I was born with Truncus Arteriosus, and am 30 years old. I've had a number of repairs (PVRs, and AVRs). My main concern is that I've been having increasing symptoms. Initially I had worked up to a good exercise regimen since my last PVR (in '05). But in 2007 I started having chest pain and lightheadedness towards the end of the cardio part. It progressed so I had to do less and less, the symptoms came on sooner, and were followed by fatigue and abdominal swelling. It's gotten to the point now, where I'm fatigued most of the day (I do feel better on days I rest), I can do very little activity without getting short of breath and severely lightheadeded. I get pain up the left side of my jaw and down my left arm. I also had to start sleeping with my bed elevated, and I have increased my pillows on top of that to 4 pillows.
I have mild narrowing at the top of my conduit, mild pulmonary artery stenosis. I have severely increased velocity through the conduit with exercise. I have mild aortic stenosis. (My mechanical valve is 20 years old). I have trivial aortic regurgitation. I also have diastolic dysfunction and right volume overload. The last echo indicated increased mitral valve velocity, and possibly trace regurgitation.
Despite my severe symptoms, and all these issues, my cardiologists can not pin point what exactly is causing my symptoms. I'm wondering if the aortic valve is going bad. Is it possible to be severely symptomatic without obvious clinical signs? Or is the diastolic dysfunction and right volume overload indicating there is something wrong with the aortic valve?
I've had these increasing symptoms for several years, and the cardiology tests just gradually show changing signs. So I know it's not actually a heart attack. I just have similar symptoms to one. And I know medical personnel freak out with chest pain symptoms. But I've been evaluated, even recently, and just show chronic changes.
Thanks for your input.