Beha
Well-known member
Heard pretty much the same thing they told me in Texas a couple of months ago before I moved: Pulmonary Valve definitely needs replacing, Aortic valve is leaking but they arent sure what to do about it yet (it needs something sometime but- repair? replace? wait till the next inevitable PV replacement (im going tissue) and replace it then?)
Highlights:
My heart is apparently very photogenic and they asked if they could use my Echo (2 & 3D) images in a research study- (I said "sure!"). 3 or 4 different people came in and said things along the line of "wow those are some great images".
so now they want: a CT scan (well they wanted a MRI but the metal rods fused to my spine made that a no no); a Nuclear Stress Test, A Pulmonary Function Test, and they want me to go to the genetics clinic and get screened....they think I might have Noonan's syndrome (which apparently (my mother just told me) years and years ago my pediatrician thought I might have but eventually determined I didn't have enough features of (I clearly don't have any of the mental disability which is generally present)). If I do have it I am on the very high end of the spectrum. It would explain the concurrent PV and AV problems (concurrent PV stenosis and aortic regurgitation is apparently pretty rare)
so hopefully I will be going back down to Emory (6 hour round trip) one day next week to get all that done and then onward to surgery.
If there is room in the surgeons schedule we are looking at December 16th (the nurse said she thought there might be 1 open spot they could put me in) if not then then probably the week after Christmas.
Everyone was really nice and seemed on top of their game so I'm feeling pretty confident.
The nurse practitioner was GREAT about answering all my questions and addressing my concerns. Apparently she used to do pediatric ICU nursing and took care of me 22 years ago when I had my first surgery! Awesome!
She made me feel alot better, especially about my back. She even said she would make sure that they put extra padding on the operating table for me and gave me extra muscle relaxers and anti inflammatories afterward! Fantastic!
im really freakin tired.
Highlights:
My heart is apparently very photogenic and they asked if they could use my Echo (2 & 3D) images in a research study- (I said "sure!"). 3 or 4 different people came in and said things along the line of "wow those are some great images".
so now they want: a CT scan (well they wanted a MRI but the metal rods fused to my spine made that a no no); a Nuclear Stress Test, A Pulmonary Function Test, and they want me to go to the genetics clinic and get screened....they think I might have Noonan's syndrome (which apparently (my mother just told me) years and years ago my pediatrician thought I might have but eventually determined I didn't have enough features of (I clearly don't have any of the mental disability which is generally present)). If I do have it I am on the very high end of the spectrum. It would explain the concurrent PV and AV problems (concurrent PV stenosis and aortic regurgitation is apparently pretty rare)
so hopefully I will be going back down to Emory (6 hour round trip) one day next week to get all that done and then onward to surgery.
If there is room in the surgeons schedule we are looking at December 16th (the nurse said she thought there might be 1 open spot they could put me in) if not then then probably the week after Christmas.
Everyone was really nice and seemed on top of their game so I'm feeling pretty confident.
The nurse practitioner was GREAT about answering all my questions and addressing my concerns. Apparently she used to do pediatric ICU nursing and took care of me 22 years ago when I had my first surgery! Awesome!
She made me feel alot better, especially about my back. She even said she would make sure that they put extra padding on the operating table for me and gave me extra muscle relaxers and anti inflammatories afterward! Fantastic!
im really freakin tired.
