I was diagnosed with PKD when I was 7 or 8 after my dad was diagnosed with PKD. Being diagnosed so young was strange because I didn’t really understand what it meant. Now I do.

As a young adult, I always tried to be healthy. I ate lots of kale and always got my full eight hours of sleep, but when my dad died a few years ago at age 60, I took more control of my health. After bursting into tears in my PCP’s office, she referred me to a nephrologist (I cried during my first appointment with her, too. What can I say, I’m emotional!). Ever since then, I’ve been seeing my nephrologist every four to six months. In September, I’m participating in a two-year clinical trial that the PKD Foundation contacted me about. I have a blood pressure machine at home, I try not to eat too much meat, and I do my best to avoid stress, which is hard as a business owner. But I try!

I do all this because I want to live to be older than 60. I don’t want my life to be half over. I want to be around longer for the people who love me, longer than my dad was around for me.

That’s the scariest thing about this disease. The unknown. Wondering how many years I have left. But, I’m hopeful. I’m hopeful that with the help of my nephrologist and the rest of my healthcare team (and through the good work of the PKD Foundation) I can slow the progression and avoid dialysis altogether.

I’m very lucky that I was diagnosed young, and I hope that I’ll be lucky enough to grow old, too.