By the time I was 26 years old, it had become abundantly clear that the standard two weeks of IV antibiotics coursing through my veins no longer provided the ‘pick-me-up’ my body required. I needed more, much more.
Being told it was time to consider a transplant came with thoughts of doubt and immense fear, as well as a few happier moments when I let my mind dream of the possibility of another chance at life. But to be honest, cheery thoughts were few and far between. I researched everything I could about lung transplants and found so many success stories. Like many other CF patients, I consider myself to be brave and strong. I had lost count of the times when I faced scary, serious health complications that had actually made me fear for my life. Yet here I was, still standing, acknowledging and tricking my brain into believing that I could get through this, too.
Somewhere in the haze of completing the many necessary tests to be listed for a lung transplant, I was told my liver would go into failure if I were to undergo such surgery. In other words, my listing had been upgraded to a double-lung transplant and liver transplant. Suddenly it became harder to find stories about this combination of procedures, let alone “success stories.” Double-lung and liver transplants were much rarer, complex, and particularly challenging.
Two years did not fly by on the waiting list. Time passed slow and hard. Each day was about surviving to the next and hoping for a call. In October 2019, I was inpatient and fading fast. I felt so silly for ever questioning whether I was truly sick enough to require such a radical surgery, because that October I found out what being near death actually felt like. Suddenly, for the first time, morning rounds with the doctors always ended with “Let’s pray you get your call this weekend.” We all knew what they really meant, but they never said it out loud.
My CF consists of two very rare genetic mutations. We had all heard of Trikafta being around the corner, but I had been told so many times that it wasn’t designed for someone with my mutations. So, when I was told that a doctor was able to prescribe Trikafta for me for “compassionate use,” I had hope, but my expectations were low.
I swallowed the pills, trying to calm the excitement of those around me. I could not stand the thought of feeling like my body had failed to accept another treatment that might help me.
Within five days, I was out of the hospital and exuding energy that I had not felt for so long. My lungs became quiet — no coughing to the point of turning purple, beads of sweat dripping from my forehead. How could I have spent over two years waiting for a massive surgery, just to recover from an oral pill instead? When my lung function increased by about 35%, I was taken off the transplant list. I was suddenly too healthy for transplant. That battle was tucked away, left to be faced another time, but definitely not now.
Looking back at this second chance, I feel incredibly lucky to have been given those extra years. It was not easy to regain some parts of my life, but I have been thankful every day that I had a life to regain. However, there was a certain irony in my timing. For the first time in years, I could leave my room and go out into the world, just as a pandemic struck, and the world was forced to isolate and learn to live alone.
Interested in sharing your story? The CF Community Blog wants to hear from you.
