Friday, September 23, 2016

One Year On Orkambi

I can't believe it's already been one year!! I was so nervous to start this drug, there were so many unknowns and so many questions. Although it may not be easy, there are times where you just have to be okay with not knowing what will happen next... 

Having the opportunity to take this drug that I had waited my whole life for was such a blessing. For the first time in a long time Orkambi gave me a glimpse of hope. Hope for a prolonged future, and hope that maybe I can live just a lil bit longer. I had so many questions when starting Orkambi and of course I couldn't help but have some high expectations. 

Will Orkambi be the right drug for me? Will it help me get off oxygen? Will it thin out my very thick mucus? Will I see my 40th birthday? Will I soon need a life saving double lung transplant? These were just some of the questions I had asked myself before starting Orkambi and actually I find myself still wondering these very same things. 

Unfortunately there is still so many unknowns and unanswered questions. I'm still not sure if Orkambi is the right drug for me. It still may take some time to see any type of results with it because of the stage of my disease. One thing I do know though is that this drug has done some amazing things for so many and that makes me very happy. 

On sept 30th the FDA will decide if this drug should be available to 6-11 year olds with CF.... I sure hope they approve it for them. This drug is doing wonders for those with healthy lungs. It could be life changing for these young kiddos, and nothing makes me more happy to envision my lil CF kiddos with grey hair and wrinkles. 

So today as I swallow my morning dose of Orkambi I will continue to focus on this drug working it's magic deep inside my lungs... so deep that we just aren't able to tell quite yet how it's helping me. I'm not giving up on Orkambi, I have so much hope for what's to come.... 

There are so many great drugs in the CF pipeline. I am hopeful that if Orkambi ends up not being the right drug for me there soon will be another drug that will help answer all my questions.... and maybe, just maybe meet my high expectations. 
Breathe out Love! Xo❤️