Hello! My name is Anthony, but everyone calls me Tony. When I was diagnosed with Cystic Fibrosis (CF) at 9 months old, my parents were told some very scary statistics. Most of those statistics, with thanks to my faith and the development of medical research, I’ve been able to defy. Even still, at 14 years old I was listed for a liver transplant. I waited 18 long months for a donor. I was fortunate enough to be able to return to school for my senior year of high school. Finally! I didn’t feel ill or rundown and I could just be another graduating high school student.
I went on from high school to a local community college on financial aid and scholarships. Things were really looking good for my future. I quickly realized I needed a part time job to support myself through college, so I began working at a grocery store.
It was there that my lungs showed the first real sign of failure. Sure, I had my fair share of exasperations like any other CF patient up to this point, but none like that winter. While I was at work my lung collapsed. Of course I didn’t know this at the time. Later that night, in the hospital I experienced my first chest tube for a collapsed lung. Over the course of the next 2-3 years this would be a recurring challenge. My lung function decreasing with each occurrence.
At my worst my lungs were functioning at 16% and completely dependent on oxygen. Still, I found ways to accommodate my hobbies, such as woodworking, camping, fishing, and exploring the great state of Maine. Thanks to a wonderful new medication released in 2019, I was able to reclaim some lung function, regain some quality of life, and accumulate enough body weight to be considered for a double lung transplant!
Starting the fall/winter of 2019, my family and I changed our entire lives around and sacrificed convenient care locally for quality care 4 hours away in Boston. Even still, it took over a year to finally get the call that I had been placed on the transplant list for new lungs! What a great day! Little did I know I would have to wait another 29 months for new lungs. During that time my family and I started accumulating travel expenses for appointments, working hard to ensure I was in the best physical, mental, and emotional health when the amazing call came saying new lungs were available.
April 19th, 2023, that call finally came. Absolutely stunned, I made my way to the hospital for what could be a new chapter in my life. My family and I spent the next 18 hours on the edge of our seats because we knew it wasn’t official until the first incision was made in the operating room. April 20th will forever have a place in my heart as the day I celebrate my lungs, my donor, and the future I now have thanks to my faith and the development of medical research.
While I’ve come through the transplant surgery with amazing results, there have already been setbacks, continued appointments, therapies, and testing that have started to put a financial burden on me and my support team. After the first few months post-transplant, I have come to realize that the ongoing support and care I am going to need is going to be very expensive and may last a lifetime. While I wish I could cover all expenses, I knew I needed to find a way to alleviate the growing financial burden on my support team and myself. This is where I’ve decided to partner with the Children’s Organ Transplant Association (COTA) – a nonprofit organization dedicated to helping individuals and families who need a life-saving transplant by providing fundraising assistance and family support. COTA truly is an incredible, reputable organization that has helped so many families.
I am forever thankful to my wonderful family and friends that have provided support, daily care, transportation, and encouragement. I am also beyond thankful for the generosity of those of you that can help me on my continued journey, and while there are no guarantees, what I can promise is to never take any of this for granted.
Thank you all so much.
-Tony
The Children’s Organ Transplant Association (COTA) helps children who need a life-saving transplant by providing fundraising assistance and family support. COTA also works with individuals of any age with a single-gene disorder such as Polycystic Kidney Disease, Cystic Fibrosis or Sickle Cell Disease. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy families. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free of charge and gifts to COTA are tax deductible to the fullest extent of the law.