Realizing Hope : Changing the Unchangeable (Day 2)

For thirty three years I have known nothing but a life with cystic fibrosis. A journey plagued with nothing but heartache and loss. Loss of dreams, loss of lung function, loss of freedom, and loss of life -  figuratively in the sense of my own and literally in the form of my brother and friends afflicted by the disease. I have seen and felt the devastation of CF. I’ve seen the burden it not only places upon those who live within its grip, but also the people whom love and cherish those that live such a circumstance. A circumstance that until now for many of us has been unchangeable. Whose course for decades had been similarly yet uniquely decided, given only the certainty of the present moment while clinging to hope that sustained us.

There still may be no certainty to this life or this body of mine that has been riddled and beaten by CF for over three decades, but for the first time in my entirety, there’s a hope realized in possibility. And that possibility comes in the form of three small pills taken every day for the rest of the days I am gifted. 

What is Trikafta? 

It’s a culmination of brilliance, years of tenacious research, trial and error, and most of all, resilient hope. It’s the fourth drug of its kind for CF that targets the underlying cause of cystic fibrosis at the cellular level, but is the first approved for individuals with just a single Fdel508 mutation. There are over 1,800 mutations that cause cystic fibrosis - manifesting so differently in every unique individual and causing their own set of progressive and fatal complications. Clinical studies in Trikafta showed great promise with an average lung function increase in participants of 14%. While there are no guarantees that all or any of us who begin this journey may know such extraordinary gain, and by no means is this a cure, each of us cannot help but live within the unbridled hope that our lives may know simple stability and the ability to dream beyond today. 

As tears continue to find their place upon my cheeks throughout this emotional journey of gratitude, I remind myself as I start this new day that any and every breath I am given is a beautiful one, no matter the number that fill these lungs. The hope that lives upon every breath of yesterday, today, and tomorrow is because of the life-changing people that have poured themselves into giving every one of us that lives with CF another beautiful breath, and who continue to do so. For each of you I am grateful beyond measure. You are daring to change that in which was dared to think unchangeable and will not stop until we ALL may know such a possibility. Love to you all.

Feeling its Effects - First 24 Hours - It was so special to share the moment of taking my first dose of Trikafta with someone who has been such a significant part of my CF journey and so much more. It's a moment I will hold in my heart forever. Within an hour of taking my first dose, my usually overly dry mouth was anything but dry. For the first time in years I had an abundance of saliva - to the point I felt as if I was going to start drooling. Also, my usually dry eyes which make me feel every blink suddenly were moist with renewing tears. It may seem like a simple thing, but it's pretty crazy to feel the effects of how my cells are changing in real time - for the first time in my life, for the better.




*To learn more about Trikafta visit https://www.cff.org/Life-With-CF/Treatments-and-Therapies/Trikafta/. And to support further research efforts so that all may know such possibility donate to the Cystic Fibrosis Foundation at cff.org