showing patients how the transition should go and my doctor's office did a lousy job of making the transition smooth for me.
One morning I wasn't feeling great so I went to my CF pediatrician. They told me I could not be seen. I felt like Rosa Parks being thrown in the back of the bus. "What do you mean you can't see me?" I asked. It turns out I was over 25 now and was too old to go to a pediatrician. When I was growing up, Adult CF Centers were like unicorns. You did not see them anywhere. At this time, my doctor had fled the practice for another opporunity out of state. I wasn't even told until I got to his office that day that he'd left the practice.
I felt helpless and lost. I never liked going to the doctor and now apparently the doctor felt the same way about seeing me. I made some calls and was able to get an appointment at the Emory Clinic where I met my new adult CF doctors. Eventually Dr. Lindy Wolfenden became my doctor. We became pretty close as a lot of CF patients become with their doctors. She had a good sense of humor and told me how it was. I didn't always like the latter but I believe it made me tougher. Sadly, Dr. Wolfenden died of breast cancer a few years later. A new transition for me.
In hindsight, it was time for me to get out of the pediatrician's office. I was sick of being amongst kids and walking into rooms with toys and children's books. I was also tired of going in for X-rays and having the receptionists ask me what my kid's name was. "I'm the kid," I always had to say.
While I understand why the change had to be made, I didn't appreciate the way I was made to feel. I felt alienated which was a feeling I was all too used to feeling because of my CF.
I'm just glad I've got a good staff at Emory that I work with now. I hope other patients have a smoother transition.
Andy
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