feels like it's a heart attack, but it isn't

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.

[Sunbeam80]

Does anyone have similar symptoms with either diastolic dysfunction or mild aortic stenosis or a combination of the two?

[ed34]

What tests have they recently done on you? An echo scan will show whether you have valve regurgitation and show if you have any abnormalities with regards to wall thickness or chamber sizes. An angiogram can obviously detect any blockages in the coronary arteries and check the pressure in the heart/ aorta etc. A stress test can reveal many things also.
Does your EKG show any changes when exercising? There are a battery of tests which could be run, so I was just wondering which ones have been done?

[Sunbeam80]

My last stress echo was beginning of March.  Very symptomatic, but the EKG itself didn't show any heart attack.  My coronaries were checked several years ago, and the only abnormality was the circumflex and the other artery are switched.

The stress echo indicated increased velocity through the conduit.  The echo they did two weeks later indicated right volume overload and increased velocity through the mitral valve.  They are unable to get a good visual of the aortic valve or pulmonary valve.  I also have had a chronic small pericardial effusion at the bottom of the left ventricle.  This has been chronic since October.  As I mentioned before, my echos are also noting increased diastolic dysfunction.

My blood pressure in my left arm is almost non-existent.  It is very hard hard to hear.  This is new, but I don't know if it's because of my inability to exercise, or if what's causing my inability to exercise is causing the faint blood pressure.  Even in the right arm the pressure is faint, but at least audible.  They often have to use the pulse in my wrist to get the reading.

I recently had a lung scan done, which was unchanged from a lung scan a number of years ago.  The last cath I had done was back in '09.

[grendslori]

If you have a diastolic dysfunction you can have the symptoms you are having.