Karen & Ron Hoge

This lovely poem was written by my brother, Rob Deemer about the Great Strides Walk, Centennial Park. I wanted to share it with you. As you read, please know that the kids in green shirts are our precious kids with CF. :)

Please read on to find what Travis has to say about managing HIS CF!

             I was born three months prematurely at Johns Hopkins Hospital. I had an array of health problems and was given a “one” on an Apgar Scale of ten on how healthy I was when I was first born. Most babies that are born this early struggle to survive—as did I. At the age of three, in addition to my prematurity, I was diagnosed with cystic fibrosis; at that time, the disease was a death sentence. The average life expectancy for someone with CF was to live to the age of eighteen. My parents, and my mom especially, have always been very active in my disease--pushing me to do my medications, coming to every doctor’s appointment, and encouraging me to stay active and healthy. With that being said, doing my medications has always been ultimately my choice. It’s not always an easy choice: going to sleep after getting home from a long day, filled with internship and school or doing a long tedious medication regiment. Which sounds more appealing? This is something I struggle with every day, but I usually can stay on top of my health requirements pretty well. That was not always the case, however.

            Upon getting to high school, the last thing in the world any teenager wants to do is medications. Having been doing them my whole life and staying healthy, it’s a very difficult thing to keep up with the drudgery. I started to miss more treatments frequently, and my health suffered slightly as a result. I read a book recently in my grad class that really seemed to summarize this period of time for me. “We recognize in those moments of revelation what life is asking us to do, where we need to grow up.  And what then are we going to do about it?  Are we going to deny, repress, blame others, shuffle about a bit, dance some dilatory doo-dah until we die, or finally grow up, step into largeness, become an adult? (Hollis, 2009, p. 72)”

            I was mad at the disease. I was mad that I got it and no one else did. I was mad about having to spend an hour out of my day that no one else did doing treatments to help me stay at a baseline level of health. When things started to slip a bit I got the typical speech from my doctors about staying healthy and keeping up with my medications and treatments. I think one of the hardest thing about this for me was I never noticed a difference. If I did my meds, I didn’t notice a difference, if I didn’t do my meds, I didn’t notice a difference. So why keep doing them? Ultimately, I was able to get back on track and keep doing them again when I started to look at things a bit differently.

           I started to view it as my disease, something I had control over but that didn’t have control over me. I started exercising more, doing my medications like I was supposed to, all while trying to balance and maintain a normal life for a sixteen-year-old. I realized that even though I may not notice the physical effects of my medications at that time, if I wanted to be able to physically grow up and become an adult, I would first need to mentally grow up. I am proud to say that today, as a 27-year-old, I have 80% lung function (which is very rare for someone with CF at my age), and I have lived nearly twice as long as the average life expectancy from when I was born.

         The last time I was at the doctors for a routine quarterly checkup, my doctor said that if I maintained my current level of treatments and if there were no advancements in medical technology, he believed I could live anywhere from my sixties to my seventies. My mom was very happy hearing this, but for me it seemed unacceptable. I don’t want to die at 60. I have proven my doctors wrong so many times before and defied the odds so much already. I want to continue that trend and live to seventy, at least. I know in order to achieve this goal, I will need to stay active with my medications and stay on top of my treatments. This is my disease to beat!

Please support me!

         Help me reach my fundraising goal by donating to my Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of Travis and other people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible. Thank you for your love and caring! Karen :)