Sunday, November 4, 2012

A reflection...

Imagine you just woke up with a cold. It’s not the worst cold you’ve ever had but it’s enough to knock the edge off you. You feel congested, tight in the lungs, your nose is blocked and you feel really lethargic. Imagine you’ve also got a stomachache, you feel bloated, irritated and uncomfortable. You lay in bed feeling sorry for your self, hoping that it will pass in a few days and you can go back to doing all the things you want to do. Now imagine someone told you that your cold and stomachache were permanent, that it was never going way. Imagine that they told you that it actually was just the beginning and it would most likely only get worse. Imagine this is now your ‘normal’ state of being from here on in.

It’s not unbearable and you’re not in a huge amount of pain but you’re now burden by your body no matter what you do everyday. You wake up every morning struggling to breathe because you have so much mucus in your body and your tired cause you haven’t slept much because your coughing kept you up over night. You’re not hungry but you know you have to eat because you’re already underweight from the stress on your body. You feel nauseas after you eat and you’re stomach is even more upset than it was before. You force your self to exercise in hope that it might just move the mucus from your lungs and make you feel better. Slowly your cold and stomachache gets a little worse each month. You realize that you can’t keep up with your friend’s busy social schedule and work is becoming overwhelming. Imagine your cold and stomach ache now requires IV antibiotics on a regular basis because the oral medications just don’t cut it now. You’re falling behind at work because your constantly disrupted by the hospital admissions and you begin to loose touch with some friends who can’t cope with your ill health. Your dreams seem to be getting further away as your health begins to consume your every movement and every thought.

Imagine one day someone told you they could give you 2 little blue pills a day and all your suffering would almost instantly stop. Imagine they told you that you could go back to waking up in the morning with energy, that you could stop vomiting from coughing and you could simply breathe easily. The pills would relieve you from your stomachache and your lungs would no longer feel congested. They would make you feel like a new person and you could finally say you felt healthy again. Your dreams start to become a reality and you go back to living a normal, energetic and fun filled life. Your family and friends could stop worrying about your declining health and you could finally start living life the way you were meant to.

This is what happened to me. This is what happened to me the moment I started on Kalydeco. It’s not until now when I sit and reflect that I actually realize how fast my life was sliding on a downward spiral. I can honestly say without a single hesitation that this drug has changed my life. I’m not angry or resentful I was born with Cystic Fibrosis because without it I wouldn’t be the person I am today. I’ve always had big plans and big dreams and I have always been determined to never let Cystic Fibrosis stand in the way of anything I set out to do in life. Whilst I was determined and I never lost sight of my dreams the reality was that Cystic Fibrosis was pushing them further and further away.

After moving out of home at age 18 to study and pursue a career in photography I found my self-questioning my future at the beginning of 2011. I had dreams of travelling the world and becoming a renowned and respected photographer but after a rapid decline in health these dreams seemed more like a fantasy rather than reality. At age 22 Id worry on a daily basis about whether Id actually get to do all the things Id wanted to do before I died. I’d worry that I wouldn’t get to see all the places I wanted to see because travel was too straining on my health, Id worry that I wouldn’t get to live life to my full potential, I’d worry that I wouldn’t get to raise a family or grow old to see my children grow up. Since starting on Kalydeco it’s like all of these worries have lifted and I feel as though anything is possible. I’m not even really sure how to put into words the gratitude I have for all the people that have helped develop such an amazing phenomenon. 

Kalydeco is more than just a drug that allows me to ‘breathe easily’, it gives me the opportunity to live my life to it’s full potential, it gives me back my happiness and it gives me back my future.


  1. "Kalydeco is more than just a drug that allows me to ‘breathe easily’, it gives me the opportunity to live my life to it’s full potential, it gives me back my happiness and it gives me back my future." ...for how long? Are you saying this is a cure or short-term relief?

    1. Drug endurance so far has been demonstrated through 90 weeks. The comparison has been made that Kalydeco is for CF patients what insulin if for diabetics

  2. It's so amazing to read about your experience with Kalydeco. I started with it two weeks ago and I also feel already better...

    I wish you all the best!


  3. For what its worth, my son Dean has been out of the hospital for 13 months now(9 after. Kalydeco) and has packed on some 36 pounds and 2 inches. Clinic is on Tuesday, ill let u know pfts

  4. Hi Alex, thank you for writing and sharing this. It is truly brilliant. I live in the UK with CF (dF508 flavour) and I identify with a lot of what you say here. I hope you continue to feel the benefits of Kalydeco and that you find time to keep blogging! Best, Oli

  5. havent checked in for a few months, everything ok?

  6. Hi ALl- Yes im fantastic!! Sorry i haven't written for a while I've been so busy! about to write a post now!

    A :)