Monday, 5 November 2012

Over the Rainbow... and Moon!

The day finally arrived: K-Day!!
Benjamin and I drove to the hospital together. I was consoled; there was as we emerged from the church on our wedding day, and as on the birth of our first baby, Charles, a beautiful rainbow illuminated the sky. Perhaps a sign from God? (and given these special events were all at different times of the year) maybe, maybe not, but I'd like to hope so...

I was not as excited as I should have been. I was apprehensive, nervous, fearful and sceptical that Kalydeco would be as good as it sounded, well not for me anyway. Too late? I felt so sick. 40% lung function (dropped lower with infection), endless coughing, couldn't eat or sleep. Hours of physiotherapy a day just to try and save my lungs from anymore damage. The vest, zen chi, bi-pap, pep, nebulizer after nebulizer, pain killers and worry... it was simply desperate. I had no energy, left I was so exhausted and yet could not rest. I was driven by my family. Often I thought I could go no further, then I'd hear my boys coming and I'd be 'on'. With the support of my parents, we have protected them from the harsh reality of CF, they've not even heard 'cystic fibrosis' mentioned. They need not worry their little hearts about that at their age and I will do my best to protect them from it until they are older. They know mummy was born with a cough, and now it's getting better! Indeed, I myself only became really aware of CF and what it was when I was in my teens (I'll explain why in another blog). I am SO thankful to my parents for protecting me from that and giving me an innocent childhood. I was not worried about my health as a little girl and simply was looked after and trusted my parents as all children should.

As we drove, my mind raced and yet stood still.  It took 9 months of constant phone calls, emails, letters and consults to be finally approved for Vertex's 'Named Patient Program' (NPP). The NPP is a compassionate program set up for exceptional circumstance's, patients who are FEV 40% and under or have other life threatening health complications. Even still, we needed to get our government and hospital to give permission for access. We were like a dog at a bone!! My doctor said it was our persistence that made it happen as soon as it did. I was the first at my hospital to be granted approval, now there are quiet a few more. We blazed a trail! Unfortunately there are still some hospitals in Australia who are still not permitting the NPP, because of inhumane legal red tape. A fact that makes me furious! But we are working slowly but surely to try and change this. I will advocate persistently for Kalydeco to be available in Australia to all G551D patients, until that day we just have to keep spreading the word and taking action where we can. There is a Face Book group, 'Kalydeco for Australians' https://www.facebook.com/groups/343431685698805/. Please do join an support our campaign! It'll be heating up next year when it go's before the PBAC board, we'll need as many people's support as possible!

My doctor came out to meet us at the hospital cafe, beaming, holding 3 boxes of life changing cargo. Two little blue pills a day. My mind boggles at such a small thing could change my life. I started feeling the difference within hours. My troubles were really melting like lemon drops...

No comments:

Post a Comment