Inspiring Hope and Happiness for Those with Cystic Fibrosis
Inspiring Hope and Happiness for Those with Cystic Fibrosis
A Cystic Fibrosis Life
Thank you for taking time to visit our website. I hope you find it both educational and inspirational. I am forever grateful to my family, my friends and my community, who have collectively embraced the mission of Take A Breather, by supporting my efforts to make a difference in the lives of those touched by cystic fibrosis (CF).
Born in 1968, very little was known about cystic fibrosis, other than it was an early death sentence for most. Children with CF rarely lived long enough to attend elementary school; the CF Foundation was still in its infancy and there were very few medications available to treat this disease. Needless to say, the odds were stacked against me from the beginning, but I was unaware of this, because of the conscious decision my parents made to raise me with the same amount of love, guidance and expectations they had for my siblings.
I grew up in a small town outside of Philadelphia; one of six children raised in a middle class, Irish catholic family. My older brother, Mark, whom sadly none of my brothers, sisters or I got to know, passed away from a CF related bowl obstruction at 2 months of age…Mark never came home from the hospital. Looking back, I think Mark’s short battle with CF was the catalyst for my early diagnosis. As my mother began noticing some of the same symptoms in me as she had in Mark, she voiced her concerns until the doctors agreed to give me a sweat test.
Fortunately, cystic fibrosis played a very limited role in my childhood as I kept very active in sports, school, and boyhood mischief. Six times a year, my mom and I would make our drive into the city to The Children’s Hospital of Philadelphia where I went for my “CF Check-up”. We both looked forward to these visits for very different reasons; my mom always looked for the older kids in the waiting room and I remember this one particular gentleman who was probably in his early twenties and her always pointing him out. Seeing him gave her encouragement and in turn made me happy. I looked forward to these visits because it got me out of school for a few hours, and I was always treated to a McDonald’s cheeseburger and soda afterwards.
One of the first memories related to my disease would occur over the summer going into 6th grade. My parents had come to pick me up after spending the week with my cousins and they gently broke the news that my friend John had died. I remember crying in the back seat of the car as I processed this news. Was I crying because I was sad, or crying because I was scared…… scared that this would happen to me as well. You see, John was a friend of mine who also had Cystic Fibrosis. My classmates and I sadly watched as John’s disease slowly robbed him of his childhood and ultimately took his young life. Today, we honor John’s memory annually by presenting the John A. Nardi, Jr. Memorial Memorial Award at our signature event. John would be proud to know his name is bringing smiles to other kids with CF.
As I became a teenager, doing treatments and taking meds was never an issue for me. They had become part of my daily routine, just as brushing my teeth, getting dressed and showering were. I didn’t know any different. I did my treatments twice a day mainly to appease my mother, as my outdoor activity was my real therapy. In high school, I continued to thrive as I played on the football team, worked part time jobs and kept an active social life. Self admittedly, I was not an academic over-achiever, however I went on to graduate from St Joseph’s Prep and La Salle University here in Philadelphia.
Fortunately, or unfortunately, depending on how you look at it, my first hospitalization didn’t occur until my freshman year of college. I credit this in part to my new lifestyle…. c’mon, I was in college and enjoying my freedom a wee bit too much. It was over the summers that my friends and I would rent houses at the at the Jersey Shore, no, not that “Jersey Shore”. I came away from these summers with some of the best memories and some pretty good stories, but those I can’t get into here. The beach has always been a big part of my life. As a child, my family would spend our summers in Longport, a seaside town in southern N.J. Today, I live there with my wife. I find being near the ocean very therapeutic, and often wonder if spending my early years breathing in the salt air had a positive effect on my developing lungs.
After college, I married my wife Chris, who coincidentally I met at the beach. I had a career in advertising production; we purchased our first home, and traveled to all the warm islands we could find until we found our favorite, St John, USVI. We don’t have children, but love spending time with our nieces and nephews and are blessed to be godparents. Cystic Fibrosis never stood in my way, and I never tried to hide my disease. I figured if I made it an issue, it would become an issue. However, though I didn’t go around telling everyone I met that I had CF, I did tell those who needed to know. My family, friends and colleagues have always been supportive – and to me, that’s all who matter.
When I hit my forties, I noticed my disease progression, this was also the time I was diagnosed with CFRD – Cystic Fibrosis Related Diabetes. In July 2015, reality of the situation finally set in and after a long internal struggle, I finally surrendered to my failing lungs and was listed for a bi-lateral lung transplant. My lung function had decreased to 10% and my freedom was tethered to an oxygen tank. My decision although hard was helped knowing that I had lived an awesome life surrounded by love, support, and the greatest of friendships. I knew as I entered this unknown world of transplantation, I was finally at peace with all outcomes.
On November 15, 2015, I received my new lungs and was given the greatest gift – the gift of life. This, all because my donor made the ultimate selfless act a human can make. Every day I am reminded of this with every breath of fresh air I breathe into my new lungs. I am also extremely grateful to my pulmonary team, transplant team and everyone at the Hospital of the University of Penn for the great care I received.
Reflecting on my journey with cystic fibrosis, a story most of us have heard comes to mind. It is the legend of the “Basket of Burdens”, which describes a group of people at a meeting, who were asked by an elderly moderator to write down the three biggest problems/burdens they were facing, and then they were told to fold and drop the papers in a basket. Each person was then asked to pick a paper from the basket, and decide if they would want to switch their problem for the one they chose from the basket. Without exception, no matter how severe they believed their own problem was, no one wanted to exchange their problem with someone else’s. The message this gentleman left them with was “in light of everyone else’s problems, your own worries and problems seem manageable…..and if nothing else, that’s something to be grateful for.”
Each of us in our lifetime is given a cross to bear; cystic fibrosis happens to be my cross. What I choose to do with this cross, has taken on more meaning in my life recently. Most aren’t lucky enough to find life’s answers, and I still have many questions, but I believe I have found one answer, and that is to take my life experience with Cystic Fibrosis and use it to positively impact the lives of others living with this disease. Staying true to this mission, I hope to use my voice to inspire magical moments of hope, strength, and love through the fulfillment of Wishes for those battling CF.
The medical advances I have seen in my lifetime are nothing short of amazing. As the scientific community brings us to the doorstep of a cure for Cystic Fibrosis, my greatest Wish is that every child and adult touched by CF may find peace and comfort in their lives and that one day, all will experience a life free of this disease.
I leave you with this, when I was 4 months old the doctors told my parents that I had Cystic Fibrosis and if I was lucky I might live to age 6….this past August, I turned 50. If my story can bring hope to just one person out there, then it’s been a pretty good day.
“CF is a disease that only gets harder with age. It’s a gift for us to be able to offer our patients a glimmer of hope and enjoyment through your program.” — Marianne Buchanon, CF Social Worker, UNC