Newly diagnosed obstructive HCM: seeking advice and reassurance

@mshcm both of my twins are negative so far, but when the gene testing expands, I hope they will pursue the gene testing as well.

@whidbey je suis vraiment contente pour vous 🤲🏽☺️

@joanallione I am in my second month of Camzyos.
I’m 84 so I needed an hour afternoon nap anyway, but this drug is making me very tired . Some dsts I don’t want to get dressed at all so I’m encouraged to know that that passes and that this will be the answer for me because I am still quite active.

I was diagnosed with HOCM at 64 yrs old. I thought I was just getting old and out of shape when I started huffing and puffing on walks and trying to walk up stairs. My primary care doctor noticed a heart murmur and referred me to a cardiologist. 2 years later I am on a beta blocker but have not been able to get approved for Camzyos. My LVOT gradient has risen to 178. My current cardiologist is retiring and I will be looking for a new one. I totally understand your feelings and I too have periods where I feel utterly helpless and kind of depressed but I think about my father who had it and he lived a pretty normal life until age 91 when he died of bladder cancer.

I was diagnosed with HCM at 54 yrs old and now 63. Was told as child I had a heart murmur but that never stopped me from having a very active and production life. In my late 40's I began to have issues with my blood pressure spiking and was placed on various medications which never helped much. Later, while deployed to the DMV (DC, Maryland, Virginia) area I went into a small University health clinic in Maryland for blood pressure and shortness of breath and they found my HCM. Shortly after, I was working in Texas and had to be admitted to a hospital due to shortness of breath and high bp. They verified my HCM diagnosis and I

I have been on Camzyos about 3 years now and it started out GREAT, unfortunately in 2025 my heart condition became worse. My murmur returned and my heart stopped after I became overwhelmed by heat exhaustion. Thankfully, I survived.

I am still taking Camzyos but had to undergo surgery for an ICD in November 2025, which I was told when first diagnosed surgery could be in my future. After some complications, I know feel better than ever. Still taking it easy because of my Type 2 diabetes diagnosis my healing process is slower than usual.

I became a little depressed during my recovery process and the change in lifestyle, but prayer helped me tremendously. 🙂

@mshcm so far my twins do not have HCOM. They will continue being tested every five years.

@thoma175 I'm 80 now. I was diagnosed accidentally at 65. I had a septal myectomy at Mayo 15 years ago. There's been serious improvements since then. Now they fix the mitral valve while they're in there. I wish they had that option back then. But, luckily, they can fix the mitral valve noninvasively now. I'm doing fine. I have a good quality of life. I, too, had some less than satisfactory experiences with cardiologists. So, in my opinion, that's a very critical problem that has to be fixed. I've had unexpected retirements of great cardios, was on the hunt again, and am in good shape again today. So, for those fearing a shorter lifespan because of HOCM or HCM, I'm living proof that being your own advocate and maintaining quality medical care can result in longevity and good quality of life. Stay informed. I used to feel afraid about its impact on my life. Not anymore.

@walkinggirl Thank you for your valuable insight regarding oHCM.
I was diagnosed with obstructive HCM in May after 2 recent cardiac episodes and many years of sporadic symptoms . After the first episode (in February) the hospital cardiologists told me I had Takotsubo syndrome because they observed a severe ballooning of the left ventricle during the echo. I explained that I did not have a recent severe physical or emotional stress situation, the cause of Takotsubo syndrome, but they maintained their diagnosis and sent me home after 3 days. The 2nd time was in early May with much more severe symptoms. 3 days in cardiac ICU + 2 days in observation. The cardiologist, realizing that it was not Takotsubo, suggested the genetic test and cardiac MRI. The test came back positive for HCM.
I am now under the care of the director of the HCM center in NYC. The stress test performed at the center did not reveal any obstruction although I performed at 130 % of the average. I then had a cardiac catheterization with a chemical IV which demonstrated severe obstruction and ballooning of the left ventricle, apparently a very rare occurrence in HCM patients, hence the cardiologists’ confusion.
First I was prescribed Metoprolol which strongly exacerbated my hair loss. Then the HCM specialist switched to Bisoprolol (a very low dose because I do not have constant obstruction ) but I still had palpitations and shortness of breath. I was then prescribed Disopyramide in addition to Bisoprolol, and also Pyridostigmine to counteract the nefarious side effects of Disopyramide. Well, that was not well tolerated at all by my digestive system so I was taken off those 2 medications. The HCM specialist is now trying to get me approved for a new medication called Aficamten, FDA approved only in January 2026. But he is leaning towards septal myectomy and mitrial valve repair as being the best solution. I admit that I am terrified at the idea of the open heart surgery. Is the recovery excruciatingly painful and lengthy?
I apologize for the long post. I thought providing background would be helpful.

@dp80 votre message est extrêmement rassurant, mon cardiologiste m’a dit plusieurs fois que la HCMO n avait pas d incidence sur l espérance de vie … mais je ne voulais pas l entendre car pour moi c était associé justement au contraire 😨… merci d avoir partagé votre expérience je vous souhaite vraiment de continuer à vous rétablir et à vous sentir de mieux en mieux !

I inherited OHCM and I have it with similar results you have very encouraging for the last 3 years. Therefore, relax for this is great with no side effects and I have a normal life now at 66 years old and I am still slowly jogging and when I can I sprint fast enough as a 35 year old person. So take it easy, enjoy life and do not worry at all. God keeps blessing you.