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VSD corrected but no one DX' Bicuspid Aortic Valve
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VSD corrected but no one DX' Bicuspid Aortic Valve

VSD corrected in 73 at New York Hospital...at 43 I have about 10 diseases...the latest Addison's went undiagnosed until an Adrenal Crisis, Premature Ovarian failure, Highly sensitive CRP was 8.1 and I could barely make it up the stairs it dawned on me: A family cardiologist told me about 15 years ago that during the VSD repair he believed the surgeon punctured a part of my heart directly in back of the area they were repairing.  I thought well thats great and remebered that they wanted to do a post operative catherization(purely diagnostic) after surgery and my parents said "Are you kidding, hasn't she been through enough?" I was all of 7 and had undergone the open heart surgery and a prior cath...to determine that hole was dead center and mixing the blood coming and going to the heart.  When I was 35 I had a TEE (HELLISH) and had a lot of medical problems like thrombosis and an infection post operative...(forget what they call it, I have no memory these days)  Anyway docs said hey you have a Bicuspid Aortic Valve that somehow went undiagnosed or detected since birth....Considering my heart was operated on, heart lung machine and echoed to death how could this go un DX'd?  We found it also because after years of not having any murmur....(post surgery) Docs started faintly hearing something they did not like. Also they could not find the patch on Echo which only a few years from that point was visible?

HELP
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I can't answer your question directly except to say that things go undiagnosed all the time. My daughter was 3 when she developed Juvenile Rhuematoid Arthritis. We were treating her for that disease, without knowing for another 3 years, that she had a congenital form of heart disease that was a terminal form of heart disease!! She was at the hospital clinic and emergency rooms so often that everyone working in those departments knew my husband's social security number by heart, but they didn't know about the heart disease. It happens.
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