Friday, September 25, 2015

Orkambi



Although it may not be easy, there are times  where you just have to be okay with not knowing what will happen next... 

For the first time in a long time Orkambi gives me hope. Hope for a prolonged future, and hope that maybe I can live just a lil bit longer. I still have a lot of things I want to do here... I love my life. 

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 are all questions I ask myself all the time. 

I have asked so many questions and I have read countless stories of everyone who has started Orkambi before me and the truth is everyone has had different experiences. We just don't know the answers to all of my questions because we simply won't know if Orkambi will help me until I give it a try. 

I have lived a very blessed life, having the opportunity to take this drug that I have waited my whole life for is just one more blessing I can add to my very long list. I am happily grateful for everything life has thrown my way and beyond grateful for all of you. I'm not sure if I have ever been more nervous about something, so if you have time or if you think about it if you could send some love, positive vibes, prayers or anything in between my way it would be greatly appreciated. 

As I swallow my first dose on Wed Sept 23, 2015 I was and continue to be focused on visualizing a positive outcome with minimal side effects. My heart is filled with hope that I will come out on the other side of these next couple weeks with stronger lungs and deeper breaths.... and most of all hope that I can stick around here just a lil bit longer. 

Sending you all so much love and from the bottom of my heart thank you, thank you, thank you for your continued love and support, you truly keep me going! So here we go.... Cheers to Orkambi and getting some answers to all of my questions. 

Breathe out Love! Xo❤️

2 comments:

KCF said...

Good luck! --mom to a foster daughter (21 years old) with CF

Amy Braid said...

I hope it is working for you!!! I start October 13th!!!