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Cystic Fibrosis, Lung Transplant

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The Life in Your Years

My name is John Lucchesi. I'm a 50-year old guy with cystic fibrosis (CF), and I received my second double lung transplant at Penn Medicine.

My life has been changed by transplant medicine in that I can continue my journey of self-discovery, continue to be with the people I love and continue to inspire those I come into contact with. For me, life was never about waiting until "one day" or ever having to say "should've, could've, would’ve." I sang in a rock band and snowboarded while working through my illness. I adopted a relationship with my illness that gave me power and weakened the grip my illness wielded over me. My desire to live overcame my illness’s power to take my life. The lessons I learned and the knowledge I've gained on my journey have led me to a certain strength, which got me through two double lung transplants.

I think we are constantly bombarded by our health care teams with talk about the importance of diet, cleanliness, precaution this and precaution that. We are told a lot about what not to do, but what helped me most was focusing on “what I should do.”

What I found is most inspiring is focusing on the reason people get transplants. The real reason! For me, it is not to live life in a bubble, or to be fearful of contracting some strange bug if we touch the railing at the train station, or to be afraid to hug our best friend or to take a 14-hour flight across the globe. Don’t we get transplants to continue our personal journeys, to be with loved ones and to forge our lives and lead by example? It’s probably a little different for everyone, but those are my rules of how I want to live my life after transplant.

I want to inspire and raise awareness of this gift, and I can't do that in a bubble; I can't limit that to my town, my own state or my own country. How can I inspire people who need that extra push to overcome whatever demons they are trying to slay sitting by staying safe at home and being hermetically sealed? What works for me is being in the world meeting people, sharing my story, showing my scars, laughing, loving and making meaningful connections, and being inspired by their story. Even Michael Jordan needed inspiration!

My first transplant surgeon was an amazing man, and one day while roaming the hospital corridors looking for the new PFT lab at the University of North Carolina, we bumped into one another. I had had a complication during my first transplant that left me temporarily blind. No one knew for how long, but I was blind for a reason. When I bumped into the surgeon, he asked how I was, he said I looked great, and we chatted for awhile about life. 

I told him of all the things I was able to do since the transplant. He smiled. He then apologized for the mishap that led to my temporary blindness. This kind and caring apology, brought to mind something he had said during the long evaluation process. What he said rang clear and true: "Well, you know that we can't offer you quantity, only quality."

That stuck with me during the ensuing years. It's not about the length of time you are afforded by transplant but the quality you are given during that time, which we all know varies from patient to patient.

So now when I meet people who want to compare, or who want to quantify their time and how long they have lived with this dreaded disease, I tell them, "I would rather live to 20 having climbed Mount Kilimanjaro, than live to 50 and have done nothing."

It’s not about the years in your life but the life in your years. It’s a lesson humanity needs to learn, but more importantly we, as transplant patients, need to learn it at the outset so we can fully enjoy the lives we have been given. And there lies another gem of wisdom: Don’t let fears prevent you from living your life as you see fit. There's an amazing world out there waiting for you.

Learn more about the lung transplant program at Penn.

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