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Welcome! Adult CHD Warriors

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


big feelings for a big year #CHD #adultchd #asdpapvd

this year as been especially tough.
I have spent all year back and forth to specialists and tests, getting jabbed and prodded.
I was diagnosed with ASD & PAPVD (atrial septal defect & Partial anomalous pulmonary venous drainage) in March this year.
I had my first echo in January, which showed only a small amount of defects that where not worrisome. but the cardiologist ordered more tests as he suspected an ASD and PAPVD had been missed.
he was right.
after a transesophageal echocardiogram, cardio MRI and cardio CT angiogram everything was 100% confirmed & I was told the daunting news of my need for open heart surgery to repair these congenital defects.
I was put on the public waiting list in May and finaly have a date or my surgery which is in January.
all in all it’s been a complete loop of doctors and being tested this year which has been stressful especially seems I never knew I wasn’t right and I have never even been admitted to hospital for anything in my life.
I have a huge journey ahead still with my recovery and a huge mental hurdle with another year given to this condition and it halting so many of our goals and ambitions. but I also want it to hurry up and happen so I can recover and move on from this part of my life and get back on track and keep the mental breakdowns and what not to a minimum again.

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