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By submitting your story and/or photo to ACHA, you are giving permission for your story and/or photo to be displayed on our website. The stories on this page are the property of the individual who has provided it. Stories may be edited for content. The experiences and opinions expressed are solely those of the individual, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied within these stories.

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Brittani

Feb 25

Posted by: ACHA
2/25/2013 2:06 PM  RssIcon

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.

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