@mary612 Mary, I really feel for you and your husband and all of these difficult decisions!! I’m glad there are some positive signs for you to hold onto, amidst all the uncertainty and anxiety.
That doctor would be a tough one for me: There are great advantages to an expert, and bedside manner is not important if they get the job done… But for me, good communication, hearing and respecting my ideas and questions, and keeping me in the loop as part of the treatment team is essential for my healing as a patient.
So if you factor out the bedside manner, are you feeling communicated with and listened to?
And if you are nervous about being in a strange city without support, have you considered temporarily moving someplace with a good amyloidosis center that is close to one of your kids or good family friends?
Sending you and your husband support and healing energy! Sherry