Who knew the impact this medication would have on me in not even 3 months? I remember the first dose, the purge of mucus from my lungs and sinuses the first 24 hours. My energy level feeling like I could climb a mountain effortlessly. The issues of wanting to eat everything I see in sight. It resembles that “hangry” feeling when on prednisone. That actually still holds true. I may or may not need to buy new jeans? We are working on that unimaginable adjustment. Being less salty after a workout or run. I miss my perfect line of salt crystals that used to form on my brow! The return capability of singing allegro vivace and not squeak. To feel the vibrato with my sound and with such clarity! I have missed being able to do that. Waking up and singing that one high, particular long note that used to fade in my voice when I gave it all I had. Waking up and not feeling congested! Do you have any idea how amazing that is for me? To dance between exercise reps, during meds, while cooking, while in the shower, in the car, in the yard (sorry neighbors) or with my dogs (they love it). To dance and sing and not feel winded. My laugh! To laugh without following a series of gasping-for-air-wheezy- moments that literally scare everyone who may witness, thinking you might die. Not a bad way to go, really. She laughed herself to death. Sorry, I can be morbid in my humor. Getting off topic. Laughing without coughing, laughing deeper and with more force as my airways finally feel this long awaited relief. Being able to run without coughing makes me cry quite often. I smile through the joyful waterfall that falls onto my path with each step. Sometimes, I just can’t help it.
All the little things, that many take for granted day to day, mean the most in how my life has changed since Trikafta. There is one colossal difference that adds to everything for my life. The sound of silence. I’ve never known how beautiful it can be until now. And that it prevails. All I’ve ever known is to cough. It’s defined me. It’s identified me. It has been the source of how I feel, the hint of possible infection, the definitive sign when getting sick, the overall factor in all my life. Now, I live in a silence. No coughing. At times I still cough, but it is honestly coughing to cough. Coughing to see if anything at all will come up. Doing huff coughs that simply lead to only expelling air out of my lungs. There are times I see color again. Usually after exercise. I get excited now if I see anything come up. For all my life, I have spent infinite hours of time and energy clearing the junk out of my lungs so I can live. Now, there is this silence upon me. The wheezes have also escaped (good riddance!) Allowing me to live and most of all breathe more freely. It is an indescribable, magnificent, most emotional heart explosion feeling I’ve possibly ever experienced. I never imagined this could exist for me.
The silence that now accompanies me is also displaying its beauty during my most recent pulmonary function test. My RT even noticed, from seeing me a month ago to now. By the way my friends, please give your CF care team love. They are left in awe of the things that are happening for us just as much we are. And equally sharing in our excitement. We are so lucky to have them. During my test, which was a complete PFT (pulmonary function) I didn’t cough once. This alone still gets to me. I didn’t experience any wheezing. If any, it was very tiny near the end. I did not feel exhausted. I felt amazing. This test is typically very exhausting, lasting for an hour, leaving you winded, dizzy, sweaty, shaky and ready to call it a day. Pre-Trikafta, I had declined lung function wise. Numbers do not do always reflect how I feel. They are the facts, but they do not define me. I began this medication with realistic expectations. I have not had a drastic increase in my fev1 outcomes, it has been gradual. I have 44 years of damage that cannot be reversed. My hope has been to gain back to being at what is considered my “baseline.” This week, that wonderful to me number came revealed itself again to me. I wanted to cry. I hugged my RT. I’ve gained 13% lung function while claiming my breaths again since starting Trikafta. I’ve finally reached my baseline. I haven’t been able to since last April. I am humbly thankful beyond words. With this, I am filled with a tenacious commitment and dedication to never stop, keep working hard and then work even harder for my lungs.
The next time you realize you are surrounded by silence, stop and soak it in for a moment. Take a deep breath. Smile. Give thanks for your life. Those of us living with CF, we live in the land of coughing. It is all we’ve known. Trikafa is giving us the beauty of quiet. It is a surreal feeling. It also is allowing us to hear more. To listen to life and all we’ve missed. I don’t know if I will ever get used to it. Will I possibly have a yucky cough again? Can I still get sick? Absolutely. Reminder, Trikafta is not a cure. But it’s giving us more hope, more strength in our lungs and airways, and improving, on numerous certain levels, our quality of life. Leaving me speechless and full of wonderment for what may come. This is why we cannot stop giving so research continues to happen. We need life changing genetic modulators to be available to everyone living with CF. With all my heart, I want all of my CF friends to reveal in the glorious joy of this silence.