Hello my fellow valvers: I'm in Limbo! Advice?

[Cococat]

Hi everyone,

Having known about my bicuspid, I got a little nervous about some chest pain last fall. Ended up getting a stress echo which I passed without pain, thought there were some ST depressions in recovery I was told. my cardiologist said that was due to the AS which he said was 0.8
Because of continued chest pain with exercise, I had a cath done in January which showed 0.77 Aortic opening, great coronary arteries, ascending aorta of 4.2. I was sent to a CTS who said: let's operate. however, I opted for 2 more opinions. the second doc reviewed all my echos, my cath, my history, and then reviewed the "evidence" with 2 other echocardiographers and discussed with my PCP. #2 said I had not hit the "sweet spot" for replacement. My valve is not that calcified and still "domes". My acending aorta is 2X the diameter of my pulmonary artery, but not to the 4.5 that would make them think about doing a replacement just for that. And my ejection fraction is good. The third doc agrees that I am not ready yet.

My problem is I get symptoms-not limiting per se-but they are definitely there. The docs really pushed me about the angina like symptoms- I think they thought the symptoms were not real. but I am not an anxious person, and they were not heartburn. I don't push my exercise regime to the point of this pain anymore.

Now I get a tightness/shortness of breath feeling when I hurry unexpectedly. I can exercise usually without any sob (shortness of breath). The sob is worse after eating-my cardiologist says this is not unusual. sometimes I get abdominal discomfort with exercise and I wonder if it could be I am compromising my abdominal circulation.

Did anyone else have these symptoms pre surgery? What were you told?

I know I will need my valve and aorta replaced though no one can tell me when. they all say they are willing to do it now, but advise me to be monitored for now.

thanks to you all in advance
Claire

 

[pellicle]

Claire

I can only report on my situation, but I did not get anything like you did when I had my bicuspid valve. Even later when I had the homographs valve replacement I only had heart enlargment (my heart walls grew larger with the muscle growth) . I didn't get pains.

The body system is complex and has many inter-related factors. Observation of your symptoms can be difficult as you have to strike a balance between observation and being hyper observent. Don't get too anxious as this can create symptoms in itself.

take things as easy as you can without stopping doing things altogether. Try to keep a diary, and that way you don't get to obsessed with the memory of it.

 

[epstns]

Claire - I had the abdominal thghtness after eating, and I also thought it could have been due to compromised blood supply due to my stenotic aortic valve. This issue is gone after surgery.

If your aortic valve area is actually .77, I am surprised that they did not tell you that you are now within the range where they would operate if you wish. That's what they told me when mine hit .80. I was told that, given my general lack of symptoms, I could wait if I wanted. Since I had already been waiting over 9 years, I just waited long enough to schedule surgery at a time when it was convenient for me.

I would discuss timing with the surgeon you trust. They may say that at this point it is your option, not theirs. IIRC, I think most major insurance carriers will cover replacement when your aortic valve area gets to .80 or less.

 

[Cococat]

Thanks Steve. Glad your pain is gone now. I was told I could have surgery if I wanted it, but 2 of my 3 opinions suggested I wait.
And they said it was up to me. I am continuing to observe and live my life each day

 

[Cococat]

I hear you, pellicle. good advice. Dont think of the AS until I do my daily walks and get the pains. If I did not push the speed or do hills, I would not have symptoms. A diary is also a good suggestion. thanks so much for your input.

 

[sood]

Claire,

All I can tell you is about my situation. And I recommend listening to what your body is telling you. my AS is only about 1.2, has been in the same range since I was 23 over 12 years ago. My aneurysm is at 4.8 at the ascending aorta. I met with the surgeon last year and he told me to wait. I didn't really have any symptoms at the time except a sudden sharp pain when I was once running a hill, pain in my chest. This led to the stress echo and ct scan. They said my pain was not heart related. Fast forward 9 months and I developed an irregular heartbeat and I am having minor chest discomfort when I don't excercise. They can't explain why. I am exercising moderately and have no issues then. Regardless I decided to have surgery May 3. No one knows your body better than you, my advice is to listen to it. They will replace my ascending aorta and most likely do a valve replacement with an on-x valve.

I hear you, pellicle. good advice. Dont think of the AS until I do my daily walks and get the pains. If I did not push the speed or do hills, I would not have symptoms. A diary is also a good suggestion. thanks so much for your input.