@mrsbubbles My fellow mentor in HCM, Debra @karukgirl welcomed you to the big-hearted blog and I do too. She suggested contacting 4HCM.org and I strongly further suggest that you schedule an intake interview. Their knowledge and resources will help you along your journey. This is what they do! I was fortunate that after my family doctor heard a murmur that did not go away, I was referred to a cardiologist who trained at a place that is now a COE, and I was diagnosed quickly after an echo and stress tests. Insurance is ONE BIG HEADACHE! My former employer has a not-for-profit Medicare Advantage Plan for its retirees. Mayo accepts Advantage Plans from employers. I was quite surprised that I was charged in-network copay for the hospital bill at Mayo - it was because no in-network places offer that surgery. I am sorry that you are dealing with so many serious issues ((HUGS)); always remember that this blog is frequented by people who understand and have suggestions. Learn all you can about HCM so that you can team with your doctors in planning your next steps. Here is a link for you to read that may generate questions to ask: https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198 Do let us know if you scheduled an intake interview with the HCM organization and how it went!