Posts by Emily Diaz8

What kind of cardiomyopathy are we talking about here? I was diagnosed at Johns Hopkins Hospital after getting a completely wrong diagnosis back at a clinic in Chicago. If it’s obstructive, surgery is an option, though I'm not entirely sure how the process works here in the States. Apparently, they perform those surgeries at the Cleveland Clinic; if you check their site under surgical outcomes for congenital heart defects, they list two such procedures performed..

I assume you're being monitored by a cardiologist, so I trust they gave you some actual guidance?

Dennis Green3 said:Hi, I know it’s been months, but—well—I’m hoping Emily Diaz8 might still have some insight here. I’d really appreciate it. I'm worried about a friend who's dealt with HOCM since birth, and things seem to have taken a turn for the worse over the last few years. He’s seen plenty of doctors and gone through endless testing, yet they keep pushing him toward surgery. I’m not entirely sure of the specifics, but it sounds like it would be open-heart surgery. He’s only 25—young, deeply depressed, and living under massive amounts of stress—which certainly doesn't help the situation... thanks for any info you can share.

Hey.

If your friend has diagnosed obstructive cardiomyopathy, he’s actually quite lucky. If he goes through with the surgery, the symptoms usually vanish instantly, and he shouldn't face heart issues again—at least regarding the obstruction. Otherwise, the condition can progress, and the heart could weaken significantly.

There is one more thing to consider: in my experience, alcohol ablation is often recommended because hardly anyone performs a myectomy (removing the thickened part of the heart muscle) anymore. However, ablation isn't a permanent fix. Because of my age at the time (I was 45, whereas your friend is only 25), an outside specialist advised me toward a myectomy to resolve everything definitively. It’s been four years since my surgery, and the improvement in how I feel is hard to believe.

The reality is that there are very few places in the US where this specific surgery is performed with top-tier results—meaning you don't end up needing a defibrillator later, and the surgeon doesn't cut too much or too little muscle.

My advice: if he decides on surgery, do not leave it in the hands of a surgeon who rarely, if ever, performs this procedure.

Your best bet is to visit http://www.4hcm.org/hcma-the-organization/index.1.html. Everything you need to know about this disease is documented there; you’ll find answers to just about any question or dilemma.

Let me know if you need anything else.

Regards,

Hey everyone...

If anyone wants to hear about my experience dealing with hypertrophic cardiomyopathy, I'm here. The surgery was a total success, but getting to that point was an absolute gauntlet.