So, after a day of tests I met with my heart surgeon. I'm still processing all the information but I think where we're at for now is watching and waiting on my aortic valve, with management of my aortic aneurysm that primarily involves blood pressure control. I will be meeting with a new cardiologist soon to determine a course of medication(s) and perhaps other treatment options going forward.
This is not what I expected and I will need some time to process all the information. I do have concerns about what has taken place relative to the degree to which this particular surgeon is sensitive to the special needs of BAV patients as well as a seeming disconnect between what he told me when we first met vs. what he said yesterday. There also appears to be a discrepancy between what he told me and what I read over and over again in the literature about BAV and the severity of aneurysms.
For example, he seems to feel that my aorta is not a big concern at 4.3 cm. However, if you read the BAV literature, studies indicate that anything over 4.0 or 4.5 is serious enough to warrant replacement at the time of AV surgery in BAV patients. Ross, the administrator of VR.com is BAV and had his aorta rupture at 4.7 and it almost killed him.
Another disconnect has to do with the AV. When we first met he indicated that I was in the severe range factoring in my body area (my size.) However, yesterday he didn't seem much concerned about the condition of the valve.
I'm sorry to say that I came away with the feeling that they process so many sick people through HUP that they may not be properly responsive to someone like me. I felt as if yesterday's appointment had little relation to the previous appointment.
Well, at minimum I need to lower my systolic blood pressure in order to take stress off of the aorta. So I will make an appointment with a cardiologist at HUP. Hopefully this person will be up on the BAV literature so that I can run some of my concerns by him.