TRIKAFTA!!!

 

November 6th, 2019 I swallowed my first dose of Trikafta!!!!! I have felt every emotion, some I didn’t even know existed. We have waited almost 40 1/2 years for this moment! 

Heres to hoping for a prolonged future, the chance to take a deep breath with ease, and ditching this damn leash... a girl can dream and I am dreaming BIG!!! I have really high hopes for this drug. I am putting every single egg in the basket and really it’s because I don’t have any other choice. I think it’s ok to want big changes and to want them instantly. But in reality I think it will take time and my continued hard work and determination. Trikafta has a lifetime of disease and damage to work around and I just have to remind myself of that.

I can’t help but feel excited and nervous, I am hopeful, and I am beyond grateful for the opportunity to take this drug that I have been waiting my whole life for. It does come with a heavy heart knowing that I have friends who need it now and don’t have it yet, and that I have friends who don’t even have this as an option. I see you guys. I love you guys. I promise you right now that I will NEVER stop fighting until everyone has a chance at something like this! When I say ‘Until It’s Done’, know that I say it with all of you on my mind and in my heart.

Today as I swallow my first dose I will be focused on visualizing a positive outcome with minimal side effects. I want to be able to live fully each day and not just survive. Im envisioning stronger lungs and deeper breaths. 

I swallow this first dose for all who have gone before me, my special angels watching over me that I can’t help but feel had a hand in all of this. For my family and friends and everyone who has gotten me to where I am today. Thank you! This is for all of you! I have to quote my friend Gunnar “I am holding in my hands 30 years of cystic fibrosis research, millions in fundraising, hundreds of thousands of volunteer hours, and tens of billions of dollars of drug development funding. It’s surreal.” I am incredibly grateful! Breathe out Love! Xo❤️

3 Months on Orkambi

**Orkambi update** 

"On particularly rough days when I’m sure I can’t possibly endure, I like to remind myself that my track record for getting through the bad days so far is 100% and that’s pretty good.” 

I did it!! I made it to the 3 month mark on the full dose of Orkambi! Phew... This med has been really tough but I think I am finally seeing side effects subside. Really the only thing I still experience is that dang shortness of breath and my right lung is still having this random popping pain. Everyone that I have spoken to that is on Orkambi has said after 3 months they started to see side effects subside and some positive results. So I'm hoping that is the case. I have been having some really good days where I don't have and side effects, and then of course I tend to over do it on those days and then I need a couple days to recover. I can always tell when I over do it because that is when that pain in my lung is the most painful. So looking for a way to balance it all out.... Baby steps!! 

I think it's still really hard to tell any changes maybe because they are all happening gradually. This last week I have been getting out mucus plugs from my lungs, which is HUGE! They are basically petrified mucus plugs dark and harder than a rock. Who knows how long those have been down there?! Of course I took photos and if you didn't get a text from me of my petrified mucus that was the size of a watermelon seed well, you're welcome. ; ) Ha ha. So fascinating and definitely worth celebrating!! Definitely a great step in the right direction. 

My next appointment is in March and I'm very hopeful things will be great. I'm excited to see what I will blow, but don't want to focus on the numbers too much. I'm just focusing on each breath I breathe, how I feel and how far I've come rather than how far I have left to go... Literally one day at a time! 

Breathe out Love! Xo❤️

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❤️

Approved!!!

I have been waiting for a day of this magnitude for quite some time.... I am beyond grateful. Today's news for the CF community brings many emotions but most of all happy tears, I am so happy for all those who will benefit from Orkambi. I am grateful for all involved to help make Orkambi possible including the patients who were in the studies and for the patients who went before the FDA in May to tell their story. We are SO close to that sought after cure, but the reality is we aren't there yet. We need to continue to fight and fight hard! I will not stop until everyone will benefit from a drug of this kind, or even better when headlines read CF stands for CURE FOUND! 

Breathe out Love! Xo❤️ 

Exciting News for Cystic Fibrosis

Super exciting news to wake up to yesterday morning!! The buzz on my social media feeds was and continues to be excitement and celebration.

I always say, Keep your hopes high and dreams big. This is a GIANT step in the right direction, a game changer for CF as we know it! I'm excited to be here today to see what amazing changes are on the horizon for CF. 

Thank you vertex for helping make my hopes and dreams a reality, and to all of you who help fund this research thank you.... Might heart is FULL!!! 

Breathe out Love! Xo ❤