Thursday, 8 November 2012

Keep Kalm and Kalydeco

Warning: This blog contains really gross details!! I'm not proud of it... but at at same time I am (?) What have you turned me into Kalydeco!! It's just not Audrey... *sigh

First dose: 11 a.m. I bought full fat yogurt with wild berry topping to eat it with, because you need fat to make Kalydeco work. As I opened the lid, it spilt all over my Alannah Hill jacket ($17 dry cleaning bill...I know right?! rip off!) Anyway... so I took my Kalydeco... anti climax! It's such a quiet action, 'swallow'... we pursued this moment, thought about it and finally here it is!

It felt oddly 'normal' (is that an oxymoron?), and guess what? That's the way it should be! 'Normal'!!
So I took it... waiting waiting waiting ????... then ever so quietly, gradually; it began. My chest felt very 'wet', lots of  noisy wet sounds. To cf people, you'd know it to be like taking double pulmozyme and hyper tonic saline all at once. Not painful or dramatic. Just really wet! I coughed up a fair bit and then I coughed up a very old looking bloody plug. I called my Doctor immediately (at 9:30pm! Thank you Jude for always taking my calls!) She said keep an eye on it, if the bleeding gets worse come to emergency dept, but otherwise it's a good sign Kalydeco is working... it's WORKING!!!! I was so happy to get a reaction. My lungs didn't bleed anymore and my chest continued to clear. I must add, it was not nearly as bad as I had expected, very gradual. The next morning I was afraid of a massive coughing fit (as usual) but was surprised at how easily everything coughed up. Very easy and not out of control fit. This was at the time THE worst part of my day! What an apsolute RELIEF!!! Even if this as all Kalydeco did for me, I'd be happy. Within a week of starting I hardly had a productive cough and was sleeping through the night. My appetite began withing the first day, I put on 1kg in the first week. My energy gained back rapidly, as soon as I could eat it improved. Before Kalydeco I was on tremadol for back, joint, muscle and stomach aches, and frankly to dull my mind! It took the edge of the stress within 20 mins of taking it I felt my issues wash away, it's could be very addictive for the wrong person, no doubt, but I didn't need tremadol (pain killer) from day one, or ever since!
A bit left of field to what I expected, because I've never seemed to have sinus problems before. I got smell like a hound dog, trust me with four boys you need a good sense of smell! Anyway, a day or so in my 'throat' started to burn, it was right were you sinus reaches your throat. It got worse and worse, couldn't swallow big things or talk much. I thought the worst: side effect! The next morning it was much worse, but I push through the burning, sucked back or down and to my surprise it was a HUGE plug of hard old mucus, at least an inch long and the base was like a 10c piece, who new?! The burning and pain subsided instantly. WOW!! The next morning, the same process started again and then eventually another plug was dislodged from the other side! This continued for about a month until everything was cleared out. Kalydeco is amazing!! The journey had begun, it was my biggest "reaction" to start with. Better out than in!!


  1. AMAZING!! WOw..I'm blown away by how amazing this drug is for those who are blessed to use it. So completely happy for you. Please continue to share your experiences. How long have you been taking it now?

    1. Thank you Carrie! I've been taking Kalydeco for 6 months now. Continue to be astounded daily... I'm very humbled and profoundly grateful to be able to take Kalydeco. I anticipate the day when all CF patients get thier respective Kalydeco. It will be an incredible time of our lives. Until then, I'll continue to beat the K drum!!! xox

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  2. WOWWWWWWWWW!! I totally want this to happen to me. This is AMAZING. Thank you for not being afraid to be graphic, because I wouldn't know how awesome this drug is!

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  4. Thank you Lizzi!
    I hope they make a 'Kalydeco' for everyone's gene type asap, then you'll have graphic stories to tell too!haha! Can't wait! Look after yourself, thanks again! xox