The first year after diagnosis was a confusing time in my life. I went from being a perfectly normal healthy person with a cough (or so I thought) to having a chronic, progressive illness. I went from being exactly like my peers and siblings to needing to do physio once a day and take enzymes (Oh, how I miss those days. I had no idea how easy my CF was to take care of at the time). I went from seeing the doctor once a year to going every 3 months for hours upon hours. I now had a dietitian, a respiratory therapist, a social worker all in addition my pediatrician and CF doctor. It was all a little overwhelming!
I had a lot of trouble doing my treatments. First, I could not stand the sight of my own mucus. I needed to use the Flutter every morning before school which was great in that I didn't cough all through first period anymore, but I hated looking at the thick mucus I coughed out of my lungs. In fact, I did my treatments in the bathroom with the lights off so I wouldn't have to look at the foul slime coming from my body. (It is funny to me now since I never think twice about my mucus and look at it closely to determine my current lung health). I also had a hard time feeling like I really NEEDED to do them. My logic was that I lived 14 years without doing a single treatment I wouldn't die because I skipped one night. At the time I knew CF was progressive but was blissfully unaware that it was fatal so I did not totally understand the importance of treatments.
The positives of that first year were that I coughed significantly less and I finally started growing. I had a nice growth spurt soon after starting enzymes. I was also happy to finally know why I coughed so much. I always knew something had to be wrong because nobody else I knew had a chronic cough so it was a relief to realize that we finally knew what exactly was causing my cough.
My CF became much more prominent in my life around the same age as when you got diagnosed -- when the Vest came out. You could have taken these words right out of my mouth, "My logic was that I lived 14 years without doing a single treatment I wouldn't die because I skipped one night. At the time I knew CF was progressive but was blissfully unaware that it was fatal so I did not totally understand the importance of treatments."
ReplyDeleteThat's why it kills me so much that my parents pretty much ignored my CF for the first 13-14 years of my life! Sometimes I think of how much healthier I could be if I did treatments my whole childhood (which I didn't until I was 14)...but then I have to push those negative thoughts aside and just worry about the here and now. I'm taking care of myself now and that's all that matters.
I wish you and I lived closer because I feel like we could have a several hour conversation about this topic! :)
I often wonder how much healthier I would be if I had an earlier diagnosis and if I had been more proactive when I was first diagnosed. I think my parents thought (and still do??) since I had such a late diagnosis I must have a super mild form of the disease, but that obviously isn't the case. At least we are both being proactive about our health now!
DeleteI agree that I could talk to you about this for hours!!
Very interesting post!! Treatments in the dark made me laugh. I think that is the first time I have heard anyone say that.
ReplyDeleteIH you and I both were diagnosed later in life me before I hit my teen years. When I was diagnosed I didn't know anything about it CF. I just remember my mom becoming very upset when we found out. I just assumed ok I guess I will still be coughing and taking care of myself in a different way. At that time I was doing flutter no VEST. I didn't get the VEST until years down the road as my dr. said that flutter was sufficient. I am glad I finally did get the VEST. My CF today is a little different than when I was first diagnosed bc I can now tell that things aren't as healthy as they use to be but I am still the same old me.
To both you and Colleen, I am so glad that I have found you on blogger and other social media sites. If you two ever want to talk you know where to find me :)
I think a late diagnosis adds an interesting element to the disease. There is an adjustment period that isn't there for people who have been doing treatments since birth. I like finding others with late diagnosis as well because our experiences are slightly different from other CFers.
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