Aortic Aneurysm & Bicuspid & Heart Palpitations

I had a complete aortic dissection in June 2015 which I barely survived after two emergency open-heart surgeries at UCSD in La Jolla California. If you have a dissection, you're gonna know it IF you survive that long. It's the most excruciating pain you've ever felt and it feels like someone is tearing the skin off your back all the way down the back of your legs. Call 911 if it happens. In the meantime, don't wait. I would very aggressively pursue a surgical option knowing what I know now. I did not know. I had a problem until I dissected. But then it's too late. I did not have my will, my healthcare directives, my power of attorney or my other critical financial documents in order for my wife and family. I was 50 years old and I had 3, 6, and 9 year-old kiddos waiting for their dad to come home from California in a body bag. I understand that you are very active and you're used to being very active, but you need to get used to not being super active until you address this life-threatening condition. It's simply one of the most lethal medical conditions you have because once you dissect you can exsanguinate in 20 to 90 seconds. You're doing the right thing by asking questions, but I think you will likely wind up having open heart surgery to repair the aorta as well as the bicuspid valve. The great news is is there is hope because you know you have a problem. That is 95% of the solution is recognizing that you have a problem and putting a plan together to fix it before you dissect. Once you dissect the mortality rate skyrockets. You're gonna be fine, but you need to listen to your doctors and you need to set aside your own need to exercise relentlessly in lieu of living longer for your family and yourself. The sooner you get a surgical solution to this problem, the better off you'll be in the long run. You do not want to deal with this emergently. I've done it and I wish that I had knownI had a problem before things blew up in the middle of the business trip in 2015, 1,600 miles from home. Peace and feel free to reach out to me off-line at my contact info. You're gonna be fine.

I have palpitations too and they're most concerning. I wore a heart monitor for two weeks--after echo, CT, and transecho--and apparently there was no problem. But it's weird to feel your heart jumping around, knowing you have an aortic aneurysm. It's such a surprise to discover you have this condition. Sort of changes your perspective on things. Good luck to you--and dial back the extreme exercise. Meditation???

I so appreciate everyone's contributions on this topic! I have heart palpitations with my BAV and ascending aortic aneurysm as well. They come and go and seem to happen more at night when I'm trying to fall asleep. Maybe it's my mind racing along with my heart! I love my Peloton and try to keep my heart rate under 140 when working out. Before diagnosis, I was easily up in the 150s/160s but have dialed it back. Also do light weights (no more than 15 pounds) vs heavy lifting. Definitely feel a little more winded when going up several flights of stairs (but I've never liked stairs!). We are all on a journey and it's great to have companions who have been there before and are going through it now. Thank you!

I completely understand about having a lot of bottled up energy and being ready to explode. When I just can’t stand it, I either get on my stationary bike or treadmill. It’s easier for me to control my heart rate indoors. If I’m riding or walking outdoors, it’s harder for me to keep in check. Best wishes to you!

I had 26000 PVCs daily until I had a heart ablation and it brought them down to a few hundred. I too have the aneurysm..4.4… and BAV.

Wow. That's incredible. I will keep that in mind and try to track what I'm feeling. Thanks for the info.!