You have such a great outlook @jaymaysea. I know this must be difficult for you not getting the response you hoped for. Naturally I am biased towards the Mayo Clinic, but Cleveland Clinic is top notch as well, and being seen by an Center of Excellence is like no other experience. If you can, I would encourage you to do just that! I have shared my story about being misdiagnosed for several years, and finally going to Cedar Sinai and Mayo for HCOM diagnosis. The Mayo did two things that made me choose them...they ordered a plain old chest xray, and they did a simple lab BNP. Cedars didn't do that, only a fancy echo. It showed my heart was failing. That scared me! So open heart surgery it was. Now I want to share with you another story to maybe help you decide about a COE visit. I have a friend in Washington. The State, not D.C. 🙂 She was diagnosed by her cardiologist with RIHD, Radiation Induced Heart Disease. She had breast cancer and had radiation to her left chest. Years ago. She was told she need surgery, and her valve was bad too. I encouraged her to get on Connect and learn as much as she could. She didn't, but that's ok. She told her doctor about Mayo and being a Center of Excellence and he had no idea what she even meant, and said Washington State was a top leader in whatever it was she had. So two months ago she underwent a TAVR. She was feeling better, but not really. He started doing more tests. He was confused and had no idea what she had, because it was not RIHD. She did not need the TAVR. More research on his part and she now is diagnosed with amyloidosis of the heart. I have given her the information to sign up with Connect and I think she is now. And she is also planning to come to Mayo for a second opinion. She had surgery for something she didn't need!! Her doctor was stumped but his ego kept from sending her to a COE. Just a little side note for you to think about. Your health is your greatest gift, and it's so important to do all you can. I would go with you to Mayo if I could!!