Marguerite53
Premium Level User
Hello! My name is Marguerite and I live in Oregon. I've been visiting from the outside for about a month and thought it was time to jump in. This is an amazing place. You have already helped me more than can be measured.
I was diagnosed with an aortic bicuspid valve in my late 20's and told I'd probably make it to my 70's without complication. Well, I'm now 50 and while I'm planning to make it to 70, it looks like I'll be doing it with a new valve.
In September, we moved from our home of 15 years (just locally, a downsize, 2 in college, 3rd a HS jr.). Simultaneously I was closing out my father's sprawling home to move him safely to a continuing care facility. Just after the double move (4 days apart, my stupid choice) I realized I was really huffing and puffing by the top of the stairs. A little bell went off in my head and I remembered my very first cardiologist saying "come in for an echo if you start feeling unusually winded". I was hoping that I was just in a self-designed state of exhaustion, but no. It seems that I have moderate aortic stenosis and probably need of an AVR in 1 to 3 years. (this after a fresh echo and nuclear stress test)
I got a copy of my second echo (unchanged from first). It states that mild concentric left ventricular hypertrophy is present. There are other numbers and measurements which I do not understand very well either. So I made an appointment to ask the cardiologist some questions, but came away with the same empty feeling as I'd had after the first visit. I did question the "heavily calcified with restriction in leaflet mobility" thinking it might mean I should reduce my calcium intake. He seemed more concerned about my weight and cholesterol (neither being perfect or way out of line) and seemed to suggest that my symptoms might be due to being out of shape. My PCP didn't think so. She commented to me that I would probably need the AVR within a year since there is some minor muscle damage already signaling a need. She is quite young and brilliant, I think, and later confided that the cardiologist scolded her about her assessment because it was not in her domain to judge.
So, my husband suggested a second opinion. I go in to see a female cardiologist of local fame on May 24. I am really looking forward to this and am hoping you can help me figure out what I need to ask her. She is already different in that she calls for a chest x-ray before the first visit.
While I'm sure that I'll be nervous when the time comes for surgery, at this point I'm more caught up in the "why can't we get it done yesterday" mentality. I don't want my impatience to cloud my thinking so any 20/20 hindsight would be greatly appreciated. Also, at this point I'm leaning away from the mechanical valve/coumadin and am anxious to talk to a doctor about the tissue choices. At what point did any of you first speak to a surgeon?
Ok! I'll let you go for now. Thank you for mulling through this long introduction! Your opinions and advice will be greatly appreciated.
Marguerite
I was diagnosed with an aortic bicuspid valve in my late 20's and told I'd probably make it to my 70's without complication. Well, I'm now 50 and while I'm planning to make it to 70, it looks like I'll be doing it with a new valve.
In September, we moved from our home of 15 years (just locally, a downsize, 2 in college, 3rd a HS jr.). Simultaneously I was closing out my father's sprawling home to move him safely to a continuing care facility. Just after the double move (4 days apart, my stupid choice) I realized I was really huffing and puffing by the top of the stairs. A little bell went off in my head and I remembered my very first cardiologist saying "come in for an echo if you start feeling unusually winded". I was hoping that I was just in a self-designed state of exhaustion, but no. It seems that I have moderate aortic stenosis and probably need of an AVR in 1 to 3 years. (this after a fresh echo and nuclear stress test)
I got a copy of my second echo (unchanged from first). It states that mild concentric left ventricular hypertrophy is present. There are other numbers and measurements which I do not understand very well either. So I made an appointment to ask the cardiologist some questions, but came away with the same empty feeling as I'd had after the first visit. I did question the "heavily calcified with restriction in leaflet mobility" thinking it might mean I should reduce my calcium intake. He seemed more concerned about my weight and cholesterol (neither being perfect or way out of line) and seemed to suggest that my symptoms might be due to being out of shape. My PCP didn't think so. She commented to me that I would probably need the AVR within a year since there is some minor muscle damage already signaling a need. She is quite young and brilliant, I think, and later confided that the cardiologist scolded her about her assessment because it was not in her domain to judge.
So, my husband suggested a second opinion. I go in to see a female cardiologist of local fame on May 24. I am really looking forward to this and am hoping you can help me figure out what I need to ask her. She is already different in that she calls for a chest x-ray before the first visit.
While I'm sure that I'll be nervous when the time comes for surgery, at this point I'm more caught up in the "why can't we get it done yesterday" mentality. I don't want my impatience to cloud my thinking so any 20/20 hindsight would be greatly appreciated. Also, at this point I'm leaning away from the mechanical valve/coumadin and am anxious to talk to a doctor about the tissue choices. At what point did any of you first speak to a surgeon?
Ok! I'll let you go for now. Thank you for mulling through this long introduction! Your opinions and advice will be greatly appreciated.
Marguerite
