Friday, June 1, 2012


Sooo it's been 2 nights, 1 day, 1 morning and 6 doses and I don't feel that different. I keep waiting for something dramatic to happen but it's proving to be a bit of an anticlimax!

All my beautiful family and friends keep calling and texting me asking me how I feel. I want to tell them 'I'm completely cured' but I have nothing exciting to report! My grandfather called me from London (he is on holidays) to see how I was going yesterday. When I answered the phone he sounded so excited and had so much hope in his voice. I burst out crying when I had to tell him I didn't feel that different. He reassured me that its only been a short while and it was sure to start working soon. Obviously I knew that I wouldn't feel better instantly, it's just been such a huge lead up and I've had such high expectations and I just want to feel better NOW!

I've still been waking in the night coughing and my lungs have been quite tight. I've got quite a husky voice at the moment (contemplating starting a career in radio with a voice like this! ha!) and I'm not sure whether its the tail end of a cold or the Kalydeco working its magic.

My lungs were hurting yesterday...they sort of ache as if they are tired and very irritated.

Today I'm at Monash Medical Centre having an 8 hour Iron Transfusion through my IV PICC line. I feel like I'm annoying all the other patients on the ward with my persistent loud cough. Luckily they gave me a bed today so I've just woken up from a little nap. I was woken up from heaps of coughing and much more mucus was coming up. **Warning** grossness coming up... I was coughing so much that I projectile vomited into the bin. I like to think I'm pretty talented at making it to the toilet during these kind of dramatic events. When the nurse comes in to see what all the commotion is about I had tears streaming down my cheeks- not because I'm sad just because I feel like Ive just run a 10km run. I'm all good now though! My nose is starting to run, as if someone turned a tap on in my sinus...apparently this is a good thing and means Kalydeco is working.

Not much else to report for now but I'll keep posting as stuff starts to change.



  1. Sounds like its already started working! good luck hun! im hopefully starting mine in the next few weeks! and im hoping it really helps me as im waiting for a lung transplant and my lung functions 19% will be following your blog! iv got a little blog too its xx

  2. Hi George! Thanks for your comment! I wish and hope SO hard that you can get Kalydeco ASAP and that it lives up to all it promises!!! I'm finally starting to feel the effects of it now and its only been 5 days!! :-D
    Thanks for sharing your blog- its very insightful!
    I've got my fingers and toes crossed for you lovely!!