About Me (In My Own Words)
I was surprised by this diagnosis earlier this year. My family doctor had sent me for an echocardiogram out of what he said was an abundance of caution. My doctor was trying to understand why I was having so much trouble sleeping and the extreme fatigue I was experiencing. A sleep specialist had suggested it could be due to many things, including heart disease. My older brother had heart issues late in 2024, unrelated, but my doctor decided to rule out any heart issues with an EKG and echocardiogram.
I suspected they found something wrong while they were doing the test because they started asking me a lot of questions about whether I was in any pain and then they asked me to stay after the test so she could speak with a doctor.
The results where shared with my family doctor and he'd discussed them with me within a couple of hours. They'd discovered that I had a bicuspid aortic valve with severe aortic dilation.
I met with the surgeon for the consult early June. He suggested doing a valve sparing aortic root replacement. This has changed from what I was initially told by my cardiologist who said I'd be having the Bentall Procedure and they would be replacing the valve with a mechanical valve.
The surgeon is 80-90% confident that my valve can be saved. This sounds really good but I'm still processing the new information including what the procedure will involve.
I don't have a surgery date . I was told at that meeting it would be within the next 4-6 weeks (so by mid-July). A follow up discussion with the scheduling team indicated it likely wouldn't happen until late summer or even September.
July 2nd Update - I received a system notification that my surgery is scheduled for July 21st. But I am now listed in the system for a Ross Procedure. This has caused a lot of additional anxiety because no one has spoken with me about this change.
This is heart defect and the need for a major surgery is a shoke. Thi is the second major organ with a birth defect that has contributed to the need for corrective surgery. The first involved neurosurgery, it wasn't a good experience because I was young and there wasn't a lot of resources on the condition. I wasn't well informed prior to letting them do the surgery and there were a number of complications that have contributed to life-long chronic pain. I'm hoping this goes better but I'm uneasy about the lack of communication that has been happening.
More Info About Me & My Heart
More About Me
-
I am from:
Edmonton, Canada
-
I was diagnosed with:
Aortic Regurgitation
Bicuspid Aortic Valve
Aortic Aneurysm
-
My surgery was:
Aortic Valve Repair
Aortic Aneurysm Replacement
-
My surgeon is:
Dr. Roderick MacArthur
-
My hospital is:
University of Alberta - Mazankowski Alberta Heart Institute
