Dianna @holly1275, I am so sad reading this post.
Like you...I don't know what to say either, except echo you in repeating your encouragement to other to go to a Center of Excellence.
We try and emphasize that sentiment here on Connect, but sadly, for some it is not possible.
I wish I could impart some words of wisdom, but right now you need support that just listens.

May I introduce you to our esteemed Mentor @danab, here is his spotlight:
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/connect-feels-like-home-with-a-heart-meet-danadb/
Dana had heart issues that lead him down the road to a heart transplant at the Mayo Phoenix campus. He is inspiring and has a lot of wisdom he shares.
The Mayo Clinic is a COE for Hypertrophic Cardiomyopathy and takes on the most complicated of complicated cases.
You mention that being seen at a COE (Center of Excellence) is important, may I ask have you been seen at a COE now?
I hope you can find some hope...life is hard and feels empty without hope. When will you hear back from your doctor?