Frank Avila

Frank Avila



Tell us about the moment CF became real for you.

CF has always been a part of my life.  I didn't know anything else so CF being real was always there but when it really became a reality was the day I was in the hospital and the doctor told my family and me that we should start thinking of looking at me getting a double lung transplant.  I was just starting college and I thought my hospital visit was just another routine two week stint. I had done CF all my life and was in my "normal" routine of meds, treatments, doctors, infections, hospital stays that I honestly never thought about the "end" which would require me to have a life saving transplant if I wanted to continue living.  I was told as a kid by my doctor that my life expectancy was 21 years old, so on that day when I was told that I would need a double lung transplant is when CF became real. 


What did your first step toward living a healthier lifestyle with CF look like?

I have always tried to live a healthy lifestyle with CF.  I took my meds, did my treatments, everything required to remain stable.  I played sports as a kid and loved riding bikes.  But I also wanted to be "normal" so I did the normal things most teens and young adults do.  I went out with friends everywhere. I traveled with friends out of the country.  I tried to live as normal as possible but continuing to try and take care of my CF.  CF has a way of continually  reminding you that it’s still there so I had to be diligent about doing the right things in regards to taking care of my CF.  I kept up by staying active with either walking or riding bikes.  It got more intense once I moved to North Carolina to wait for the transplant.  Lots of physical therapy to keep my lungs as strong as possible and my body stronger to handle and recover from the intense surgery looming in the future.


What about living with CF do you wish more people knew?

This is a good question.  Growing up I would definitely say YES.  A majority of people I spoke with knew nothing about CF.  I was called a pill-popper in elementary school because I was taking my enzymes.  That incident affected me for decades and I never openly spoke about it in public or with people I recently met because I was now aware that I was different.  You don't look sick so people don't think anything until you start coughing or have to go into the hospital.  Then you have to share your story.  For the most part it was received positively and had the support from everyone.  Now I have noticed that many more people know of CF or know someone with CF.  Now I see how openly people talk about it and there’s no shame in being different and its great.  The education and the awareness has helped tremendously.  It has helped me seeing how strong others are by sharing their stories.  We need to continue teaching and bringing awareness.


When was a time you encountered a challenge and then exceeded your goal?

Everyday has been a challenge.  Making it to the next day was my goal.  I wanted to be an astronaut growing up as a kid and having CF didn't even cross my mind but seeing the Challenger explosion I thought maybe some other avenue with science.  I loved biology and wanted to do something to give back for all the doctors, nurses and everyone that had helped me during my hospital stays.  I wanted to work in a science lab.  I was told that I should try something not so difficult and major with a general degree.  I refused to let CF or anything involving CF ruin that dream.  I started my pursuit for that Biology degree still not knowing what I was going to do with it but I was going to get it.  My CF started getting bad but I continued going to school sleeping between classes and slowly making it through the week.  I wasn't using oxygen all the time so I was pretty drained.  I got my call to move to North Carolina so school stopped but I had already completed 3 years.  I was transplanted on September 18, 1995.  I moved back home in November and returned to school feeling like a new person with a new life.  My kidneys eventually started failing so I was repeating the sleep breaks between classes but I was feeling more tired than I was pre-transplant.  I had to start dialysis and stop school once again because now we were discussing a kidney transplant.  My dad got tested and was a match so the transplant was going to take place back in North Carolina.  I endured three months of dialysis and moved to North Carolina for my kidney transplant on January 8, 1999.  I was able to return to home and return to school.  It was a tough road but I did receive my Bachelors of Science in Biological Sciences in May of 2000.  I ended up going back to school  seven years later and graduated with another Bachelors of Science in Clinical Lab Sciences.  I also had another kidney transplant on July 1, 2009 which my sister donated this time.  I far exceeded my goals at the time.  I always wanted to go to college and graduate with a Sciences degree to prove to myself and others that CF will not stop me from pursuing my dreams.  I currently work as a Medical Technologist in BloodBank for the Veterans Healthcare Administration and love what I do because now I'm able to give back and its an honor to be serving our Veterans.


How do like to spend your free time? Any hobbies?

I have a few hobbies that I enjoy.  I have always enjoyed cars so I started collecting them as a young kid, first it was Hot Wheels and then the die cast models and mainly exotics.  I also enjoyed the model kit cars and putting them together.  I was fortunate enough to try different things that I found interesting.  Collecting marbles, cars, state issued quarters, trading cards, traveling and trying different sports.  I really enjoyed riding bikes.  It was the only time I felt free and that I was "flying" even though I wasn't fast I felt that my lungs were giving me the air I needed to turn the pedals feeling the wind as I rode wherever I chose.  I still enjoy riding bikes and have completed a few bike events and has become a main staple in my exercise routine and look forward to every time I get a chance to ride.  I now have a road bike and a hybrid and enjoy them both. 


Do you have any goals for the future? 

Goals never stop.  I look at them as reasons to keep fighting for that next day.  You want to prove to yourself that you can accomplish what you set ahead of yourself to finish.  Some goals I have in store are to travel to different destinations around the world, have a family, possibly further my education and become a bloodbank specialist and to watch my nieces continue growing up and fulfilling their dreams.  It has been a dream come true to watch them grow up.  I will see what God has in store for me and enjoy everyday that I am given.