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.
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.
"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?
ReplyDeleteDrug 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
DeleteFor 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
ReplyDeleteHi 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
ReplyDeleteHey...you havent checked in for a few months, everything ok?
ReplyDeleteHi ALl- Yes im fantastic!! Sorry i haven't written for a while I've been so busy! about to write a post now!
ReplyDeleteA :)