Waiting.... Just do it - better to wait (if appropriate) than cut. Cutting is is better when waiting more will start causing permanent damage to the heart. Don't freak out. Read, Learn, Plan....
Get a second (and third if necessary) opinion.Get good advice from more than one doctor. Echos are estimates. Skill of the tech and the doctor interpreting can affect the measurements significantly. Get a second opinion from a different practice. Do so more than once over time if you need to ease your mind. It will either confirm what you doc is saying or contradict his assessment which will then send you to a "tie breaker". Having another well respected doctor weigh in on my issues gave me comfort that I was proceeding correctly.
Blood Pressure - Lower is Better for BAV
I would think an Angiotensin II Receptor Blocker or ACE Inhibitor might be a good idea. Basically as low as you can stand without symptoms may extend the life of your valve. If you pass out (or even get light-headed) when standing up then that is too low.
Symptoms - Pay CLOSE Attention
I didn't think I had them. They sneak up on you and can be subtle. They can be attributed to "getting older" (Not for you but for some of us older than you). I wouldn't say I'm "Short of Breath" which my cardio almost twisted my arm to get me to say. I would now say that I don't have the cardiovascular stamina that I would expect. I feel my heart working harder than it should be with less exhertion than I would expect. I am breathing harder sooner than I would expect. I feel like I have to "take ONE very deep breath at the top of a flight of stairs" - I'm not breathing hard I just need that one extra deep breath. That didn't used to be the case.
Semi-Annual Echo (Annual at least)If your insurance will pay for 2 x a year echos then I would convince your cardiologist that twice a year is better than once (it will help to sooth your worry as it is a very reasonable timeline). If insurance won't pay twice a year then go for once a year unless you "feel" a reduction in your cardio capabilities.
Find a great doctor
This is key. Find a doctor who will talk with you regarding your personal research, BAV disease and the correlation to Cystic Medial Degeneration that leads to Aortic Aneurysm and Dissection. If he doesn't understand the correlation then find a different doctor. Do your research here too (not just on your condition). Talk with other docs, read, get referrals.
Be aware that you are more aware (and maybe worried)
I was/am more aware of my heart rate, chest feelings, cardio conditioning, "chest tightness", etc... than I was before I found out about my valve. I have to remind myself not to freak out when I feel something different. That "tightness in my chest" may be discomfort from a too spicy meal or may relate to the fact that I ate twice as much as I should have or I'm feeling a tremendous amount of stress from work (or heart issues) that day. I monitor myself - I wait an hour or two to see if it goes away. I remind myself what I ate or how much (sometimes too much). I check my stress level. I haven't had a situation where the feeling lasted beyond my self imposed time limit and sent me to the doctor. But I never would have noticed those feelings before my diagnosis 3.5 years ago. I'm not saying "disregard serious symptoms". I'm saying evaluate yourself. Be smart but know your own freak out levels and issues (and when you ate too much).
Heart Measurements
Consisent increases in Left Ventricular size are not a good thing. Please read the consistent here. I have 1st, 2nd, and 3rd echos within one month of each other (from different doctors) where the measurements of EF, EDD, ESV, Aortic Root were all different (not huge differences but some).
Consistent increases in Acending Aorta size are not a good thing. Same discussion as above.
Black and white measurements for surgical timing.... Before Dissection or Rupture! Not very definitive but true. If you have dissection at 4.8 then it won't matter to you that conventional wisdom says surgery should be 5.0 . This to me underscores the critical need for a good doctor. Also- size is relative. Depends on where you started (i.e. if your aorta is bigger than average as "normal" then 4.5 may not be a catastrophic deal. If you are a 100 pound female then 4.5 could be huge).
Consistent increases in measurements over time push the surgery date closer. Stable measurements over time confine us to the waiting room.
Perspective sometimes changes
Waiting didn't bother me too much. 6 month echos were just cautious because my doc didn't think we were in line for surgery for a few years (maybe). For some of us (not all) the change comes and the priority shifts from waiting to planning since surgery is dictated by decreasing heart function (i.e. increasing heart dimensions). I would rather still be waiting.... But I don't have that choice. Planning for surgery sucks. However, I am eternally grateful to my general physician who heard the almost inaudible murmur 3.5 years ago and sent me to the cardiologist. If I didn't know about my valve I wouldn't recognize the subtle symptoms I have and who know how much damage to my heart I would have let occur before I realized what was going on. And I still would have ended up in surgery - just in much worse shape.
Conflicting feelings. Sucks to be here. Glad it isn't worse. Glad I live in a big city with top heart centers and great docs and surgeons. Wish I was 60 just getting to this point rather than 41. Glad I don't have CHF due to an unknown BAV....
Anyway - I hope some of these ideas and thoughts help. It may be years before your surgery (maybe not). Either way my suggestion is to live your life, enjoy everyday, keep you eyes and ears open, be aware of symptoms but don't freak out.
Good Luck,
David
