Q: Were you always compliant with your treatments? Do you have an advice for a child that knows they are very important, but hates to miss anything else going on in the family?
A: Do you want the "parent friendly" answer or the honest answer?
Too bad because you are getting the honest answer.
NO. I was not always compliant with my treatments. It wasn't until I got into college that I really figured out how important treatments were to maintaining my health.
There were a few reasons for this:
When I was a kid I was active. When I say active I mean outside from dawn til dusk playing sports, riding bikes, swimming, signed up for rec league wrestling, and getting into mischief. I had a great group of friends that I played with everyday after school and all day on the weekends. When you're an active kid, it's hard to understand why you need to sit still for a half hour and do a therapy. It just made no sense to me whatsoever.
My super active nature continued from elementary all the way to high school where I was a wrestler on the practice squad. I trained new teammates and participated in 2 hours of cardio/ match training 5 days a week from fall to early spring. During the season and in the off season, I took a weight training class where I worked on building muscle and endurance.
When we'd go into the doctor's office, my mother would tell the doc that I was not doing treatments and she just knew it was going to affect my lungs in a negative way. Then, I'd blow my PFT's (Pulmonary Function Tests) and the numbers would be off the charts fantastic. The doc would be pleased. While my mom would be happy as well, she'd be irate at the same time. She was also taking care of her daughter who was in and out of the hospital all the time and could barely breathe. She wanted me to live my life, but she also wanted me to be realistic and develop a CF routine that I could manage as I grew older. One that would handle the eventual progression of this disease.
My wake up call (as I mentioned in this previous post) was when I hit my mid 20's and had to go in for my first round of hospital I.V.'s. My life had drastically changed. I was in college at the time and became less active. I went from hitting the gym 3 days a week to working on 10 page papers and hanging out in the dorms. My lungs got worse because of the disease, but things may have been different had I made the adjustments out of high school to fit my new routine. I can speculate all I want, but I think prophylactic treatments would have limited any damage that occurred during my college transition. It's not that I didn't do my treatments. I did them, but sparringly because I figured my ability to bounce back from being sick would always be the same. And it was....until I got really sick that first time.
Fast forward almost a decade (ugh, has it been that long?) and I do 3 treatments a day, 4 if I'm under the weather. I try to be active in some way every single day because I know it helps me stay healthy. Walking my dogs, doing 100 push ups (I'm still stuck at 50) and trying new daily routines until I find the one that fits just right. It's much harder to develop and stick to a routine as you get older. That's why I tell young people to develop those good habits now. I'm talking everything: Exercise, treatments, ordering meds, making doctors appointments, learning your body and it's warning signs for getting sick so you can put a stop to it early, and juggling a social life with a CF life. It all matters.
So to your son or daughter, I say this:
It's so important that everyone in the CF Community realizes that you have your own personal journey with this disease and that you do the best you can with what you are given in life. That's ONE of the reasons that you see so many people with this disease achieving amazing things physically, professionally, and academically. It's also why you see some people struggling to stay healthy, but still achieving the goals they set for themselves. Big and small goals like finishing school or walking up a flight of stairs. All of those goals are amazing. Their value should never be discounted. Realize your strengths and NEVER sell yourself short. Work around your obstacles. Know that sometimes you will not achieve your goals, but don't get discouraged forever. The key to being successful in life (in my opinion) is believing in yourself, working toward your goals, and always creating new ones. Sometimes I need to be reminded of that myself. :-)
You say, young friend, that you understand the importance of doing your treatments, but don't want to miss out on anything? There are a few things that you can do:
1. Ask your family to wait until you are done with your treatments to start the activity.
2. Ask your family if they can move the activity to a spot where you can participate while you do treatments.
3. Take this alone time to do something that only you enjoy doing. Listen to music, record your favorite show and save it for treatment time, do your homework (Ugh, don't I sound like your parents?), use the computer if you have one. Find a NEW hobby. Take me for instance...I started a blog. :-) While you do your activities remember to focus on your treatments. The coughing, the breathing, the whole nine yards. That's the most important part.
MOST OF ALL...
4. Realize that you are doing treatments so that you DON'T miss out on anything going on in the family. If you get sick, that can lead to all sorts of missed family time thanks to doctors appointments, lack of energy, missing school and having to catch up on homework. The list goes on and on. You do treatments to PREVENT getting sick, kiddo.
I hope this helped you a little bit. I love you and I believe in you.