Growing up, I went to my CF clinic every three months and once a year, I'd go to the 'big hospital' in Chicago to get my PFTs done on the big machine, chest x-ray, lab work...the works. I had the same doctor for most of my childhood (there was maybe a year where our insurance changed and I had to switch to this awful doctor, but luckily, I got switched back!) and she was excellent. When I was 17-18, she started talking to me about switching to the adult CF clinic. I chose a doctor who had experience with pediatrics and adults because I thought that would be a good transition.
My current adult specialist was referred by my peds doctor and I couldn't be happier with her. She's wonderful!! I met her when I was 18 or 19, the summer between my freshman and sophomore year of college. Tim came with me to that appointment to meet her and I went in with a giant list of questions because I wanted to make sure she knew about me and what I wanted for my health. She was so understanding and patient with me and answered all of my questions that day. Since then, six years later, she's still extremely understanding and full of information. She has taught me so much about my disease and how to take better care of myself. I respect her opinion greatly and I know that when I'm there, she has my best interest in mind and that we're working together to do everything to keep me healthy.
As for my clinic visits themselves, I try to prepare ahead as much as I can. Since my clinic is over 3 hours away, I really try to make the most of my time there. I make a list of questions ahead of time, write down anything I've noticed about my health since I've seen her last, I bring my big medical binder (which everyone always comments on how organized I am) to pull up any recent test results. I make sure to bring a large bag with me for samples or anything I accumulate while I'm there. I also usually pack lots of snacks - this last time I went as far as just packing my lunch bag - because I know I'll be there for a long time and I don't want to stop anywhere nearby (not a good neighborhood) to grab something to eat.
It can be stressful at times to make sure I get in everything I wanted while I'm with my doctor because she's not always easy to reach in between appointments. And I always hate when I go to clinic with a cold, because I feel like its not a true reflection of how I've been feeling over the last three-four months. But luckily my doctor is very understanding of that and she's always great at helping me through it.
Overall, my clinic visits are a big deal to me. It's where I can really see the results of my hard work, my compliance to my treatments and exercise, and get a feel for my weight gain. After I get my clinic results, then I make a plan and act on it for the next few months to see my results again. It's hard when it's only every few months (and so far away) when I go there on a 'bad day', but I just have to remind myself, it's not always about the numbers, it's about how I feel!!
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