Thursday, May 2, 2013

CF Awareness Month Blog- The First Year- The Worst Year


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.

4 comments:

  1. 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."

    That'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! :)

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    1. 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!

      I agree that I could talk to you about this for hours!!

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  2. Very interesting post!! Treatments in the dark made me laugh. I think that is the first time I have heard anyone say that.

    IH 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 :)

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    1. 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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