My CF Climb Story
On September 17, 2017 I will be participating in the CFF's annual, Climb for a Cure, and I hope you will join me for the 28 floors of pure misery joy in an effort to raise vital funds that will one day cure C.F. A little back story on who I am, and why I do what I do:
My diagnosis came in 1985 when I was 18 months old. After countless months of being fobbed off by doctors, my parents finally decided to take me to a brand new physician. They stripped me down to my diaper, and in one swoop, the doctor walked in, saw me lying on the table with my “big buddah belly,” kissed my forehead, and said, "Do a sweat test". I can picture my Mom now, 26 years old, holding me and being told her baby had a fatal genetic disease. Actually, I can’t imagine that, and it’s precisely why I often say that the only person who has it worse than the CF patient, is the CF parent.
Like the majority of those living with CF, my mutation is Double Delta F508; however, unlike the majority of those living with CF, my issues are primarily GI related vs. Pulmonary. I was healthy until 1995, at which point I went in for a routine surgery for gall stones, and woke up to the news that I was being placed on the OPTN for a liver. While I waited for my pager to go off (totally just aged myself), I was diagnosed with CFRD and in an instant, became a 13-year old insulin dependent diabetic, giving myself up to 6 shots daily. Due to a failing pancreas, I had a feeding tube placed in an effort to put on weight all while waiting for the call that would ultimately save my life. That call came on November 22, 1997. I woke up from surgery on November 23, 1997, and I was told I not only received a liver that day, but also a pancreas, and I no longer had to rely on insulin or enzymes. I don’t think I understood the magnitude of any of those gifts until more recent years, but I am so thankful for my donor, and as I live my life, I remind myself continuously that I’m not only living this life for myself, but the little girl who lost hers.
Today, I am a 33-year old college graduate; I am happy, healthy and try to ignore the looming “life expectancy” for individuals with Cystic Fibrosis. My ultimate goal is to win the lottery have a family of my own one day, and celebrate my own children becoming parents. Until then, I will keep fighting the good fight, for myself, and for everyone else who will hear that diagnosis my parents had to hear all those years ago.