Saturday, June 9, 2012

A new lease on life...

I have been so amazed and humbled at the amount of interest people are taking in my Kalydeco diary blog. I honestly didn’t think people would really care too much for the gory details of my life and in particular my health.

It’s funny, people ask me daily “how is your new drug going?” and I find this question extremely hard to answer. I cant tell people that I’m coughing less because I’m coughing more and I cant say I only have to take 2 tablets a day because I still take 40+ a day and I cant say I’ve gone from a size 6 to a size 10 cause I haven’t put on any weight at all… BUT I feel AMAZING! This does sound quite contradictory but I honestly can say I have never had this much energy and stamina in my life!

It’s hard to explain to other people how Cystic Fibrosis affects a person. Obviously you can explain that it clogs the lungs and pancreas with mucus but the problems lay so much deeper than this.  I suppose the best way I could explain my health is that it’s like playing dominos. When my lungs are infected I loose weight, I loose weight because my body is taking so much energy to fight infection. When I loose weight I feel sick and I feel sick because my liver isn’t working properly and when my liver isn’t working properly I’m tired.  When I’m tired all I want to do is sleep, but I can’t sleep because I can’t stop coughing and when I can’t go to sleep I can’t recover and the cycle just keeps going around and my health just keeps getting worse. It’s like Kalydeco has finally broken the cycle. Yes I am coughing more but my lungs are not infected. It’s like before my lungs were coated in thick sticky honey and it was hard to move the mucus from the sides of my lungs but now it’s like custard and it moves around a lot easier. Suddenly my body doesn’t have to work so hard to keep everything going and all the other problems don’t seem so prevalent and it has given me a new lease on life!!

Firstly, I can FINALLY sleep laying down, do you know how exciting that is!? I am able to get full nights sleep and I wake up well rested and ready to tackle the day. I do still have massive coughing fits in the morning and I wouldn’t say I wake up feeling like a can breath easily but the coughing fits move on much quicker than they previously had before. I am starting to wonder when on earth I’m going to stop coughing up so much disgusting mucus though??

For those who know me (especially my mother) will tell you that I ALWAYS like to over do things! I’m always over committed, over ambitious and over loaded with work, Uni assignments and social life! This week in particular has been a huge week to say the least in terms of primary placement, uni assignments and work. I have currently been completing my primary placement 5 days a week (8am-4pm) and running my photography business after school. I found out this week that I got booked on some really big and exciting photographic campaigns and this has really started to put the pressure on me. Normally I would be completely and utterly exhausted with these huge commitments but I’m better than ever. Normally I couldn’t go through an entire day without sleeping in the day for at least 3 hours, normally I would feel nauseas and loose my appetite and normally I’d be in hospital on IV antibiotics…but I’m not, I feel great!  

Its another big week ahead but I'm feeling really excited that for once I can finally keep up with my busy life without my health holding me back. 

A.P :-) xx


  1. Hi there Alex! Your mom gave me the link to your blog. I am so excited for you. :) I have been on Kalydeco for about 2 1/2 months now and it's awesome!!! (Although I haven't achieved sleeping laying down yet... I am still propped up on my 6 pillows!) I'm excited to follow your further progress.

    Also, I curate a blogroll for CF bloggers ( I would love to add yours if you would like me to! I'm ALWAYS excited to find more Kalydeco stories.

    1. Hi Cindy-
      Thank you so much. So glad to hear that you are benefiting from Kalydeco too!!
      Yes please feel free to add my blog to your blogroll.

      A xx