Three weeks ago when I ran out of my supply of Kalydeco my life took yet another turn. I'm starting to realise that it was a 'wrong turn'.
I had forgotten how restless the sleepiness nights were, the constant state of exhaustion, the breathlessness to walk up a flight of stairs and a feeling as if someone had poured concrete into your lungs and it was beginning to set. I had simply forgotten the everyday battle that Cystic Fibrosis relentlessly forces upon you day after day after day. After previously experiencing all of these things for a gradual 22 years its actually amazing how the human brain can forget and block out such profound and long lasting physical and emotional feelings. It's not as if I can't cope but what is so unique about my experience this time is that I know what it feels like to not suffer, I know what normal life feels like, I know what my solution is, trouble is….I just can't access it anymore.
So here I am, back in the same position I was in 18 months ago with no Kalydeco and a shitty pair of lungs. My lung function has dropped from 80% to 66% and boy can I feel it. My severe reflux symptoms are back and I am forced to sit up right to even attempt sleeping. Running and exercise is a real struggle followed by huge coughing fits ( I'm sure my Zumba instructor is starting to wonder if I've caught The Plague or something!!)
I feel extremely frustrated that this issue is still pending with what feels like no progress towards an agreement between the Australian Government and the pharmaceutical company. Its extremely frustrating to live in a country that promotes it's self to be so incredibly affluent and advanced yet be one of the only developed countries in the world that doesn't have access to a life saving drug. I can write blog post after blog post, speak to journalists, TV presenters and radio hosts about all the adverse affects that I have experienced being OFF Kalydeco but in the end it all comes down to politics and business. What infuriates me the most is that the government and tax payers are already spending significant amounts of money on people like me everyday. I along with other patients eligible for life saving drugs are continuing to be a burden on the current health system. We take up hospital beds, resources, nursing staff, doctors, equipment, medication not to mention we are not working. I want to work, I want to be a contributing member of the economy and society. I want to pay taxes so we can live in a country that has a sustainable health system to help people in need. I am being denied of a healthy and successful future because two groups of people can't come to an agreement. Day after day I am told "it is a matter of process…" , but how does this help me? It doesn't. Because everyday they can't make a decision is another day of struggle. Its another day I and many others suffer when we shouldn't have to.
This still comes up on my phone :( ….