I am 33, almost 34. I was diagnosed with stage 3 CHF on Valentine's Day. I also have a complex congenital condition called C.ongenitally C.orrected T.ransposition of the G.reat A.rteries (C.C.T.G..A). What that means is that my left and right ventricular are inverted but that my arteries are also inverted so it (sorta) fixed itself. These days they have a surgery to fix this in infants, only like three surgeons do it. Adults are not eligible. I had two open heart surgeries as a kid though, a PA banding, a VSD repair, different things.
Growing up my heart was pretty normal. Always seen my special congenital cardiologist but meh everything was good.
Didn't even go into the hospital for heart related stuff, I hit my head and had a big bump so went to get checked for a concussion and they found it. I've been a complex chronically ill medical patient for years at a big University hospital. They missed my heart failure for a long time. Years. Years and years.
I've spent five weeks in the hospital this year. I'm not an LVAD candidate. I'm not a transplant candidate. They said that it was because I was overweight, so my goal was to get under 200, but after losing 70 lbs, apparently there are *other* reasons (my multiple chronic illnesses and medication) so that just sorta makes me feel like my life isn't worth anything to UNOS or the medical world.
Just struggling a bit but no one to talk to. None of my friends understand. Just thought I'd poke in and see if anyone could relate.
thanks xx
Caitlyn Ellery
Los Angeles, CA
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Caitlyn Ellery
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