• Can I share my heart with you?

    Everyone has that defining piece of information about themselves that gives insight into “who” they are and what their guts are made of. For some, it’s a traumatic childhood full of abuse; for others it’s a struggle with alcoholism, and for me, it’s my heart. The issue for me is not “do” I tell someone I’m getting to know but “when” do I tell.

    It has been a problem for me. As a child I had to tell others because I couldn’t play ball or run around the track in P.E. Of course there was also summer time when clothes came off and I got the “what are those scars?” stares and questions.

    I’m never afraid to tell people. I consider myself a fairly open book. I might even say I’m proud — being alive is quite an accomplishment for me. What I do fear is giving the impression that I’m looking for pity or that I am tooting an “I am special” horn.

    I once met the most gorgeous fireman at a college party. Every girl was drooling over him, but I ignored him because I knew I was out of his league. To my utter shock, he approached me and we had the most lovely conversation. I about vomited when he asked me for my phone number so he could arrange a date with me.

    He called me the next evening and around the six-hour mark in the phone conversation, I decided to tell him about my heart. I forget why I thought this would be a good time, but as I started to tell him I instantly felt remorse for moving so fast into “who I am” territory. He was sweet about it, and to this day I’m not sure who was more freaked out, but I eventually ended the relationship because I was scared from how quickly I showed vulnerability. Also, he was way too good-looking. I couldn’t handle the way women stared at him. I bet he can’t handle it either.

    So here we are, dear readers. Is the timing good for you? Just remember, this is only one of my defining pieces of information, but I think it is the biggest one.

    I was born with a congenital heart defect called Tetralogy of Fallot with Pulmonary Atresia. That basically means there were four defects with my heart. The most detrimental being that the vessel which carries blood to the lungs (the pulmonary artery) resembled a deflated balloon, thus very little blood could get to my lungs to pick up oxygen to feed the rest of my body. No bueno.

    So, my parents were given a choice: try experimental drugs and a palliative bypass surgery, called a shunt, or keep me comfortable as I die.

    I am happy with their choice.

    They were warned I probably wouldn’t survive the open heart surgeries and could have lasting effects such as brain damage and mental retardation. General Anxiety Disorder isn’t looking so bad now, huh?

    I did, in fact, die…twice, on the operating table. It was during my 4-year-old open heart surgery when they replaced my deflated balloon pulmonary artery with an angel baby’s aorta. I remember it pretty clearly, a Care-Bear filled anesthesia dream state quickly changed to the infamous dark tunnel with a white light at the end of it. I looked down at my feet and they weren’t “there,” but then they were “there.” I entered the white light and came to a point of no return. I remember a giant hand, and a message. Without words, I was told it wasn’t my time and I still had more to do in my life.

    I got a “just kidding” from God… twice.

    After a lengthy recovery, the doctors deemed me “repaired” and we were told my new pipe would last around 10 years. So I grew up, thinking that at age 14, I would face open heart surgery, and death, again. I was able to push it back another three years to the summer after I graduated high school. My 17-year-old open heart surgery was very successful and I barreled through the experience with all the courage I could find. I was home after only five days in the hospital. Sorry, I’m tooting an “I am awesome” horn for that one.

    It wasn’t until recently, as I prepared for pregnancy, that I discovered I am only one of a handful of survivors of a particular shunt procedure I received (the Waterson Shunt). Now, as I approach year 13 after my last open heart, I anxiously wonder what my future holds. How long will this new pipe, supposedly a huge football players, last me? They told me I wouldn’t need another and this one should last to my 60s or 70s, but I can’t help to wonder how long God planned to send me back, to “do” something.

    So, I keep on living, ’cause that’s my gift from God. Now I’m building my career around being there for other children with congenital heat disease through my work as a pediatric intensive care nurse. It’s hard because I’ve seen children die from my same condition. For the ones still fighting, I think it can be helpful to the parents to see that I survived, with only minimal brain damage. I have a philosophy that to be happy in life you must take the thing or two which defines you and turn it into your life’s work. I’ll keep advocating for children and adults with congenital heart disease for as long as I’m here.

    Well, there you have it. I guess I just figured it was time to share. I hope it wasn’t too soon for you. Either way, you are all too beautiful for me, and I just can’t take it.



  • Leave a Comment