HOCM w/SAM

I had a septal Myectomy at the Mayo. Dr. Ommen is my cardiologist and Dr. Rowse and Dr. Schaff did my surgery. I did not want ablation as that would not help the situation long term. It’s been about 5 years since surgery and my breathing greatly improved after the first day. And I am still good. There is no cure and mine is genetic. But I would rather do one procedure I knew was going to greatly improve my health than have several that only give short term relief.

I had a septal Myectomy at the Mayo. Dr. Ommen is my cardiologist and Dr. Rowse and Dr. Schaff did my surgery. I did not want ablation as that would not help the situation long term. It’s been about 5 years since surgery and my breathing greatly improved after the first day. And I am still good. There is no cure and mine is genetic. But I would rather do one procedure I knew was going to greatly improve my health than have several that only give short term relief.

Hi @mrsbubbles and welcome!

I was misdiagnosed for 4 years from age 37 to 41. Because I was “so young” they tried to explain my symptoms away with anxiety and my weight gain. Finally my GP heard a murmur and sent me to a local cardiologist, who treated me for a faulty valve for two years. Finally I was referred to a HCM specialist, who confirmed I have HCM with obstruction and he put me on Camzyos. That was almost a year ago on the 6th of May. Camzyos works for me and my obstruction is gone, so are my symptoms (before I could barely shower I had such bad SOB).
I don’t know your age and the severity of your HCM, but I do advise you to read up as much as you can on the condition, ask your new cardiologist all the questions you have (even write them down so you don’t forget) and make a decision that is best for you.
In the meantime just breathe and don’t get yourself too worked up, but if you do come here and write 😉
I wish you all the best!

I had a septal Myectomy at the Mayo. Dr. Ommen is my cardiologist and Dr. Rowse and Dr. Schaff did my surgery. I did not want ablation as that would not help the situation long term. It’s been about 5 years since surgery and my breathing greatly improved after the first day. And I am still good. There is no cure and mine is genetic. But I would rather do one procedure I knew was going to greatly improve my health than have several that only give short term relief.

@karukgirl hi karukgirl, I'm in a dilemma. I just changed my Medicare Advantage HMO plan in Jan before this diagnosis. I just completed breast cancer treatments last year (like I have nothing else to do) so I had to change my insurance because on 2026 many insurance companies changed their in-network cancer treatment coverage. The NCI designated Optum Center of Excellence in my area wasn't in network for 2026 so I changed the insurance company and the level PPO/HMO so I can still have treatment if I needed it in 2026, financially, not thinking about my heart issues because I never had a diagnosis especially a severe disease. My old cardiologist only said (in addition HTN, blood thinners, Familial Hypercholesterolemia and mitral regurgitation). One day ... Could be a few years or ten years you probably would need a mitral valve replacement.... Otherwise you're fine, everything is the same as last year and the year before.

So obviously I'm like a hawk watching my tests and hoping my cancer doesn't return BUT I have that assurance that I have a in-network center of excellence for cancer treatment within 30 min from my home and family.

Now my current insurance says any centers of excellence for surgery and/or treatment is out-of-network so I'm stuck!

Just trying to keep my positive attitude.

Thanx for sharing !

@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!

Hi Jim, wow 6 surgeries. I'm really waiting for the MRI to get the complete picture and I also hope that I can get that ablation procedure. I've had 2 heart attacks, AFib and a stroke and now with this (undiagnosed for years) HOCM my body is so tired I can't do anything really.

Jim, did the ablation procedure help you to get back to a livable life?

@mrsbubbles
Yes the alcohol septal ablation was a must. I still get chest pain and shortness of breath but my heart now has room for blood. I also have an ICD but now I have total heart block so my pacemaker works full time. I have a hole in my heart at the top and they tried to patch it but my leads are in the way so I'm on Eliquis. I also now have cardiac amyloidosis (stiff heart disease) so my heart does not pump adequate blood to my brain so I keep having ischemic strokes. I try to stay positive.
Best to you!
Jim