Hello Donna, @dleston, Welcome to Mayo Connect!
I feel the same way as you do about my septal myectomy at Mayo. I have never seen such a well-run, efficient, amazing organization as the Mayo/St. Mary's. I also experienced the exact same scenario before I was diagnosed and was misdiagnosed for four years with various garden variety heart conditions. You got two wonderful responses from members @nbs and @captainterry with really good information. I too had to return home to a town with no experts in treating HCM, and my original cardiologist who had misdiagnosed me was the best we had. It made me feel insecure as I wanted to only be seen at Mayo. Not realistic or practical for me in Northern California. My surgery was three years ago, and I was seen once by the local cardiologist and have since fallen through the cracks with his practice and have not been seen by anyone for two years. I am on no heart medications after working with Dr. Ommen through the Mayo patient portal. Just last year he told me to quit the beta/calcium channel blockers because I was having such a hard time on them. I feel great now...but I too am concerned about not having a cardiologist where I live that is experienced with this. I do hope you are able to locate one near you, but if not, I would encourage you to educate your doctor by learning as much as you can and share with him. Practicing medicine is a life long learning process, and I believe physicians are eager to learn about new things to help them practice better patient care. I noticed that after I was diagnosed (correctly) that I was the only patient in his practice with this and that seemed to spark some interest beyond just breezing through the brief appointments. Sadly, his practice is so busy it is easy to fall off the radar, which I did. Since I'm doing well, I haven't had a reason to go back yet. I am planning to make an appointment this year to get an echo done just to confirm all is well. I am three years out and you are only a few months, so I understand your concern right now. Since you had a septal myectomy, you no longer have the obstruction, but you still have HCM. Have you contacted the HCM dept. at Mayo through the patient portal? They may have some advise that can help you. I reached out just a few months ago and was told by the nurse that if I had any recurring symptoms I was welcome to schedule and appointment with them anytime. That is a sign of at Center of Excellence! That would be my advice to you...contact the HCM dept. thru the patient portal. If nothing else they can alleviate some fear you may have and perhaps offer some advice you can use. How are you feeling now? Are you recovering and getting back to your new life without HOCM?