Last year, when I had to leave my job as a licensed practical nurse (LPN) due to hemophilia-related issues, one of my biggest concerns was how I would maintain my medical and dental insurance coverage. For the previous 3 1/2 years, my health insurance had covered 100% of my hemophilia-related expenses.
It’s hard living with a chronic condition. Most chronic conditions have a mind of their own and operate on their agenda, not that of the person living with the condition. Yes, we may have some control over symptoms or treatment, but sometimes the condition is unpredictable and unexpected things happen.
I never envisioned getting a port placed in my chest and beginning prophylaxis for my hemophilia in my 40s. Throughout my life with hemophilia, each time I had a bleed, I would get an infusion and move on. Until three years ago, I had bleeds on a moderate basis throughout the year and didn’t give much thought to the need for regular infusions. I’d certainly never thought about having a port placed in my chest!
Sometimes we all reach crossroads in our lives where we face decisions we didn’t think we’d have to face, or deal with situations we didn’t expect. The year 2010 was like that for me.
I’ve always been a very methodical person—a planner. My mantra in life has been “one minute of planning saves 12 minutes of doing.” In 2005, I decided to leave a career of nearly 20 years in the corporate world, having been successful, but very unfulfilled. My mom passed away, and my dad was very ill.
My name is Ryan, and while I’m certainly not the first in my family to have hemophilia A, I believe I have a unique story to tell. I’d like to tell you a little about myself as well as the path my life has taken, and in doing so, I’ll share my “hemo hijinks” with you.