I too had a bicuspid aorta valve and an aortic branch aneurysm. My surgery was in December 2013. They prepared me for a valve replacement, but the valve had not calcified so did not merit a valve replacement. The aneurysm was repaired by the "David's Procedure", which ties into the aortic valve. You can read more about it and watch a video by googling "David's Procedure". I did attend cardiac rehab and contribute my recovery to that. Was very active prior to the surgery so was not excited about going, but it was the best thing I ever did. I had some "hiccups" along my initial recovery, because I was allergic to two of the medications they were giving me. I did experience Post Surgery A Fib and got blood clots in my legs and behind my eye within the first 2 weeks after surgery. After they got the water pulled off of me and had a cardio version to get me back in rhythm, I've been great. In fact, I went cross-country skiing 5 weeks post-surgery. Of course, I stayed on the easy trails and took it slow, but I was out there! While in rehab an opportunity came my way to volunteer for a program that I needed to be able to walk a mile and run a mile. I could walk the mile no problem, but I never had been a runner. One of the nurses and cardiac rehab worked with me, and I met my goal of running the mile and being able to volunteer for the program the June following surgery. I've never had any further problems, but I follow the cardiac diet closely and exercise is a priority for me. After several weeks of cardiac rehab, it dawned on me, that I too was a "heart patient" and always would be. It was up to me to do everything I could to protect that valve.
I was told at time of surgery that according to the size of the aneurysm, they estimated that it would have burst in about 6 weeks. I'm one lucky lady, especially since my surgeon said that the murmur was so slight, that most cardiologist would have just watched it. It was my primary doctor who had experienced the same thing a year earlier that detected the problem. I will be eternally grateful.
I live in Boise, Idaho and am part of Chapter 380.
In Joy and Gratitude
(208) 375-2408 wk
(208) 866-2469 cell
I understand your upset at not being told when the problem with your aorta was first noticed. My impression is you aren't seeking information so much as the opportunity to express your feelings. This is a good place for that and your support group should also be one.
I don't know if this will help but, as a former personal injury attorney, I couldn't help looking at your situation as one. Assuming that the doctors were negligent ("wrong") in not telling you, the question is did you suffer any damage. You may be personally upset by their conduct but did it cause you any other harm? Is your condition worse? Should any different action have been taken which would have improved your result? It doesn't seem so, since the course of treatment seems to be still to watch and wait. Maybe your next consultation will change this – but let's hope not. I hope these comments won't add to your frustration. Yes, you may have been treated shabbily, but if you can shift your focus to the fact you haven't been harmed, you may be able to move on more easily.
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