Congenital BAV, 50 years old

[Guest]

Hi I am new here. Having been born with a BAV condition, I pretty much ignored it after I turned 20. I went for an echo in March due to symptoms that could have been from the BAV. (shortness of breath, tightening of the chest when exercising, light headedness) and it came back with moderate stenosis. I was going to the gym regularly and even took spin classes until I had a worrisome breathless episode. I also have anxiety, so many of the symptoms could be due to that. Is it possible to get these symptoms from job related stress? I sit at an accounting desk, deadlines etc. Also, what experience have you had as far as time frames, going from moderate stenosis to needing a replacement? My cardiologist consult has yet to be booked, unfortunately. That's the way of the world where I live.

Thanks
Rosalia

 

[Paleowoman]

Welcome to the forum Rosalia. I'm pretty sure that everyone is different and will have a different timeline from moderate stenosis to needing a replacement. For myself, I was in moderate stenosis when I was in my early 50s. No symptoms at all. I went to severe stenosis when I was 60. Still no symptoms but I had my BAV replaced at that point.

 

[MrsBray]

I was diagnosed at 33 with moderate stenosis & BAV. "You'll need surgery when you're 65ish. Come back in 5 years." No known symptoms

Age 38, still moderate, but "Come back in 2 years" No known symptoms

Age 40, borderline moderate/severe, "Come back next year." No recognized symptoms

Age 41, closer to severe than moderate, "Come back next year" No recognized symptoms

Age 42, severe, talk to a surgeon. Surgeon said, "Not yet. Come back in 6 months." AVA 1.1 SOB, fatigue

Age 42.5, severe, talk to a surgeon, "Not yet. Come back in 6 months." AVA 0.9 SOB, extreme fatigue, palpitations, difficulty staying warm

Age 43, surgeon says, "OK, now is good." AVA 0.75

It sucks, because it's not like we can get more exercise or change or diet or take a pill and it'll get better. Looking back, even WAY back to my early 20s, I had some signs and symptoms - aural migraines, dizzy spells, extreme dislike of physical education... But everyone is different! The important part is to stay as healthy as you can, taking pre-med for dentist appointments, seeking medical attention for anything other than a common cold (especially strep throat!)

People here on the forum are really helpful. Here's my pre-surgical advice - DON'T READ ANYTHING ON WEBMD!

Meredith

 

[epstns]

It sounds like you're starting on the same path I followed at your age. I was diagnosed with "probable BAV" and moderate to severe stenosis at around age 52. I had no real symptoms other than fatigue, tiredness beyond my years. I was still running daily and going to the gym 5 days a week with little problem.

Over the next 10 years or so, I just kept on with annual echo's and did all my activities. I kept an exercise journal, and noted that over time, my time per mile was slowing. By age 63 my cardio and I decided that it was time for replacement. That was 4 years ago, and I'm no longer running (knees just won't allow it) but I still go to the gym 5 days a week and do all the other things I want to do.

The first 8 or 10 years between diagnosis and surgery weren't too bad. The year or so just before surgery was a slow decline but still I probably did better than most guys my age. The first year after surgery was rough - had some complications following surgery, but after that, life is good.

 

[rosalia]

Thanks for your responses! It sounds like I have a few years yet, anyways. I will just keep on doing what I am doing then, listen to my body, and try to lose 20 lbs. I guess that can't be good for me, lol. I am fairly active but really enjoy eating - too much. Any thoughts on weight?

 

[Bonbet]

Hi, Rosalia:
I heard a murmur around 49/50, took a few years to get BAV diagnosis. Around 2012, age 59, started to be moderate- severe, and now at 62.5 it is still moderate/ severe
( depending on whose echo you read.) sounds like you have the luxury of time. My recommendation is to be prepared to be your own staunchest advocate. The ACC/ACH 2014 updated guidelines are online. They delineate standards for intervention. It would be great to familiarize yourself with the applicable guidelines. Then you can get your records and track yourself.
Regarding weight, I have lots of experience with diet, exercise and nutrition. The bennies of dropping a few pound now are huge. It will be less strain on your heart, and contribute to a better recovery post surgery. I didn't call it a "diet" I said I changed my relationship with food ( not easy, foodie family son's a chef.) other strategy was to prioritize excercise. It is the first thing to get scheduled and the last to postpone. Let me know if you want more eating and moving strategies. Bonbet

 

[Dodger Fan]

I had echos every 2 years from 1998-2014. In 2014 they said, "Come back next year". In April 2015 they said, "Come back in 6 months". It looks like Mrs. Bray came back for 2 echos 6 months apart before it was time. Anyone have more than two 6 month echos before it was time?

I am a law enforcement officer. I have had a goal to get on a task force for my whole career. I finally got a spot. They are hard to come by. Take home car, plain clothes, and complex investigations. I start in October or November. My first 6 months echo is 11/6/15. I'm hoping I get a little bit of time to prove myself useful before I have to bail for 2 months or so for surgery. I think my position will be protected by law but I still want to prove myself before my AVR.