2/25/2013 2:06 PM
I was born with Total Anomalous Pulmonary Venous Return (TAPVR). I was rushed to Children's Memorial Hospital hours after birth. I've had 5 open heart surgeries total – first when I was 10 hours old, then when I was 6 months old, 8 years old, 13 years old and 17 years old. Children's in Chicago was like my 2nd home and now sadly I'm too old, so I go to Northwestern.
Because of my CHD my left lung has always been "sucky," never working above 10%. Six years ago it stopped working altogether. My everyday life is pretty much doing nothing because of the lack of energy, difficulty breathing & overall never feeling well. My last OHS did not solve the problem and we know my body rejects changes within a few months or years. So at the moment we’re just waiting so I can get on the heart/lung transplant list. My guess is that could happen within 6 years. I would love to meet other adults with TAPVR.