Saturday, October 8, 2011

My "Declaration of Compliance"

Guest post by Devon D

With Cystic Fibrosis comes an endless list of responsibilities and things to do. One of the most crucial things on this list is treatments. Doing my treatments has always been a struggle.

For me, it was fun and friends first, then health.

At a much younger age, my parents literally forced me to do them. They sat on the couch next to me and had to watch me to make sure I was doing them right. But even then, I sped up the timer, and poured out my medicines. As time moved on, and I got older, things got worse. I began getting into arguments with my parents. I literally refused to do my treatments and eventually my parents 'gave up'. I did what I want, and I was okay with that. In a week, I should be doing 14 treatments. Out of those 14, I ended up doing 5 at most.

I went to my CF clinic for a normal appointment, I wasn't too concerned. My PFTs were down from my baseline, which is around 100% for my FEV1, my FEV1 was approximately 90%. For me that's a huge difference. I, thankfully, wasn't put in the hospital. But still, it was scary! I was honest with my doctor, I told him I wasn't doing good with my treatments. The social worker that has been part of my CF care team said to him, “She always goes through these phases and she always pulls herself back through.”

With that in mind, I went home immediately decided to do my treatments the right way. Unfortunately for me, that lasted for about a week. I quickly slipped back into my old 5 treatments a week routine, sometimes less. I had no motivation to do my treatments. I didn't care. I didn't want to be bothered with my treatments. All I wanted to do was go on the computer, go out with friends, do fun things. Anyone who has ever done treatments would know they don't exactly fit into the 'fun' category. I went on with my normal routine, happy as could be, doing what I wanted. Before I knew it, my next clinic appointment was just around the corner. I went in a little nervous. I knew I wasn't doing what I was supposed to be doing. I felt as if I let my whole care team down. I did my PFTs to the very best of my ability hoping for some miraculous pull through. I lucked out, my PFTs were not only good, they were better then they had been the last time. They were around 98%. I don't know why they were so good. I didn't deserve for them to be that good. I knew I didn't. I felt like it wasn't fair to the people who really try hard and always do what they are supposed and still don't have good results. I felt as if I had cheated my way through my PFTs. I should have been in the hospital right then and there. But my PFTs didn't show it, and my lungs didn't feel it. I felt good, physically. Luck is the only explanation I could offer myself. My doctor was so pleased, if only he knew how horribly I had been doing. On the outside I was smiling, proud of how well I was. But on the inside, well, that's a different story. I was breaking down. The whole way home, I silently cried while listening to my ipod. But it was then that I decided that I couldn't do that anymore. Surely, the next time I wouldn't be so lucky. I would be in the hospital without a doubt if I didn't pull myself together.

That very next day, I began with confidence. I woke up early and immediately got on my my vest. It was summer, so I knew if I got up later I wouldn't even bother to do it. For the first time in a long time I did my whole treatment the rightway. And you know what? I felt great. Of course it was only my first treatment, so I didn't feel a whole lot physically. But mentally, I felt so proud of myself. Everyday, that was my routine: get up early do my morning treatment, do whatever it is had to be done throughout the day, do my night treatment and go to bed. A little bit into my 'declaration of compliance', I missed two treatments. I was a little disappointed in myself, but I was far from discouraged. That next day I got right back into my routine. And do you know what? I haven't missed since. As of September 19, I have completed 30 days of treatments with out skip. That's 60 treatments. Now, not only am I feeling the physical results. Mentally, I feel on top of the world. I made it. I got off course for a long time, but I gained control of myself and now I'm back on track. I'm ahead of CF in this racetrack I call life.

Now that I've been 100% compliant for 30 full days, I feel absolutely and completely wonderful. I'm sick with a cold right now, but regardless I feel amazing. My lungs are feeling stronger than they have in years. I can breathe so easily. I can run. Running has always been my weakness in athletics. But I'm able to do it without stopping every minute. Now, I can run for 5 minutes without stopping. And because I can breathe more easily, I exercise more. And you know what? That has helped my appetite. My appetite has improved so much. That means my weight is stable, and my feeds go from 3 nights to 2 nights a week. My appetite, and better eating habits has affected my energy level.. I want to get out and do things. I look forward to going to school, rather than sleeping all day. I don't want to sleep until 12 on the weekends; I don't even want to sleep until 11...I want to be up by 10. I don't want to sit on the computer all day. This time last year, when I wasn't compliant, I was lazy, worn out, and unmotivated to do anything. It's a chain reaction.

Oh how treatments make a huge difference. I feel better than I ever have.

I can't honestly say doing treatments the right way is easy, nor can I say it's fun. But what I will tell anyone (at least anyone with CF) is that it is worth it. It's a struggle at first, and chances are some treatments are going to be skipped at first. And that's okay. It's no reason to be discouraged. Just never give up. Giving up the first time was the worst thing I ever did. Not only did I feel like I let my whole CF care team down, I let myself down. And that bothered me. I lucked out, when my PFTs were better. They shouldn't have. They should have been worse. And getting back into the habit was the best thing I have ever done.

If I can feel this amazing in 30 days of treatments the right way, I can only imagine how I'll feel a year from now, with this same routine. But not only is this going to help me a year from now, it's going to have a huge impact on my health years down the road.

If I can do this, believe me, anyone can. But do it for the right reasons. Don't do treatments for the sake of getting them done, because doing half a treatment isn't really doing it. Do treatments because you want to stay healthy. Do it because you want a bright future.

And although I've already said this, it is worth it. I promise. What's worse: spending an hour a day (or however long it takes for you to do treatments..I only do two half hour treatments a day) on treatments or spending a few weeks in the hospital/on IV antibiotics? Think about it.

Author's bio: I'm Devon. I'm fourteen, fifteen on November 6th. And I'm a freshman in high school. I live in New Jersey. I was diagnosed with Cystic Fibrosis at age 1, and with CF- Related Diabetes at age 12. I'm a straight A student with all honors classes, an athlete, and part of Animal Lover's Club, French Club, and SADD (Students Against Destructive Decisions) in school. And I volunteer and help people in every way I can.

Note from Ronnie: I can't thank Devon enough for contributing this blog. It's always great to hear stories of cysters (or fibros)that finally 'get it'. They get that they would rather make a "painful" short-term investment each and every day for the possibility of a long-term reward. My wish is of course that everyone would see the light as quickly as Devon has, but the great news is, it's never too late! It's never to late to give it all you have to be the best version of yourself!! Let's all get started today! Thanks again Devon :)