The excitement and flurry around the new combination therapy Trikafta (elexacaftor/tezacaftor/ivacaftor) brought a lot of hope to the CF community. This is a good thing. However, many complex emotions are not being addressed.
Everyone expects a flood of challenging emotions when one transitions from healthy to dying, but what about the other way around? How can anyone predict just how intricate the web of emotions is when someone goes from growing up with an early expiration date to the possibility of a future?
When I first heard the news that the U.S. Food and Drug Administration had approved Trikafta in October, I was at an appointment at the clinic for what felt like the hundredth time that year. I felt elated, then suddenly panicked. So many questions and unknowns flooded my mind.
What if the medication doesn’t work? What if I still feel burnt out after seeing improvement? What if I’m stuck in limbo between healthy and sick forever? How will my relationship with my service dog change? What will happen with my disability application? What if I spent all this time being sick and now I have no foundation built for a future I want?
The disappointment of the previous two gene modifiers was the root of my stress. I watched the CF community celebrate while simultaneously seeing my life wither away. Luckily, Trikafta brought me a 10 percent increase in lung function and a stability I previously could have only dreamed about.
The strangest feeling I’ve had is the mourning of my past life. I never thought I could miss the hospitals, oxygen, and IVs even a smidge. It was a familiar way of life. Every once in a while, I’ll feel that tinge of sadness. But it passes quickly once I move on to doing all the activities my lungs are now capable of.
Now, let’s talk about survivor’s guilt. I was driving to work recently when “Don’t Give Up On Me” by Andy Grammer (yes, the “Five Feet Apart” song) came on the radio. Suddenly, I felt tears running down my face. For context, I am not a crier.
I had just taken my dogs for the longest walk I have taken in years. My lungs felt so unburdened by the simple task of breathing. Then, I felt guilty that my childhood cystic fibrosis pen pal would never get to experience such ease. We shared endless conversations dreaming of a treatment like this. Those conversations would always end with doubt to make sure we didn’t get our hopes up too high. Yet here I am.
This monumental achievement our community has fought for over the last few decades has unlocked dreams. Until a few months ago, I was in a sort of survival mode. I had dreams and goals I wanted to achieve, but the knowledge that those could change at any moment was always in the back of my head. Now I feel like I can finally allow myself to dream to my heart’s content.
I’m sure I’ll never fully be able to encompass the sheer depth of emotions I’ve had over the past few months. I would like this to be a reminder that we are all complex. It’s OK to have reservations mixed with happiness. Change is hard, even if it’s life-saving.
» Follow my journey at “The Living, Breathing Wendy.” «
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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