Mended Hearts Open Forum

Hello,

I have been on my heart journey for over 13 years now. I got diagnosed with Hypertrophic Cardiomyopathy at age 5 but I had been having symptoms even as a baby. The reason I was diagnosed is because my father needed an emergency septal myectomy and valve stabilizer (he had no symptoms until a few days before his surgery), and I had the same genes he had. By the time I turned 10 I needed a septal myectomy too, I had my surgery done by advocate children's heart institute and had my icd placed during that surgery as well. I didn't really ever start to "bounce back" like my doctors said I would and about a year post we noticed I had a hole in my heart from the surgery as well as thickening coming back into my ventricle, for reference when I had the surgery my thickness was 2.3 cm and about a year after it had gotten that thick again (right now it is around 4.3 with no obstruction.) By the time I was 13 advocate transferred me to riley's in indianapolis to be listed for transplant but they wouldn't because I lived too far away plus the doctors where scared with covid happening (I was too). By 15 I was able to be transferred to Lurie Children's Hospital in Chicago and went through a few years of testing and seeing how my heart has been doing. Before I was listed for transplant I had already been diagnosed with end stage heart failure at age 13 as well as a slew of electrical complications and my vsd on top of HCM and my doctors knew it was finally time to get me listed. On my 18th birthday August 29th I was listed status 2 pediatric and the adult equivalent. By February I had just started sotalol and I went into my first recorded atrial rythym, thankfully I paced out of it but my doctors decided to upgrade my status and UNOS agreed with special circumstance since my hr and bp run so low I can't be on milorone and my doctors don't want me on an lvad. I am currently status 1B pediatric and adult equivalent and I am very nervous for my transplant, I asked if there where any support groups and I was led this way. I am in a few groups on facebook as well.