@annieobee "I am fortunate with contacts" ((HUG)) I am very relieved that your hubby is in a supporting role, he is a professional in the heart field; that is to your huge advantage. Both you and your husband may know more about your medical situation because of your contacts. It would not surprise me if the medical people caring for you are consulting with colleagues, perhaps around the world, about your needs. You may choose to ask questions and become a participant in determining your own care. What kind of care are other patients with AHCM receiving? What is the next step in your care at this time? No, indeed, you are not alone!