Newly diagnosed obstructive HCM: seeking advice and reassurance

Glad to hear you’re feeling better. I’ve been on mavacamten for three years- my obstruction has disappeared. No need for a septal ablation. I’m 79 and pretty active. I have some difficulty going upstairs or hills. Get somewhat out of breath. But I see a trainer twice a week, take a deep water running class, and walk my dog a few times a day.
Hope you continue feeling better

All great concerns and questions. I was diagnosed about 5 years ago with obstructive HCM—I am currently 75 years old—my initial diagnosis was a mild case and I had no symptoms whatsoever -the doc noticed a slight heart murmur during my yearly physical at the Mayo Clinic. This led to further testing which resulted in the diagnosis.
Everything stayed stable and mild for 2 years - then I started noticing some fatigue and some exertional issues when going up stairs or walking up a hill.
Testing showed a worsening of the disease and mild changes to moderate. I was also put on verapamil. The past year the symptoms have worsened and after my recent round of testing at the Mayo, my cardiologist increased the verapamil dosage and I go back in 3 months —it is starting to look like I may be at the point of Septal Myectomy—which, I have been told is the “Gold Standard” treatment for this disease.
Maybe it’s because of my age, but I do not worry about sudden death. I take comfort that God knew me before I was even knit in my mother’s womb. He knew the moment I would enter the world and He knows the moment I will leave the world. My job is to live the best life I can with the time I am given.
I will be praying 🙏 for you…

@cpaddyo We "met" in a different discussion earlier and I am glad you are at Mayo and yes, it is the Gold Standard treatment. I was 75 when I had a septal myectomy, so very glad I did, the surgery is 99+% successful at Mayo. I traveled from Upstate NY to there on referral from my doctor. Like you, my HCM worsened and surgery was necessary.

There are good discussions about septal myectomies, here are 2: https://connect.mayoclinic.org/discussion/what-i-learned-from-my-open-heart-surgery-part-1/ and https://connect.mayoclinic.org/discussion/my-septal-myectomy-decision-and-10-things-ive-learned-since/

Verapamil in high doses created an uncomfortable problem for me that Metamucil, exercise, much water and fiber did not help, hope that is not your experience! Keep us posted on this journey. When is you next appointment?

@mshcm Welcome to Connect where we share experiences with others with similar health issues. It is not a place to get professional medical care. I have no experience with Camzyos but did take verapamil before a septal myectomy. My dose of verapamil was low (sorry, I do not remember) but was increased and taken twice a day between a syncope incident that resulted in a septal myectomy 5 months later. I am glad that combination seems to be working well for you, and I hope others can comment on your questions. I can comment on the anxiety and fear. Until that syncope, I had none. I was in denial. Ignorance is bliss! Those 5 months made up for lost time. Anxiety and fear: As time goes on, we often learn to trust our doctors, we educate ourselves about HCM, our medications, ask questions, some receive mental health professional care ... we learn to own our anxiety and fear. At age 51, you've had many life experiences including stepping into the unknown, making changes, shifting directions. Can you share how you coped with the fear and anxiety as you faced those new challenges?

Hi,
I was also diagnosed when I was 50. No family history for me either and both my parents lived well into their 90's. Originally I was diagnosed with just a murmur, then later a atrial septal defect and finally HOCM, so my symptoms were very gradual leading to shortness of breath with exertion. I got a second opinion at Mayo and at that point I was pretty stable on verapamil. but if my symptoms worsened, I would be a candidate for a septal myectomy.
Fast forward 20 plus years, I got an implanted ICD because I had experienced some passing out episodes. It was explained to me that it is like having air bags in your car...you don't even think about it unless you really need them. Thankfully, it hasn't been needed. The next couple years my symptoms gradually progressed with increased dizziness, shortness of breath and was just tired all the time. Also frustrated.
In 2024, I tried mavacamten when it was fairly new. Unfortunately, even on the lowest dose, my left ventricular output dropped below the protocol so I had to discontinue it after 4 months. Last year, I went back to Mayo Rochester and had the septal myectomy. I live in a rural area of CO so I'm grateful for the ability to access their expertise and care, as well as pre and post op guidance.
In hindsight I wish I had gone for the myectomy sooner, because I am so much more functional and energetic. That is just my experience and as you noted, circumstances vary with everyone. I certainly hope the mavacamten works well for you for a long time, but if your symptoms change and your cardiologist recommends it, don't be afraid to go for the myectomy.

@walkinggirl pour le moment je ai encore rien fais mais cette semaine j ai pris contact avec un psychologue pour faire des séances de EMDR afin de minimiser l anxiété et le stress, aussi le choc traumatique du à l annonce de la maladie etc … j espère que cela fonctionnera ☺️

@joyrcc thank you so much for sharing your experience .. it is good to know because at first the surgery looks so scary 🥹

@mshcm Here is a great big hug (HUG) for advocating for yourself and starting another phase of self care. Good! Tres bien! You are setting a good example for us all. Apparently, anxiety is quite common, you are not alone.
Please keep us all informed as you move on in your life.

Hi MS@mshcm- I too was recently diagnosed with HOCM, which is sadly genetic. My LVOT gradient was so high initially, my cardiologist thought it was a false reading until he looked the actual echo video replay and said, nope this is definitely a problem! Mine was 244 mmHG active and 99mmHG at rest.
I completely understand the emotions surrounding all of this! I was put on 50 mg of Metoprolol, then started on the Camzyos in July 2026. At first, so much was coming at me I didn't have time to digest it all....and now that I have taken time to let it sink in, I totally get the anxiety and fear. I also have pretty serious GERD and had to stop my omeprazole because of the Camzyos, and when I get gas pain in my chest, I worry it's a heart attack, until the antacid kicks in and all is fine, but every little twinge I am wondering - what was that?
Bottom line (for me), however, is that I am a woman of faith and I have placed that faith in God. It's out of my control. I certainly pray it does not happen, nor do I wish it on anyone with this condition - it's terrifying. I have decided, however, to live my life as I can, allow for rest when needed (listen more to my body). I just turned 70 and have always been a go getter, non-stop person all my adult life so while this is hard, I choose not to let it get the best of me. My echos have shown tremendous improvement on this drug, and while it's not perfect yet, nor am I completely free of some slight symptoms, it's a far cry better. Next echo up in a week and we'll see what the outcome is then. I just thought it happened to me because of my age, but I see it crosses all age groups so that helped me not feel so old. I also have had other testing done to identify my cardiac risk, and those are generally in good standing (Cardiac CT scan, etc) so my heart attack risk is low, although not zero of course. Best wishes to you (and all with this condition) as you go through this challenging health journey.

Thank you for sharing your journey. I hope you will be fine and your health will continue to improve … we have to learn how to live with this disease because the stress and anxiety is our worst enemy…everything is already written … they are also so many people they are living well and the disease never became worse so I chooses to see the side of the full glass ☺️ and I pray also 🤲🏽❤️ take care of you ❤️