Moving Forward

The statistics are that 70% of people with cystic fibrosis are diagnosed by the age of two.

I am, or thought I was, a CF unicorn who would forever defy the statistics of median transplant age and life expectancy – sticking out my tongue as I threw off the curve with my uniqueness. Turns out, I was wrong.

I was diagnosed a month before my 14^th birthday. I had a cough my whole life, I had been sick from time to time. The various doctors my mother lugged me to always thought it was something else like tonsils or sinuses. Finally someone sent me for a sweat test and we finally had our answers.

I am one of the 10% of special CF unicorns who is pancreatic sufficient, which is one of the reasons why my diagnosis was so late.

The year before I was diagnosed, this thing called CF Camp had its last hurrah. Every year, kids would go to camp to meet others with the disease and live in an environment where the cough and the medical treatments were just a normal part of every day life. Unfortunately for me, new infection control protocols of the mid-90s dictated that kids with CF really should keep their distance from each other and camp was no more. The nurse showed me pictures of smiling kids at camp, bonding over inhaled treatments but I never got to go and meet others like me.

The day I dared to join that message board changed my life. The other Internet peoples intimidated me with their profound CF knowledge and total immersion in CF life. To me, I was never going to let the disease define me so took my medications and went to the doctor like a good girl but I never paid very close attention to my medical file. When I added my post, something about being in university and looking to meet other ‘gooey’ people, I got a few ‘welcome to the group’ responses from some of the more active members but later that night, I found a message in my Hotmail account from a girl who saw my post and wanted to introduce herself.

Our commonalities were staggering, we were both in the same year of university and had been born two days apart but the real connection came from realizing that we both had very similar views on life, despite growing up in different countries 2000 miles away from each other. Katie was the first person to understand how embarrassing it was to cough in a busy lecture hall, she could commiserate with me about being afraid of intimate sleepovers when it came to that weird sleep moaning that oddly comes with CF. From the beginning, I knew that I could trust Katie with any thought or fear and she would completely understand.

When my doctor shattered my world and told me it was time to think about transplant, I was devastated. It destroyed me because to me, transplant meant that you were at your end and my mid-20s were nowhere near the age of CF life expectancy when people should consider transplant.. When I told Katie, secretly, I was so scared of moving to the next step of this disease and no longer having her to relate to. I was afraid that having me go through this would scare her too. I went on, promising to go through it first and make it look easy for her.

Of course, she supported me the whole way through.

Now I’m on the other side of CF, the post-transplant side. My new (gently-used) lungs don’t have the CF mutation so my days of mucus and cough are over. I breathe easily like any normal person.

I worry now, seeing Katie deal with infections and other CF exacerbations that her time for transplant will come too soon. She has a zest for life that I have always envied, she travels and loves and eats the exotic foods that make me squeamish. I worry about her having to deal with transplant in a country that lacks the gloriousness of socialized medicine. But when her time comes, I will be there to support her and be excited for her to join me on this side of CF.