← Return to HCM-ers: Introduce yourself or just say hi

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@baystater101

Not exactly the same experience, frankkylerobinson, but some similarities. I'm 72, and was told I had a heart murmur when in my 20s or so. Active life bicycling, hiking, skiing, swimming, etc. Diagnosed with hcm about 5 years ago only because thickening of septum (heart muscle between left and right ventricle chambers) was detected by echocardiogram, then MRI, but I stayed active and felt no symptoms till last summer when shortness of breath hit. My cardiologist said that from my high gradients and other measurements he would have expected symptoms years earlier.

So now I've started mavacamten (Camzyos) (moderate results so far) and am considering septal myectomy surgery.

My point: It sounds like for you, if competent doctors are "just" collecting data at this stage that may be appropriate for now. Each case is different, and judgment calls need to be made about when, and how, to intervene.

I have confidence in my doctors, but since the summer I have found it helpful to ask a lot of questions and self-educate on line. Also, I got a second opinion from a recognized expert.

This site is great for hearing about others' experiences, and I recommend the HCM Association for a wealth of information. Here's their url: https://4hcm.org

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Replies to "Not exactly the same experience, frankkylerobinson, but some similarities. I'm 72, and was told I had..."

May I ask what your gradients are?

I have a history much like you from age 18 with heart murmur. No symptoms for 6 decades until uncontrollable BP and SOB. Had opinion in spring 2024 after cath was for replacement of calcified aortic valve with TAVR procedure. Second opinion after TEE advised open heart surgery for enlarging aortic root, aortic valve replacement, severe sub aortic stenosis, with basal septal ridge, septal myotomy/myectomy. Third opinion agreed with open heart surgery. Knowledge is power and trust your instinct. Amazing what value these postings have to others.