BAV Symptoms or HBP Med Symptoms?

[JoeyBAV]

Hey everyone! I am new to this awesome site and have to admit some trepidation as I am staring at AVR in the coming years (or maybe months). I am 53 and I was diagnosed with BAV back in November 2016 with a 4.8 ascending aortic aneurism. I have had a murmur since childhood but no cause was ever found. I have thought about second opinions but haven't aggressively sought one yet. I think I may also be having some symptoms. I get tired a little more easily (something I was attributing to age and weight gain) but I can go out and walk 2 miles at a pretty brisk pace, up and down hills with little trouble. The docs have told me to not do intense exercise and keep my heart rate under 120. I am on Diovan for HBP. Every now and then, when I carry something heavy, my heart will pound shortly after setting it down. I have had that on occasion since I was put on the Diovan back in my late 30's but its more frequent now but I am more out of shape since the docs stopped my training. Also, I lost weight about 2 years ago and my BP was so low that I was getting nervous about taking the BP med. I weaned myself off of it and my BP stayed in the normal range for 3 months after stopping it with NO heart pounding. Once my BP crept up again and I started back on the Diovan, then the pounding started again on exertion.

I have lived a VERY athletic and active life playing football, basketball and baseball in high school, baseball in college and competitive tennis as an adult. Having to stop running, training and playing tennis and golf has been depressing. I have thought I may go ahead and have the surgery if it would help me feel better and get back to the active life I was leading. The docs seem to think its years away for me but if I have 10 years of inactivity, I will be older, in worse health and will have not really enjoyed those 10 years if AVR could have allowed me to get back at it. The stories on this site are very encouraging and inspirational. I have always thought of myself as a glass is half full kind of guy but I have to admit, this all has me down and a bit nervous. I so appreciate what everyone here has been through, is or will be going through. and your willingness to share to help others.
Thank you all for that.

 

[epstns]

Hi, Joey, and welcome to The Waiting Room - the virtual room where many folks await their own turns at valve surgery. I'm not a doc, so be sure you take what I may say as just the opinions of another layman. I read that you have a BAV, but you didn't state any statistics about the valve. Do you have any stenosis or regurgitation? These conditions may accelerate the path to replacement for you. Also, did your doc mention where his/her trigger point is for surgery to repair the aneurysm? This, too, will affect your path to the OR.

One other thing I would ask, is whether you have considered a second opinion. If you have a preference for surgery sooner rather than later, and if your current doc is not of the same mind, perhaps another doc may have a different opinion. The reason I suggest a second opinion is that the instruction to stop training and limit your heart rate to 120 BPM or less seems severe for a patient not already scheduled for surgery. I'd ask the doc's rationale for the restriction.

I was about your age when my BAV and stenosis were diagnosed (age 52). I was able to continue life, including running, weight lifting, etc., with minor modifications for another 11 years before I opted for surgery. I did not have an aneurysm, though, and that may be the major factor driving the limitations for you. I'd like to ask the doc why he feels that restrictions like these are appropriate unless he feels that you are closer to surgery than you think.

 

[JoeyBAV]

Thanks Steve. I have considered a second opinion and am considering having it done soon. I have a BAV with "a little leak" according to me doc. No stenosis on my original diagnosis last November. I also have a dialated aorta and its at 4.8. Cardio said "we need to talk with a surgeon if it gets to 5.5". I have controlled HBP. They will NOT change my medication to try to help control it better. They just want to increase it and add to it. My systolic is usually 125-160 and my diastolic tends to stay in the 65-80 range. I have heart pounding sometimes after eating or when carrying something heavy for 20 or 30 steps. I wouldn't say I'm short of breath but my heart just pounds after I put down whatever I am carrying. Its weird. I have had some degree of this symptom for 15 years (since I started BP meds). I am hopeful that getting the valve and aorta fixed will end those symptoms.
I have ZERO baseline metabolism so limiting my workouts is causing me to gain some weight even eating pretty healthy. Hopefully, will pick a good cardio to give me a second opinion.
Thanks again for the feedback.

 

[ClickityClack]

I've been told by 2 different cardiologists and my surgeon that 5.0cm is the generally accepted threshold for surgery if a patient has BAV. Likewise, 5.5cm is the threshold for those with a normal aortic valve.