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Sunday, March 11, 2012

Day 2 - Kalydeco

Well, suffice it to say that I feel a bit like I'm flashing back to Fall 2006, about 5 1/2 years ago, when I first started taking NAC. (http://noexcusesnoexcuses.blogspot.com/2008/08/nac.html)

It's true, we look for little signs of medication working or for side effects particularly right when we start something new. I took my first dose of Kalydeco right before bed on 3/9 Friday. Here is what I observed:

  • Prior to starting Kalydeco, I had been a bit non-compliant with my green smoothies and felt quite a bit more tight and non-moving mucus-y in my right middle lobe. I would cough but nothing would come up - but I could tell it was there. My FEV1 on 3/5 at clinic was 80%
  • When I woke up yesterday (3/10) AM, the first thing I noticed was how clear my sinuses felt. I could feel air moving in my sinuses where I feel like I've never felt air move before. Like up above my eyebrows - it was almost distracting because it was so different and weird
  • I coughed up pretty watery, much thinner than what I had the past few day's mucus. My right middle lobe felt much clearer
  • I have kind of avoided exercising the past few weeks because it was so exhausting to cough so much - but exercising yesterday was much easier and I could breathe deeper in my right middle lobe. I coughed while exercising but it was mostly a dry cough
  • Today I don't notice as much air flowing through my sinuses, but it's possible that I'm used to it or it was just a fluke yesterday. Not sure
  • I for sure have a plug stuck in my right middle lobe and it's a bit harder for me to breathe in my right lobe today. I am going to try to go for a run later today to cough it up (that usually does the trick) - it will be cool to see how my endurance is
  • I had another feminine side effect that normally I would post here because I'm comfortable posting anything - but I realize that all my readers might not be comfortable reading all I feel to share. Ha. So if you're curious, drop me an email or a PM and I'll fill you in :)

So all in all, some changes that I am cautiously optimistic about. It may be complete placebo effect, but that's fine with me - I feel good, whatever the cause. 

I'll continue to keep you guys posted


  1. Very interested about how this goes. Please keep us updated. I am still waiting for Kalydeco to become available in the UK.

  2. I am also very interested in how this goes for you - glad your doctor is open to rx'ing it for you. Please keep us updated!!!

  3. Amy! Jackie here (your cysticfibrosis.com friend) and I'm interested in every last detail- how exciting! PM me on the cf site concerning the last bullet if you have time :) Also, I"ll be interested to hear how this may or may not affect lung bleeds.....

  4. Did you mention that you are D508?

  5. Mention to who?

    I have DF508..... I am not DF508 :)

  6. Hi! Just wondering how things are going with Kalydeco since your last post.

  7. I will definitely update when I've been on the drug for a few weeks - I want to make sure I give the most accurate and data-filled update :)

  8. I just wandered by after seeing someone post about your Kalydeco experiences. I'd actually really love to know the feminine side effect you had - I'm about to start Kalydeco (for G551D) and I'm REALLY hoping that it could potentially help some of my hormonal issues as it takes a little of the stress off my body. So, I'm very curious as to what you experienced. ;) I couldn't find your e-mail, but feel free to e-mail me (beingcindybaldwin AT gmail DOT com)! And good luck!!! I can't wait to hear more.

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