The Guilt of Living with a Heart Condition

Throughout my childhood, my heart condition was never something that defined me. Growing up with it, it was almost like I didn’t even know. More recently, with getting married and wanting to start my own family, it has come to the forefront of my mind. My heart condition was always just a part of me, and I honestly didn’t do anything different because of it. I had my restrictions of course, but as far as feeling left out or different—it wasn’t a huge deal with me. I feel very blessed, and now being older and understanding and learning more about my heart, I know there are some things I should take control of.

I was born with pulmonary atresia with in intact ventricular septum. This is also known as HRHS, hypoplastic right heart syndrome. My right ventricle is also underdeveloped. I was baptized before being lifted off into the helicopter to take me to the hospital to have immediate open heart surgery. I had the Fontan procedure and two other surgeries all before the age of three.

I had a few moments during my childhood that stand out as feeling different because of my heart condition, but it never felt like I couldn’t do what I wanted. Every year I go for my cardiologist appointment, and everything has always been good. I am lucky to say I’m very healthy.

These past couple years have slightly changed, though, and have changed me as well. I’ve had to go back for the first time in two years, and it was scary. I’ve learned more about my heart and liver in the past two years than ever before, which is why I started to get involved with ACHA. I’ve already met some amazing people through the website, and the support is wonderful. I’ve never known anyone like me and it’s great to have such a network of people that have similar conditions to be able to talk with and blog to. It makes all the difference.

I’ve found peace with connecting with people like me, and this has helped me to cope with the guilt I’ve been feeling more recently. The guilt I feel comes from very small things, from the way I eat to how often I work out—all the way to feeling sad for my parents to have to go through what they did with me. It can be emotional, knowing that I shouldn’t get upset about something inconsequential because I know I’m lucky to just be alive. But I know I can be a little hard on myself. Every day I try my best in every way, and I am always improving.

I like to say I stay healthy, physically and mentally. I even practice meditation. Mental and emotional health can sometimes be looked over, but I’ve learned it is just as important. I’ve learned so much just this past year with ACHA, and I am determined to learn more about my condition and in general. I am also coming to realize that I am human, so if something makes me sad, or I eat some ice cream, I shouldn’t beat myself up about it. Instead, I should be less judgmental toward myself and understand that I’m trying and I’m not alone.

I have a great support system within my family which includes my new husband, Mike. He is always there for me, supports me with anything I do and when I am sick he is always there. He’s taught me so much about life and the one thing I love the most about him is his positivity. Through him, I’ve learned that instead of feeling this guilt, I can feel grateful.

So, to kick the habit of feeling sorry, I’d like to THANK my Mom and Dad. I know they will be some of the first people to read this, and I want them to know that I love them. The most guilt I’ve ever felt is looking back at my parent’s life. Now, being close to the age they had me, I honestly wouldn’t know what to do if I was in that position. They were the ones who had to watch me get open heart surgery, be lifted off in a helicopter, and go year after year with me to these appointments hoping I’d be OK.

Mom and Dad, I know you are reading. Thank you for being so brave. I hope you know you’ve done a great job; I never felt like an outsider and you never held me back. I am forever grateful for that and for the normal childhood you have given to me. I love you both.