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I had an aortic dissection four months ago. The type A was repaired by a cardiothoracic surgeon during open heart surgery. The Type B portion in the abdominal part of the aorta is being treated with blood pressure meds and a beta-blocker. I have had several follow-up chest and abdominal CT scans since my surgery.
For awhile it seemed as if no doctor was tasked with caring for my aorta. At one point I was asking questions like "how much weight am I allowed to lift?", "what sorts of activities and exercise can I do and what to avoid?", etc. I asked my cardiologist and he deferred to my cardiothoracic surgeon. He deferred to my cardiologist. Catch 22.
It seem I was not in anyone's specialty and I felt abandoned. I did a lot of reading on medical forums and medical sites on the Internet and learned more about my condition.
Have others who survived aortic dissection had the same kind of problems getting information from and getting questions answered by your doctors? Am I the only one who feels like no one is "in charge" of my condition?
Also, on a number of medical sites I found treatment info that said that dissection survivors should have CT or MRI scans at three months, six months, and one year after surgery. What was your experience - did you have all these scans the first year?
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