My Normal

CHD is the best thing to ever happen to me.

Growing up in the 1980s and 90s with a congenital heart defect was not easy and it sure did not feel "normal." After all, my generation had to rely on playing outside, which was something my little defective heart could not tolerate well. In typical Jimmy fashion I would play till I passed out or ended up in the hospital with my doctor always saying, “Jim, you know your limits.” Of course I knew my limits, but even at an early age I would push myself until I fell over—I just wanted to be normal.

By age 31, with six open heart operations under my belt and several—and I mean several—lost jobs, I thought life was under control. I had a great job with a great company and an office with a view of the Pittsburgh skyline. I finally had the chance to make a life for myself. Then one day while in an office meeting, I began to feel faint. Next thing I know I’m getting carted out of work and taken to the hospital.

It was February 2013, just two years after my Fontan revision. My doctor basically told me the Fontan revision did not work as we had hoped and I was in heart failure. We discussed options and after a few months of trying different medications, the option I was left with was heart transplant. I underwent all the evaluations and got listed in September 2013.

As you all know, hospitals can be boring. The last two years I had very many hospital stays, but this time I battled the boredom with books, informative websites and quality conversations with staff and other patients. I began to feel lucky and that my CHD was not a curse, but rather a blessing. For years I tried to live normal and be like everyone else.

It took knowing that I was going to one day be normal and have a real, functional, non-defective heart to love my imperfect heart. CHD thrust me into a life I didn't choose but it made me the strong, passionate, courageous and life-loving man I am now. Sure, I have to live on SSDI and I lost some really great jobs. Even without a career or six-figure salary, I am wealthy. I am a dad who actually gets to watch his daughter grow up. I’m a son who gets to hug his mother and thank her for all her sacrifices and I’m a fiancée to a woman who loves me for the person I am.

I became driven to live as long as I could with my failing heart. The more positive I became, the better days felt. Loving myself and my imperfections with support from my family and doctors was my new medication. The result was being placed on the transplant list. My imperfect heart and I have fought hard together and now we get to stay together a little longer. After 33 years I now know why I was given this gift. I truly am normal, my normal.