Monday, June 3, 2013

Kalydeco: Day 1 & my pre-K stats

Yesterday I took my first dose of Kalydeco! The bottle has been teasing me for over a month now, sitting on my dresser, and it was a relief to be finally be able to start. My overall description of day 1: Anti-climactic! haha

NO change in symptoms
NO side effects

I don't exactly know what I was expecting, but I did expect something. After waiting for 32 years I'm getting impatient and don't want to have to wait for the medication to start working. Am I being a pessimist because I keep thinking maybe this won't work for me? Maybe I'm putting too much pressure on this little blue pill of "magic". I asked around in the CF community and based on my CF it sounds like I need to give it 2 weeks - 1 month to really judge it. Ok, Kalydeco, I'll be patient but PLEASE PLEASE work for me.

Since I don't have much to report I'll give you a brief rundown of my CF background.
-Mutations: DF508 & 3272-26a>g (class V)
-FEV1: 72% My baseline has remained at 72% for 5 years now although I have seen a low of 49% and a high of 109%. My last FEV1 before starting K was 72%
-I am pancreatic sufficient
-I have never had a problem bringing up mucus and am always told my lungs sound "clear"
-I usually cough first thing in the morning but by the time I finish my morning treatment I don't cough much during the day at all
-I culture staphylococcus aureus and pseudomonas aeruginosa
-Usually have IV's once a year but was able to go two years since being pregnant with my daughter and starting Cayston -Meds: Pulmo, HS, TOBI, Cayston, Advair

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