Hi! I wrote about growing up with tricuspid atresia and how that's affected my adult life in an essay for The Wall Street Journal. Sharing here in case anyone's interested! Thanks. Essay | My Heart Defect Was Repaired by Age 4. But Was I Cured?
I’m Amelia! I have Transposition of the Great Arteries with Mustard procedure still in place. I was born in the 80’s when it was still too risky to switch back the arteries. They have now decided as an adult to leave my mustard procedure as it is. I’ve had a total of 7 or so heart surgeries and 3 open heart. I just had my most recent open heart surgery in August.
I myself love to write. I’m a community leader and contributer for The Mighty and run my own blog and instagram page. I also work with high school kids who have disabilities as a paraeducator.
Introduce yourself and tell us a little about your heart journey and a bit about yourself.
#chdwarriors #CongenitalHeartDefectDisease #ChronicIllness #Disability #HeartDisease #adultchd #adultchdwarriors #TranspositionOfTheGreatArteries #HypoplasticRightHeartSyndrome #TetralogyOfFallot #HypoplasticLeftHeartSyndrome #CongenitallyCorrectedTranspositionOfTheGreatArteries #mustardprocedure #senningprocedure #TricuspidAtresia
Isolation.
Right now it feels ridiculous. I'm 33. I know that people older than me are at work today, and it feels completely awkward.
It's nice, but it's going to get lonely quick.
It's necessary, but it's feeling very over-dramatic.
It's recommended, even mandated, but super irritating.
It's letting others care for you when you know you are perfectly capable. (I hate this.)
Honestly, this is chronic illness though. Isolation. Lonely. Over-dramatic. Irritating...
It's living with something you can't explain fully.
It's having restrictions that feel stupid.
It's trying to remember what you need when you feel like everyone else is judging you.
It's avoiding a sickness that is no big deal for others, but could ruin your life in one swoop.
It's a constant anxiety and worry and isolation....
Isolation is complicated and simple in one.
Day one has been easy and so, incredibly hard too.
I'm not a fan, because I'm 33.
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