How seriously concerned should I be???

[paiinc]

I am a 63 year old corporate executive with a history of congenital heart disease due to a bicuspid aortic valve and I have had three (3) strokes that have caused me to lose 90% of the use of my left hand and 10% of the use of my right hand.  My paternal grandmother had several heart attacks, had a pace maker installed, and, ultimately, died of a "massive heart attack" in her 80s.  My mother has heart disease, also, with episodes of severe atrial fibrilation for which she has been hospitalized several times.  She is 81.

I have always been active in sports and in reasonably good shape.  I am 6'1" tall and, prior to my open-heart surgery on June 22, 2009, I weighed 180 pounds.  I dropped to 161 after the surgury but now weigh in the upper 160s.  

I have been tested on a tread mill stress test in the past several times with good results and I have had several echo cardiograms and two heart cathertizations with differing degrees of mitral and aortic valve disease diagnosed.  I had a severe episode of syncope in the spring of 2007 in which my blood pressure (according to the EMT) dropped to 82/46 and I was hospitalized over night.  They could not explain the cause.

In August, 2008, I was experiencing worsening chest pain that did not seem to be exercise related and shortness of breath after climbing any stairs and, sometimes, at night right after I went to bed.  I went to a cardiolgist who did an EKG, echocardiogram, and a chemical stress test and was given a "clean bill of health with no discernable heart disease".  (I don't understand that one either.)  I was told I had no blood pressure issues or cholesterol issues.

In May, 2009, I went to a different cardiologist because of the same continuing problems.  He told me he didn't think my problem was serious but wanted to do an echocardiogram and a tread mill stress test.  I did not seem to have any problems during the stress test but afterward I was VERY dizzy and the alarms were sounding on the EKG machine.  It took them 30 minutes to get me back to "base line" so I could go home.  The cardiologist diagnosed "severe aortic stenosis" that had been going on probably ever since the syncope episode in 2007.

They did a heart catheterization which confirmed a problem with the aortic valve, discovered two coronary arteries with 40% to 50% blockage, a possible aortic root dilation problem, and one coronary artery that was naturally more narrow than normal.   They recommended immediate replacement of the value and that the two blocked arteries be bypassed.  This was done on June 22, 2009.  The surgeon reported to my wife that the valve was "shot" and would not have "lasted another six months."

The day after the surgery I developed atrial fibrilation which, after two weeks in the hospital, they finally reverted with paddles.  Since then, I have been in the hospital 6 times for 33 days with recurring A-fib, fluid on my lungs, high blood pressure (I never had high blood pressure previously) as high as 174/128 at times, syncope (I have passed out several time; once for 1 1/2 hours), severe inflamation of the lining around my heart and lungs, shortness of breath, and severe chest and left arm pain.  

During my most recent hospital stay (the week before Thanksgiving week I was admitted because my heart had been back in A-fib for two hours which spontaneously reverted in the ER), I underwent multiple CT scans, EEGs, x-rays, echocardiograms, nuclear stress echos, EKGs, and a heart catheterization.  

Their findings were that I had an "abnormality" on the left side of my brain but there was some disagreement among the neurologists as to whether the abnormality was contributing to any of my symptoms.  They found an abnormality on the front wall of my heart with the nuclear stress echo that was not there prior to the surgery and they found I now have a "complete right bundle branch block" on my EKG which was not there prior to the surgery.  They also found a high BNP level, sometimes as high as 496 which they cannot explain.

I am continuing to experience chest pain and occasional shortness of breath, sometimes with severe pain of my left or right arm.  I continue to have episodes of syncope (about once or twice a month).  One was after a session at heart rehab but none of the others seem to be exercise related.  I also have occasional high blood pressure inspite of the Lisinopril and Carvedilol I'm taking along with Simvastatin, Warfarin, and aspirin.  I'm still being followed by my cardiologist and my neurolgist but their attitude seems to be "let's wait and see".  

My question, which I've asked of them and received no real answer, how seriously should I be concerned about my continuing symptoms?  When they happen, should I treat them as emergency situations and go to the ER?  If I did, I would be in the ER two or three times a month.  My wife is beside herself with worry about me, the doctors will not allow me to return to work, and I don't know how to respond when these episodes occur.  I just spent another difficult night with dizziness (when I stand), some chest pain, and severe pain of my right arm from the elbow to the shoulder.  My blood pressure at 11:00 pm last night was 98/59 with 69 pulse and 94/60 with 63 pulse.

Please, would someone give me some idea of how I am supposed to respond to these ongoing symptoms and/or how serious they really are?

[grendslori]

I would certainly talk to someone about having an EP Study done to check out the electrical systems of the heart. Angina can sometimes be caused by other factors not related to CAD. There can be spasms in the vessels of the heart as well and the patient may have a perfectly normal cath study. Your passing out could be due to the issues with BP and you should probably have been given a Tilt Table Test. Try and go to a University Hospital if you can; they tend to see patients like yourself who have a much more complex history.

[joanincarolina]

I'd be real concerned. My first comment is that you absolutely need to know how to handle these angina episodes. Have you been advised to keep nitro handy? In my case I made an appointment with both my primary care doctor (Family Practice), my local cardiologist and my interventional cardilogist at Emory to specifically ask how to handle my episodes.Fortunately for me I have avoided going to the ER, so far, and the calmness for my family and I on how to handle these episodes and WHEN I need to call 911 as made all the difference in the world for us.It also helps to find out what the first responders (ambulance) can do for you; it varies between states and counties within states.Hope this helps. Joanincarolina.