I’ve never really understood why American Heart Association and Congenital Heart Foundation pushed for February to be Heart Month. Yes, there’s a prevalence of heart decorations and clothing available, but everyone just assumes you’re really into Valentine’s or something. Now if you were to have hearts all over your yard or wear an extravagant number of hearts in, say, September, you’d get a little more attention drawn to the subject. How do we make people aware if there’s nothing different?
But no one asked me, so here we are. February 1. Obligatory “I am 1 in 100” post.
I believe I’ve mentioned on this blog before that I was born with congenital heart defects. One in 100 babies are born with some form of CHD. And within that group, there are a multitude of defects and combinations there of. My particular defects are quite rare and complex.
The one that takes most people by surprise, yet causes the least issue, is called situs inversus totalus. Essentially, that means ALL of my organs are mirror imaged from “normal.” So my heart leans to the right, my liver is on the left, spleen on the right… All of it. My cardiologist when I was a kid liked to raise my right hand and tell people it was my left. No wonder I get confused on directions to this day!
The defect that has caused the most issues is probably the transposition of the great vessels. Normally the way hearts are set up the blood from the left side of the heart goes to the body and the right side goes to the lungs. Now, keeping in mind that my heart is a mirror image, you’d think that would mean that the right would go to the body and the left to the lungs. But you’d be wrong. Even though the right side looks like a left side, it acts like a right side. Confusing enough? Basically, the ventricle that was built to pump the long distance to the whole body only has to get as far as the lungs, and the little ventricle that was only needing to be strong enough to go the short distance to the lungs is doing the big work of pumping to the whole body. Needless to say, it’s tired.
Now, when I was born I also had two large holes between the right and left side of my heart. One in the Atria (ASD) and one in the Ventricles (VSD). This meant that the oxygen rich and oxygen poor blood got mixed together in the heart, giving me much lower blood oxygen percentages than most doctors consider functional. I freaked out a number of nurses back in the day. I also had a narrowing of my pulmonary ventricle. All of these were “fixed” when I had my first open heart surgery at age 21.
That’s not to say that it was my first surgery. Not at all. I had a shunt performed when I was 5 to help get more oxygen to my system and at age 7 I got my first pacemaker. I have gotten a new one every 5-7 years since, eventually upgrading to a bi-ventricular ICD.
Given all that my heart has been through, is it any wonder one of my biggest mental struggles is feeling like I’m defective? I’m grateful to all of the doctors that have helped me along the way and to my parents for making sure I had access to the care I needed. I’ll continue to need intervention my whole life and there will never be a cure. Bandaids are the best we can hope for. But medical research and advancements have made it possible for kids like me to grow up. If I had been born at any other time, I probably wouldn’t have made it to where I am now. And I’m doing pretty darn well, considering. Sometimes it’s hard for me to remember that.
So, Happy Heart Month! Take care of yours. Both physically and metaphorically.
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