I would have died without a double-lung transplant.
Those words still send chills down my spine. It’s surreal that my story could have turned out differently. I try not to dwell on it, but sometimes my eyes sweat with emotion while reflecting on that truth: I was dying before my transplant.
I was born with cystic fibrosis (CF), and the lung disease was always aggressive. My days consisted of breathing treatments and airway clearance as I fought to breathe through thick, sticky muck that clogged my airways. I had to conserve energy because of how much it took just to breathe. I was stuck in survival mode.
I struggled with mental health symptoms. Not that I need to justify it, but my anxiety was warranted. I had trouble breathing because of my CF lungs, which triggered anxiety that I wouldn’t be able to catch my breath, might pass out from a coughing fit, or would die in my sleep. I suffered from depression on the regular. It was heartbreaking when I desperately wanted to do so much, but my body said no, and I was forced to listen. It also didn’t help that I had the average CF life expectancy constantly drilled into my brain.
In 2017, I went into respiratory failure. Six weeks prior to my transplant, the intravenous antibiotics stopped working and I grew sicker. My lungs were filling up faster than I could cough and spit out the mucus that was drowning me.
The call for new lungs came at just the right time.
My surgeon showed my parents a picture of my CF lungs, which were badly beaten by the disease and worn down from countless respiratory infections that scarred my airways. Based on how weathered my lungs looked, I didn’t have much time left, the surgeon explained.
“We didn’t know how you were breathing,” my parents said. Apparently, my upper lobes disintegrated as they were removed from my body during surgery. The rest of my lungs weren’t much better.
It’s startling to think about what could have happened if I didn’t receive the call for new lungs when I did. I don’t think I’d still be here to tell my story.
Thank God transplant was an option for me.
Debunking the myths
I didn’t choose to have a double-lung transplant. Some people believe it was an elective surgery, so let me rephrase: I chose to live, and the only avenue available was to get new lungs. My CF lungs couldn’t sustain my body any longer; they were failing. I was at the mercy of modern medicine and a selfless stranger’s decision to donate their organs when they died.
It can get frustrating when people make assumptions about my life. On days I’m well rested and have had enough coffee, I can respond with grace. On other days, it’s hard to converse with able-bodied individuals who refuse to believe that my lived experience is real.
My approach to life has drastically shifted because of everything I’ve been through. I no longer pretend that I know what people have endured if I haven’t experienced it firsthand. I want to hear about your own personal experience.
Assumptions are corrected through education and conversations about things we don’t understand. Allowing people to tell their stories is not only how we learn and grow, but also how we give others a voice to share their perspective.
Perhaps the world would be a kinder place if we chose to listen more than we spoke and appreciated the life we’ve been granted — no matter the cost.
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, and are intended to spark discussion about issues pertaining to cystic fibrosis.
