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!
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!!