Hello, my name is Frankie Avila. As you may know, I have Cystic Fibrosis and had a double lung transplant and two living related kidney transplants.
I was diagnosed at 3 years old and was told that my life expectancy would be 15· years. I am now 45 years old and 23 years post double lung transplant and just made 10 years post kidney transplant.
Growing up I was never open about my CF, as I was trying to be as "normal" as possible. I had great friends who understood treatment time, my medications and tune-ups twice a year. My dream was to get a degree in science so I could help others for all those who had helped me growing up with CF, plus I liked science. That dream started, but CF had other plans.
My lungs continued to deteriorate to the point of being told I would need a double lung transplant. I remember that day vividly. I was at Tulane Hospital for a tune-up and my parents and sisters were there. Surprisingly everyone remained calm and just took the news as something new we were going to have to battle. I grew up with a strong support system so giving up was never really an option or thinking that my life was going to end, not that those thoughts crossed my mind at times. I continued as usual and was able to complete 2 years at UNO until it was time to solely focus on my lung transplant.
I moved to NC once I was number 2 on the waiting list so I could be closer to my transplant center at UNC-Chapel Hill. I had plenty of family and friends staying during the 2 year waiting period with only one no-go for possible lungs. 2 months later and once again in the hospital, while at PT, I was told there was a possible donor. The usual emotions ran through my mind but there was a difference this time, I felt peace.
Later that evening on September,18, 1995, I was transplanted. I was given the gift of life by a selfless donor. I don't know who my donor is but I am grateful for my beautiful set of lungs.
I returned to New Orleans 3 months later to witness my nieces birth and to return to school to finish my science degree. There were multitudes of pills, doctor visits, labs, unexpected rejections, crazy body transformations from medications such as the well known moon face, all while continuing school and living life to the fullest. I stayed on course, but my kidneys continued to get worse due to the toxic immunosuppression. 4 years later which included 3 months of dialysis, I would need a kidney transplant.
My dad volunteered to be my donor of a kidney in Jan 1999, and it gave me 10 years until another kidney was needed. This time my sister volunteered and it was a complete blessing. My sisters kidney was a perfect match. That transplant took place in July 2009. My sister left the hospital the next day, and I was able to enjoy 4th of July at home.
I eventually graduated with a B.S. in biological sciences and later received a B.S. in clinical lab sciences. I’ve been working FT as a med tech and it’s been very rewarding. Life has been full for me and I thank God and my donor for each and every breath.
I rediscovered cycling and have been able to participate in many local events like the Cycle for Life in North Carolina last year. I enjoy spending time with my pup, Mia, family and friends. I want to continue giving back by bringing more CF awareness and the need for organ donation because of someone's gift of life to me.