WELCOME TO MY WORLD! Thank you so much for swinging by my page and seeing what I’m up to in my journey through life with Cystic Fibrosis. I have a passion for spreading the word about CF and that life doesn’t have to end because of a diagnosis. I have made it this far and I am not stopping here.
A little about me…I was diagnosed with CF with a positive sweat test (standard test for diagnosing CF) in July of 1980. My doctor suggested I get tested for CF because I had “failure to thrive.” I was not growing and keeping weight on because my body was not getting the nutrients it needed, due to being pancreatic insufficient because of the undiagnosed CF. My parents didn’t think anything of it because my older brother was tested for CF when he was around 2 years old (in 1979) and it was negative. Much to my parent’s surprise, my sweat test was positive, indicating I did indeed have CF.
As scary as it was for my parents, there was finally an answer as to why I wasn’t keeping weight on. This meant they could get treatment for CF pancreatic insufficiency started so I could put weight on and keep it on.
Thankfully my parents didn’t keep me in a bubble during my childhood. I was able to do all the “normal” kid things like go to school, play soccer, try to survive having an older brother, etc. Yes, I got sick with normal kid stuff like strep, flu, bronchitis, etc. I broke bones from being a kid. Of course, we used common sense and I stayed away from sick people and didn’t go around a lot of people during “sick season.” There’s more about my growing up years in my book in the menu at the top.
I was evaluated for a lung transplant for the first time in 2016. I wasn’t ready to be listed yet. These God given lungs have a little more work to do before I get a new set. I’m followed regularly by my transplant team at Barnes-Jewish in St. Louis, MO. I make sure to stay up to date on all the testing and requirements like vaccines, dental checkups, vision check ups, etc to make it an easier process when I am actually listed for lungs. I don’t know when that time will come, no one does. I’m just living life to the fullest and making all the memories I can in the meantime.
Life with CF is very unpredictable, especially for me it seems. I defiantly keep my doctors on their toes.
Thank you for following along my journey through life with CF. Thank you for all of your love and support. It is greatly appreciated.
CF Happens 