Anyone have input on living with symptoms from cardiomyopathy?

Hello, I have HOCM with symptoms and am not a candidate for an ablation or Cazmyos but am a good candidate for a septal myectomy. I was told I should fix my HOCM and get the surgery. Was anyone told to get the surgery but decided not to for some reason?

Consider Pilates if yoga
Inversions etc brings on symptoms. Move your body however much you can each day and sleep rather than caffeinate had been the best advice I got

You have truly been my angel today. You are so encouraging and supportive. I had a cardiologist in New Jersey, Standford university medical in California and now my current cardiologist at the University of Alabama. None of the cardiologists ordered the test to get to the bottom of my fast heart rate. I finally found a group of cardiologists who teach about this disease- made an appointment and he ordered the stress test. However due to other medical conditions, I became extremely tired and was referred for a heart cauterization. I am meeting with my primary care physician for recommendations on other opinions. I don’t want to go back to the doctor who blew off my fast heart rate. I had no real pain or other symptoms but feeling tired. Sorry for the long summary. I shared everything as it might help someone else. Thank you❤️

@marsims, that is the single best thing you can do...learn as much as you can about what you've been diagnosed with. We have to be educated so we can be our own best advocates when it comes to treatment, medication, exercise, diet, life in general. I admire your attitude. Faith is powerful. It is having confidence in what we hope for and assurance for what we do not see. (Hebrews 11:1)
It must be unsettling to say the least worrying about if/when you may have a heart attack! That would make anyone anxious! When do you see your doctor next? Maybe that would be a good opportunity to ask for a second opinion? The Mayo Clinic is a world leader in complicated cases. Are you near a Center of Excellence (COE) like the Mayo?

Thank you so much for this link. I will continue to research on this. Still new on the terminology. I will continue to educate myself on this difficult disease. Blessings

Thanks so much for responding. It means so much when others hear our concerns. I have not sought a second opinion but plan to do so. The cardiologist said my veins are too small for stents and no guarantee it wold work. My medical therapy includes taking 40 mg of Crestor daily. Currently, they have scheduled me for additional vascular test; legs and carotid arteries. I’m not sure how long I’ve had the blockage. They think it ma be congenital. Again thanks for your information. I’m thankful I have faith in God.

https://connect.mayoclinic.org/discussion/coronary-by-pass-second-opinion/
Hi @marsims, I found this link to something you may be interested in regarding second opinion and coronary blockages.
Take a look around and search in the Heart and Blood Health support group. There is a TON of information that may be helpful to you.

Hi @marsims, isn't this site wonderful? It truly does provide a platform for others to share whatever journey they are on.
I can't imagine knowing you have a 100% blocked artery and being told you would need open heart surgery if the other artery was 50%. Then be told you are too high risk? Have you done any reading on some of the topics regarding CAD? This particular post is regarding Hypertrophic Cardiomyopathy, which is a heart disease due to a congenital issue. Regardless, there is information out there about being treated with statins, maybe try a search in the search area? Have you sought a second opinion regarding treatment with meds vs surgery? Has anyone discussed a Stent to the blocked artery?

Hello,
What a great site to share our concerns. I have blockage at 100% and another insignificant blockage. My cardiologist said if that insignificant blockage was 50%, I would need open heart surgery immediately. Turns out it was not. Surgeons determined the risk for me was too great and medical therapy was administered - 40 mg of Crestor. I’m concerned that a heart attack is lurking there must be other techniques out there for blockage, any thoughts? I wish you all the very best. Thanks

I'm glad you found this site too! You can get lost reading all the information being shared on here...it's good to know we are not alone, that others just like us are out there.