I was thinking today about what it was like for me in the past compared to now. So I decided to start a series of posts that reminisce to my younger days with CF.
I remember my smiling dad saying cheerily every day “TREATMENT TAPPING TIME” Tapping of course was our name for chest PT, and somehow he thought both the alliteration and saying it like it was snack time or play time made it seem better than what it was. Sometimes we’d play games while I did my nebulizer. And we would watch whatever I wanted while he did my Chest PT. I had a mask instead of the mouthpiece because I hated the taste of everything. And my nebulizer was about twice the size of the one I have now. Of course, I tried to avoid it every day. I would cry and my mom would pretend to call the doctor at which point I would shove the mask on my face with a pout. I complained that the Tobi tasted bad. I complained that the tapping hurt. I complained that I just wanted to sleep. To get me to be compliant we made a chart. Every time I did my vest 10 times, I got to go to the local candy store, Skinners, and get whatever I wanted. Sometimes I got $10 worth of candy which is a lot for mostly penny candy! But man did it give me something to work for, and I did my treatments reluctantly with the expectation of a reward. I mean, looking back, I had quite the schedule for a kid under 10 years old. Most kids my age came home to play with their friends, I had priorities to take care of first. I actually don’t remember what else I did for Nebs besides TOBI, as pulmozyme and hypertonic saline weren’t around yet. But I do remember the corny video they gave us when TOBI came out. They showed you how to use the PARI cup properly, with some music, and I think it had a setting of the moon or something crazy. The movie wasn’t something you’d want to watch for fun, but for some reason I watched it quite a bit. Imagine a video no other 6 year old would understand actually entertained me!
But “tapping” became a thing of the past when I got my new Vest. I will never forget trying it out for the first time in the hospital, singing my ABCs in the hilarious shaky voice it created. My doctor walked in and grumpily said “Thats a $10,000 piece of equipment you’re playing with!!!” My parents laughed once she left and every visitor in the hospital got a kick out of my shaky singing. But the vest created a new way to cheat. After I dumped out my medicine in my neb cup, I could easily turn the timer after just 2 minutes to hear the DING! Let’s admit, all us CFers cheated when we were little. But looking back I now know that full dosage of medicine and full vest time is essential. Glad I learned that now! The vest created a new sense of taking care of myself. I didn’t have to depend on my Dad to give me Chest PT, and there was nothing to complain about with the vest. All my friends would put it on and have fun singing the shaky song like me. They thought it was fun. And it was… until I had to do it every day! But looking back, I’m so glad I have my Vest, it has put me in charge of my own care and given me the independence to take care of myself. Now I don’t get trips to the candy store for being compliant, I get the satisfaction of feeling my best!