Saturday, 3 November 2012

Genetic Jungle

Hands up, who's not really scientific?... ME! Although I comprehend it fine, science has never been my strongest interest. By life's course I have been thrown in the deep end of one  l o n g  science lesson! Sometimes it's like an outer body experience,"Wow! Is my brain actually absorbing this right now?", I'm certainly not naturally that way inclined!
KALYDECO (For none scientific people) is a light blue tablet that actually makes you feel better!
For all the science buffs out there (and I really do appreciate your aptitude!), I'll have to point you in the direction of my friend Genevieve has an incredible knowledge of all things CF and Kalydeco! She explains everything for us non-science people in an easy to understand fashion. Thanks Gen, I don't know how you do it!!

Here are some basic facts about Kalydeco:
* It corrects CFTR function
* People need to have at least one copy of G551D for it to work best
* Two pills a day
* It improves lung function
* It improves digestion
* It's not yet on Australian government PBS, but that process will start next year
* Vertex (drug company) are working on and trialing new drugs as we speak for other CF mutations (so relatively speaking, it's not far off!)
* There is a Vertex compassionate program avalible in Australia for G551D patients who have FEV below 40% or who also have other serious health issues. It's called the 'Named Patient Program'. If this applys to you, Please ask your clinic about it! If you don't know your CF gene mutation PLEASE get tested. There are so many meds in the pipeline, it's vital you know what will help you. Keep your fingers on the pulse!

Personal progress: My mucus production has dropped by at least 95% and I hardly cough anymore, no more coughing fits!! My FEV1 or Lung Function was 40% when I began taking Kalydeco 6 months ago  (briefly peaked to 65% but due to asthma droped.. I'll explain later) now it's sitting on 54% !! This was an impossibility before Kalydeco. I was advised by my doctor that a lung transplant was the next step, within a couple of years (not anymore!). The other incredible change is my weight. I am now absorbing my food and have a normal (to big) appetite, almost no enzymes (only if I have a heavy meal at night I have a couple). Before Kalydeco, I was never hungry and only ate what I could tolerate, otherwise I'd have a coughing fit and throw up. I was 41kg and now I have a perfect BMI and weigh 53.2kg!! Colds and Flu came and went this winter without an admission or IV's. I only have taken Cipro (antibiotic) once since starting K. I sleep, eat and have energy to do normal everyday things. I'm still in shock!! Words cannot described how much better I feel and I'm getting stronger as time go's by, as opposed to getting weaker as I was before Kalydeco.
Save the best scientific evidence for last! The Sweat test: This is the test that determines a CF diagnoses. You get a number according to how much sodium chloride level is in your sweat. A normal persons score is under 30. A person with CF is 60 and above (in between in considered boarder line). Mine was 86 before Kalydeco... now it's 46!!
Only in my dreams did I think this could happen. xo

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