The last time I updated I was in the middle of a 2 week (turned into 3 week) course of Zosyn. Without too many boring details I went in afte...

This month officially marks TWO years hospital free!! I can't remember the exact date I was admitted so I am sure I am a week or two ear...

Due to issues with my pharmac y I did not receive my January shipment of Orkambi on time. Of course, I was upset that due to issues with my...

I am not even sure how to explain how impossibly hard it was dealing with Accredo these past few weeks. I think instead of writing a post th...

Several weeks ago I wrote my one year review on Orkambi . I said that I felt it was helping, but did not have the clinical proof to back up ...

This post was incredibly hard for me to write. Like all matters related to CF there was no black and white with Orkambi, for me at least. I ...

Two years ago I tried to get in the Orkambi trials, but after going through all the pre-trial testing I was denied. When I finally received ...

*This is a long version of my experience on Orkambi* This is a post I keep starting, but can't seem to get myself to post. To be hones...

"Maybe we will see a rainbow" my 3 year old shouted with eyes wide at the thought. My dad and I exchanged glances. While smirking...

I am not sure how one quantifies the value of a life. Apparently, some people know the secret equation, but I wasn't lucky enough to be ...

There is a flurry of emotions whirling through my mind. I feel as if I am teeter tottering between every emotion that a human can possible f...

As most of the CF world is probably aware of by now, the vertex drug developed for DDF508 has a good chance of becoming available to patient...