Hi Spookygal and welcome to the forum.
I'm sorry to hear about your diagnosis and that you are having such a hard time dealing with the referral to surgery. Like you, I was born with BAV. And like you, mine was discovered during follow up for a murmur. I was age 52 at the time and 20 months later I had surgery to replace my BAV and also my aortic root and part of my ascending aorta.
It is normal to feel shock and anxiety upon learning this news. I remember the week in 2019 when I learned of my bad news and how it turned my world upside down- at least for a while. I was taking my family to London, a trip we had been planning and looking forward to for about a year. On the day of departure, I got the first bad news- my advanced lipid panel discovered a genetic dyslipidemia, which most medical sites seemed to think was untreatable and which would increase my risk of heart attacks by about 300% as an independent risk factor. Over the next few days, while in London, more bad news kept coming. The next news was that my heart was enlarged; then the aortic stenosis diagnosis. The last place I wanted to be while I digested all this was overseas. It was a lot to swallow and I really would have much preferred to be home reading everything I could about my conditions for 12 hours a day, until I got my arms around things.
So, the trip really sucked for me, and I probably averaged about 3 hours of sleep per night. But, as I learned more and came to terms with the hand that I was dealt, I started to gradually shift from anxiety towards gratefulness. As others above have mentioned in this thread, our condition has a solution- one with a very high success rate. And, as long as we get it treated on time, we can go on to live very normal active lives, with normal lifespans. Facing the reality of open heart surgery is a tough pill to swallow, but these procedures have become routine in high volume hospitals and the outcomes are excellent.
You've indicated that your cardiologist is not a good communicator and in your post on Wednesday, you indicated that he said:
“if your aorta gets to 4cm we’ll be looking at surgery. Have a good day”
From what I can tell, the guidelines call for surgery once the aorta reaches 5.5cm, so one obvious question would be why he is using the 4.0cm threshold. It sounds like you have a surgical consultation coming up, so perhaps you can bring this up with the surgeon. They will operate at a lower diameter if they need to replace your aortic valve anyway, but you did not mention this as the reason for the surgical referral. You have mentioned symptoms, possibly from your regurgitation, so perhaps he has baked that into his timing for the referral.
I would make a list of questions for the surgeon. I think this is also a situation in which a second opinion can often be valuable. Some people spend over a decade with their aorta above 4.0cm before needing surgery, so I would really encourage questions about why 4.0cm is being used in your case. Perhaps there is a good explaination, which your cardiologist failed to give you.
Whether your surgery date is soon, or at some point in the future, the good news is that your situation is being closely monitored. For those of us who are monitored and get their surgery on time, we can look forward to a bright future. Also, you're very young and young people tend to recover very well from valve surgery.
Below is a link to a thread which I started once I learned that my stenosis had become severe. I tried to give regular updates leading up to surgery, in the days spent in the hospital following surgery and during my recovery. I'm now about 3 years out of surgery and I live a very active, normal life. OHS is not a walk in the park, but you will get through this and should have every expectation to fully recover and go on to live a normal life. we can't control the hand that we were dealt, but we can control how we respond to it and the hand is really not as bad as it seems.
https://www.valvereplacement.org/th...to-severe-and-need-to-make-a-decision.887879/
