I’m on day 19 of Trikafta. I remain speechless so many times, (yet I also have been informed I am more talkative sorry not sorry), have had a few emotional break downs, and unending gratitude in my heart for what is happening. Trikafta continues to baffle me, leaving me thinking repeatedly “how is this real life?” My days no longer feel as numbered. My soul feels awakened with the hope of what is to come. I didn’t think I could feel this way. It is a magnitude to take in.
My body is changing. How you ask? My skin appears healthier, more visible color. When I sweat, however, I stink. I mean, REALLY stink. An odor is emitting from my pores that leaves me laughing and gagging. I invested in a clinical strength deodorant this week! We shall see if it works, haha! I am no longer losing what always appeared to be enough salt to fill a shaker after a workout. When it comes to salt, it’s been a part of me that I have identified with. Salty. I thought perhaps the salt loss was all together gone and my heart sank. I have some issues, I know. The other day after a run, I saw a few salt crystals on my ankles and I breathed a sigh of relief. But I am not seeing it around my temples anymore, on my face…where I typically sweat the most and that is just not the usual. And good. So good. This means I am no longer losing sodium like I did typically during exercise. Which means more energy. Which means better workouts. Which means overall goodness. I am seeing this, loving it and so thankful.
I continue to feel rejuvenated throughout my day. More energy. Laughing longer. Not coughing during my laugh! Singing louder and hitting high notes that before my voice would become raspy and give up. I wake up and sing! I’m not short of breath. And I dance. I love to make up songs as I sing, which is annoying to some. I am testing my voice and I love it. My voice is stronger. I’m talking more. There is more air entering and exiting my lungs so therefore, if you don’t wish to hear me, well…you’re just out of luck. 😉
I’ve been going to a chiropractor since 2013 for my posture, degenerative arthritis and for my overall well being. Furthermore to benefit my health and body for exercise. My beloved chiropractor, Dr. Jayme Gawith at Wellness One, has been amazed at the changes within my structure since I began Trikafta. He is noticing during adjustments that there is less tension in my body. My ribs are no longer needing adjusted! He informed me today he no longer has to apply such strong pressure. He has been speechless, and sharing in my emotions at how this medication is working. Not only is it affecting my lungs, it is impacting my joints and structure in a remarkable way. It is …crazy amazing.
I stated earlier I’ve had a few emotional break downs this past week. These are happy tears. My lung function this year alone has been nothing but a roller coaster. Added new inhaled antibiotic in March. Trying to target particular bugs in my lungs. I saw some numbers this year that scared me. I began having anxiety before and during a pulmonary function test. This doesn’t help and can contribute to the outcome of the test. My doc has even been astonished at times as to why I declined. He also assured me by looking at the history of my pulmonary function tests over the past decade. It revealed that overall, I have remained stable. Added affirmation that exercise is vital and crucial for my lungs and health. As is doing all of your medications, treatments and therapies.
Today I have a CF clinic appt. It is a follow up previously scheduled. I am nervous, excited and will be feeling many emotions. The last time I had a pulmonary function test at clinic it had dwindled down again to that number that I didn’t want to see. I am anxious to see how all things go and discuss with my doctor the results. Even if I maintain, I’ll be on cloud nine. That is my hope. We will see.
Returning to my emotional moments. I’m currently training to run another half marathon early Spring 2020. I’ve been so excited about this particular race. Since Trikafta, I’m able to take deeper breaths, and not feeling as short of breath during a run. I am able to run a bit faster. I feel like my legs cannot keep up with my breathing! I am not having to stop to cough, work to clear my lungs, catch my breath, and then when I’m ready, continue on my way.
On Friday last week, it was cold, drizzly. Perfect day for a run. I am wanting to run in the cold. I love it. I didn’t used to love it. Now, my lungs are able to manage the cold with more ease. I completed my 5 miles that day. I returned home, grabbed a hot beverage and soaked in the tub. Then, it hit me like a freight train. I didn’t cough. Not one time. How? It was cold. I breathed harder. I felt so alive. But I should have coughed. For the first time ever in my life, I had just ran without coughing. The tears came. I let them fall. Tears triggered by an experience in my life I never would have imagined. All of my emotions in that instant came to the surface. This drug. I didn’t cough. I just ran. I didn’t even cough afterwards. What does this mean for my life? This cannot be. My lungs feel stronger. I’m breathing easier. My workouts are different. I want to go faster. Push myself more. See how far my limits can exceed in a way I cannot explain. What does this mean for me, for my fitness goals? I don’t know. But my heart is so happy. My quality of breathing feels vastly enriched. I want this so much for all of us living with CF!! If my lungs could smile, they would. Thank you Vertex pharmaceuticals and all the research funding made possible for this life changing modulator. Thank you Trikafta for giving me all the air. I can’t wait for new adventures ahead.