6 months on Kalydeco

If you know me or have read any of my past blogs, I have Cystic Fibrosis. I am officially at 6 months on the amazing little blue pill, KALYDECO.

Kalydeco is a new wonder drug in the cystic fibrosis community that has helped to extend the life expectancies for those with the specific genotypes it treats. I fell into this category.

I will now warn you that this post could get a bit graphic but I feel like I need to be open for any other CF patients who might be having issues. So click off if that may concern you.

So Kalydeco. So much has changed sine the wonder drug.

  • I no longer cough at night
  • My cough now is really just clearing my throat
  • I now have acne that is being controlled by ketoconozole rinse and cream
  • I experience discharge pretty regularly
  • I had excessive sweating begin, and ended up getting botox for it
  • Sinus pain and pressure now only occurs sporadically and typically with weather changes
  • I no longer use breathing treatments or inhalers
  • Dr has said I can try stopping singulair in the fall
  • My breathing went up to 96%, and my little itty bitty airways up to 114%!!!!!

I have a few new go to foods too

  • 100 calorie almond packs are still my favorite
  • protein packs, which are by lunchables or something like that
  • peanut butter
  • i keep chocolate covered pretzels on hand all of the time too
  • smart pop popcorn
  • stacy’s pita chips, sometimes with hummus

Obviously, lots of ups but I’ve definitely had some side effects due to Kalydeco, nothing that I can’t manage through though.

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