Tuesday, 3 January 2017

Strength Over Fear: Rants & Ramblings About Living with Congenital Heart Disease



Sometimes, I sit around and I think about everything that has led me to the moment I’m at now. I’m okay. I’m healthy. I’m strong.

I previously talked about my congenital heart disease in this post. Having a heart defect does not define who I am. Although, it has shaped and molded me into the person that I am.

Some mornings, I stand and look at myself in the mirror and think, I wonder what I would look like without all of my scars. Everyone sees my largest scar, my defining scar as I call it. It’s the scar that has been opened and closed repeatedly for my open heart surgeries. I also have a few scars on my neck from catheterizations, two from where chest tubes have been placed and a scar on my groin from when they had to rush me onto life support.
Sometimes, I think about life without my scars. Then I slowly realize that I wouldn’t be alive. I wouldn’t have stories to relate to people with heart disease. I wouldn’t be able to empathize with people that are scared because they’re having heart surgery.

When I feel like throwing in the towel, like my heart medication doesn’t matter, that I want to skip my cardiology appointments or that I want to simply ignore the palpitations that I’m feeling, I quite often turn to music. In recent years, I quite often find myself listening to Fight Song by Rachel Platten.  Music has always made me feel better when I feel like giving up.

More recently, a struggle that I’ve been facing has been a diagnosis of anxiety. I don’t have a generalized anxiety disorder, and it wasn’t because I was consistently having panic attacks. My diagnosis has been diagnosed with a correlation with my congenital heart disease. It’s not that the surgeries have given me anxiety, or I have severe trauma from an IV (although, I had a terrible experience with IVs when I was younger and I can’t cope with the idea of getting one). It’s because there’s so much fear of the unknown. For the first time ever, there’s more adults living with congenital heart disease than children. At this point, researchers don’t know what adulthood looks like for people with congenital heart disease, especially complex congenital heart disease. I don’t know if I’ll live a full life, if I’ll have a stroke at 50 that’ll kill me, if I’ll need more open heart surgeries. Nobody truly knows. The one thing that comforts me is knowing that I’m not alone. I know my parents and sister are there for me. I have my grandma. I have my aunts, uncles and cousins. I know my cardiologist is there. I know people in the heart community are there. I’m strong, I’ve overcome four open heart surgeries and I can survive just about anything (even if I need to sit down and cry for a few hours every once in a while).

I know that my strength will always triumph my fear. Recently, I went to the emergency room because I have a hairline fracture in my elbow. The RN that was caring for me has cared for me in the past when my heart has gone into shock. She jokingly brought my pain meds out without a med cup. She looked at me and said, “I normally don’t do this, but you’re my toughest patient” and winked. Moments like that make my day. Moments like that provide me with comfort. They make me realize that I’m not alone. They prove to me that I’m going to be alright, because I have strength. My strength will help me get through all the negative in my life.

There isn’t a day that I don’t think about how different my life would be if I hadn’t have had four open heart surgeries. I often get, “I don’t know how you do it”. I do it, because it’s my route of survival and the only thing that I’ve ever known. My life is what defines me. In all honesty, it’s the same thing as dealing with my grandpa having dementia or my dad having a stroke at a young age. You just kind of learn to adjust to your life changes. I’m used to my annual echo, my appointments with my cardiologist and electrophysiologist, taking medication before I see the dentist and taking the necessary precautions to avoid illness.

I’m okay. I’m healthy. I’m strong. I can, and I will survive just about anything that I’m handed.


In the words of Rachel Platten, “I’ve still got a lot of fight left in me”. 

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