@mckenzie541, welcome to Mayo Connect. You have definitely come to the right place for more information from people who share your same condition. It is so scary at first, isn't it? I'm sorry, but certainly not surprised you fell through the cracks so to speak with your doctor and not getting the care or direction you needed. My story is so similar, but I'm waaaay older than you! This is a genetic condition that many people have and don't know it, until the obstructive symptoms come on. I remember sitting in the patient chair at St. Mary's hearing words coming out of Dr. Bagameri, the surgeons mouth, "you need surgery...open heart surgery." To say I was stunned is an understatement. I felt the blood drain from my brain and felt like I left the planet and had gone to a different universe. At that time, just over two years ago, Camzyos was not approved yet, only for clinical trials. There are now more people on this site taking this new drug with much success. No wonder you are encouraged by reading about it on here. I honestly believe, with all my hypertrophic heart, that no matter what you decide, open heart surgery or the new drug, you will come to a better decision after you educate yourself. Open heart surgery is scary. Not a lie. But it's also a permanent solution to the obstruction. No need for life long meds. It's something only you, your doctor and your family can decide. Poke around here...read as much as you can. Ask questions. People here are willing to share their story with you.
Having little ones has got to up your stress level to the 10th power! Since there is no cure, (yet!) there is only symptom management, surgery, or the new drug, Camzyos. For now anyway. Be sure that your cardiologist is up to speed on HOCM. It's not commonly seen in most practices, but it's something that the Mayo Clinic, and other Centers of Excellence (COE) excel at treating on a much larger scale. The top HCM doctor in the world is at the Mayo Clinic in Rochester. Dr. Steve Ommen. Again, I would encourage you to educate yourself as much as you can. Learn about all the different pathways you can take on this new journey. You are in the right place, at the right time and surrounded by others just like you. I would like to invite @colleenyoung to this conversation to share a couple of interesting posts and a really cool video about Hypertrophic Cardiomyopathy. When do you see your cardiologist again? Do you have a list of questions for him/her? What are you doing to handle your stress?