I used to be lost. Lost in the daily grappling fear of will my lungs stay strong for me today? Will I spend today coughing, struggling to live all the while inhaling this beautiful life? Will I wake up tomorrow choking on mucus? Will each step and breath when I run burn within my lungs? I may appear strong, but the truth is, we all have fragile stages in life. There have been moments where I admittedly wanted to give up. Thankfully they were fleeting, but I have learned it is healthy to acknowledge they existed.
Before I begin, I wish to express to each of you reading I am not choosing to share this part of my story seeking sympathy or commendation in any form. My hope in sharing is for those of you also living with CF, or any other chronic illness, or going through struggles, to always know you are never alone. We all fight personal battles, health-wise, physically, mentally and beyond. Sharing our stories may offer peace, comfort, reassurance and encouragement to one another. I am eternally grateful for the tough times, in the end they make me stronger.
To paint you a small snip-it in the big picture of things, Nov 2017 my lung function was drastically higher than it is now. The following month, a sudden onset of pain in my lower left lung hit like a ton of bricks. A constant stabbing, tingling pain. The best explanation? It was as if many needles were playfully poking my left lung and rib. Taking in a deep breath was a struggle. After many years of dealing with all we encounter, and those unexpected encounters, I knew this was vastly different.
My lung function thankfully remained astonishing, which was a blessed mystery given how I felt. I, along with my doctor, hoped it was just an extensive muscle strain from coughing. I will not go into the details of all the back and forth Dr. visits, tests and such, but on my 42nd birthday I had the joy of a CT of my chest and abdomen, with and without contrast scheduled. I wanted detailed answers. Chest x-rays were not adequate enough. Five weeks of a continuous IV antibiotic shortly followed with the words “nodule” and “pneumonia” and “pockets of mucus all throughout your lungs.” As well as “give it time.” I was able to do this IV at home always hooked up with the medicine flowing. I honestly didn’t care, the IV didn’t bother me, I just wanted the pain to end. I cried myself to sleep many nights asking God to take it away or take me away. I felt the lowest I’d ever felt health-wise, defeated and after 3 weeks of this potent antibiotic, the pain remained. Why? I hated my left lung, hated Cystic Fibrosis and hated how the progression of it had caused multitude of damage to my airway passages. That is the reality of CF.
After 4 weeks, the pain lifted a bit. Not completely, but I finally had some relief that I was begging for. When physical pain causes suffering, it consumes you. Anyone who has dealt with any type of physical pain, be it from illness or injury, life as you know it drastically changes. You continue on, because you’ve been trained to do so, but you also wonder how much more of this can I take? Is this ever going to end? The saying “pain is temporary” kept playing like a broken record in my mind during those 5 weeks. I believe pain also nourishes courage. I remember specifically during a phone conversation with a dear friend of mine, (who also has CF) telling her “I feel like I must go through this suffering to get to whatever the other side of this is…things have to get the worst of the worst before I will feel any ounce of better.” I can’t explain why I felt this way, but it deemed true.
Once I completed the longer than I’ve ever been on IVs, IV course, I gradually began to feel more like myself. After many consultations and CT follow-ups, the main determination was with the significant scarring / scar tissue my lungs have accumulated from years of damage, and chronic inflammation along with having pneumonia, all contributed to inflicting the severe pain. But why other times when I had been sick, I did not experience pain like that? Just goes to you show you how CF is relentless and so unpredictable. It was also discovered I have knots between my ribs in that exact area. Physical therapy and massage provided some reprieve. I still am baffled by the magnitude of it when it hit. Will it happen again? Yes, and it has. And it will. Trikafta will not dissipate years of destruction CF has created. Now, when an infection feels it’s attacking my airways and the pain returns, it is a warning. Always trying to look on the bright side of things. Doesn’t mean it’s easy. Since this situation came to light, excruciating as it was, it has given me stronger determination to never stop, come hell or high water.
As I recall those times my lungs experienced sheer agony, times I was crying out in pain and wanting to tear my left lung out of my body, I must smile and return to the point of enigmatic gratitude. I smile with the realization of where I am now. Each day remains surreal. With each breath, I presently feel this sense of tangible certainty within my grasp along with the beauty of hope for aging while living with Cystic Fibrosis. I have found in this new “normal” life since Trikafta to continue humbly embracing the changes. Many things feel like a trade off. I’ll happily take a few belly aches here and there, my legs screaming “Woa there missy, wait up for me!” during a run and transformations of certain parts of my body (haha!) for how my lungs feel. My body now is trying to catch up to my breathing. How? This isn’t what I’m used to. But I love it. My heart and mind feel an irreplaceable serenity, in the physical sense. Anything can still happen in the blink of an eye. But oh how I’ve honestly speculated my outcomes were permanently unpleasantly designed for my days to come. Those cloudy thoughts are slowly fading, allowing some sunshine to come through.
In the midst of whatever may come, I choose to cling to the grace of it all. Since Trikafta, I continue to overall feel amazing. Lung pain will come and go but I want to thrive. When faced with unknowns, sickness, infections, misery and feelings of hopelessness, it is so tempting to give in and give up. I believe I am here for a reason. I’ve worked hard to be living, so I have to keep on reaching. Nothing in life is certain. We cannot predict our future. Little did I know back then I’d be on this life changing modulator now. Since Trikafta, I am finding myself again day to day. More alive. I want this for all of us living with CF! In all I do, I am reclaiming the many years of lost breaths from the past with the most passionate fervor I possibly can.
Breathing At A New Pace 