It’s been 2 months since I first took my dose of the triple combination genetic modulator drug, Trikafta. Two months of life changing feelings to process, emotional breakdowns, breathing deeper, sensing more life in all I do with an indescribable gratitude and newfound hope of what is to possibly come. Two months of navigating the outcomes, the affects, how I’m feeling, reaping the benefits thus far, along with repeated questioning times of what is happening to me? How is this real? Is this a dream? Sometimes in the quiet, peaceful moments when I am alone, I close my eyes, slowly inhale in this new life in my lungs…each breath is such a gift. As I slowly exhale, tears often find themselves trickling down my face, releasing a tension within my airways that once used to rob my lungs. My tears derive from various emotions, but mostly from a place of joyful bliss from the depths of my soul with the upmost, humbled thankfulness for life.
In the last week however, a different awareness has caused my tears to cascade like a waterfall. I wonderfully celebrated turning another year older. Birthdays are bittersweet for me. It can be frightening with a beautiful ribbon of hope wrapped around it. As we age, we know are closer to the inevitable. I find my heart often overcome with feelings of guilt. Survivors guilt. A deep sadness with happiness. I wonder at times, why am I still here? Why have others with CF gone before me? Have I done enough with my life?
Every morning I wake up, I think of three things I am thankful for. It is how I love to start my day. Truly my friends, I believe goodness is all around us. It may be hidden in the shadows. It may not reveal itself until a new chapter in your life is written. It may be in the smile you receive from a stranger. A hug from a loved one. It may be right in front of you. If we look hard enough, it is there. On my birthday this year, I began a larger list mentally of all the “good” things. My faith, my family, my friends and my loved ones. My two pups. The ability to exercise. My stamina. My healthy weight. My health. Which brings my focus to how my is health is now. For wonderfully reaching the age 44 and to amazingly feel the way I feel, it still encompasses an unreal serenity beyond belief. If I could write a letter of acknowledgement for what Trikafta has given me, it would go something like this:
You are a wonder drug. Perhaps the closest thing to a miracle. I know, you are not a cure. But you may be the closest thing to one in my lifetime and for so many of us. At this moment, you have given me new life. You are also life saving. I hardly cough anymore. I have little to zero sputum to cough up and out. Even during my therapies. Do you realize the impact that is alone? Thank you for easier mornings. Thank you. Thank you for deeper breaths. Thank you for laughter without coughing!!! Thank you for giving me stronger workouts as I am breathing easier. Physically new pains and aches befall me, but each confirms I am alive! I need the rest of my body to catch up now. I believe in time it will. Thank you for aiding in my lung function. If you create stability in my lungs for the rest of my life, I cannot ask for anything more. Consistency is vitality. Thank you for helping my body combat a cold/infection a few weeks ago. Normally when an infection is attacking my lungs, it develops into something worse. I know antibiotics are and still will be needed. With you though, I feel I have more of a fighting chance in…everything. To possibly live longer. In just these two short months, you have given me tremendous quality of life. Something I never expected now. Is this my new normal? I do not know. I feel a sense of reassurance. Thank you for being the greatest, unexpected gift as I turned another year older. I am indebted to be on this journey with you and eager (with honest caution) to see where you help guide me for the rest of my days. PS- My heart continually hopes you will become available for all, and a new formula for those who are waiting. I can attest, our lives depend on it. Thank you for all you’ve given me.
Life isn’t always easy, we all have trials to face. I certainly try to do all I can and give my all with each day I’m given. If statistics held true from the day my loving parents received news of my diagnosis, I am not supposed to still be living and breathing today. I’ve never believed in those statistics. Maybe that’s why I am still here? Who can put a number on the age you will live to be? I feel one cannot. I know that life is precious and never should be taken for granted. I’ve always believed that. Living with a chronic illness like cystic fibrosis, you learn to appreciate life with all the gusto you can. With each new year I live, the battles and victories, I am delighted for this life. For still being here. For how I feel now. For every single moment I am given. No matter where the path may lead.
2 thoughts on “An unexpected gift of life”
So happy for you, and that all is still going well!
So happy for you and everyone on trikafta. Can’t wait for Sophia and Savannah to get on it. Love the posts