Amanda’s Story

I was born with Tetralogy of Fallot. When I was five months old, my parents traveled to Edmonton where I received open heart surgery. During the surgery, when repairing my VSD, my Bundle of His was nicked with a suture. I went into third degree heart block. I then received a pacemaker in my abdomen and eventually my heart repaired itself (which is not uncommon according to my cardiologist)to the point where I only have a second degree heart block when I exercise.

Now I am sixteen and since the first surgery, I have not needed another open heart surgery. However, I have had a surgery to change the pacemaker and I will need another one again in a couple years where I’ll get an trans-venous pacemaker put into my shoulder.

Although living with a heart condition can sometimes be difficult, it is manageable. Thanks to CHAMPS camp, I was able to meet other kids with CHD’s and they empowered me to become more confident in myself and the way my heart condition affects me. For the most part, I am able to keep up with others in my gym class aside from intense workouts or a lot of sprinting. Outside of school, I dance about twice a week and am able to do everything any of the other dancers do.

Sometimes living with my heart condition can be just as emotionally trying as it is physically. In the past, I have struggled with body image in terms of my scars. I used to try to wear clothes that completely hid them, but I now I know that they’re a part of me and my story. I have grown to love them because I see them as part of my identity. They are a positive reminder of strength and resilience. Also, I find myself having illogical fears that somehow my health has gotten worse, but knowing that I have such amazing doctors and nurses like Dr. Kakedakar and Dr. Pharis, always helps ease my mind.

As well as being in dance, I am an avid reader. Recently I found a book at my local library called Nowhere Near You by Leah Thomas. It has a main character with a pacemaker. Although it’s not super realistic as it is science fiction, it is still nice to read a book with a protagonist who just happens to have a heart condition. I highly recommend it to anyone who reads YA and has a pacemaker or knows someone with a pacemaker.

Overall I am living successfully with my heart condition and I honestly cannot imagine my life without one. It has become a part of my identity and I am proud to know I have persevered through a lot and came out stronger for it.

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