Living with cardiomyopathy

So, I was recently diagnosed with HOCM—hypertrophic cardiomyopathy—which is basically a genetic issue with the heart muscle. Since this just hit my radar, I'm wondering if anyone else here is dealing with the exact same thing? How are you all actually managing it?

When were you first diagnosed? What kind of symptoms were you dealing with at the start? How did the whole diagnostic process unfold?

Four years ago, everything changed. I used to get winded just from doing anything remotely strenuous—it felt like my heart was struggling to keep up—even though back then, I was an incredibly active athlete. Then came the military recruitment physical, and let’s just say the EKG results sent the doctors into a total frenzy. They immediately flagged me for a cardiologist, and now here I am... stuck in this constant loop of fear and uncertainty. I honestly don't know what to think, what to do, or how to even process this. Every single time my chest tightens—and it happens constantly, multiple times a day—I find myself instinctively reaching for my pulse, checking my neck, just desperate to make sure my heart is actually still beating. It’s absolutely traumatic. I try to push through it and just live my life, but man, it is exhausting. To top it all off, I just graduated college—a moment that should be a massive celebration—but instead, I’m just trying to survive this mental torture. So, yeah... that's where I'm at. Cheers.

I have some firsthand experience dealing with this hereditary condition. My son was actually diagnosed with it when he was just two months and ten days old. Since that diagnosis, he’s been on beta-blockers to help ensure there's sufficient blood flow to his brain. Just yesterday, I accompanied him to Cleveland for his routine checkup, where Dr. Ahel suggested we should start considering other alternatives—surgery being one of them. He’s eight years old now, and honestly, facing a decision like that is incredibly heavy; it's not something you can just brush off like a minor injury.

I’d like to open the floor to anyone here who might have some insight regarding this condition—please, feel free to weigh in. From what I understand, a procedure of this nature hasn't actually been performed here in the States; instead, people typically head over to Italy or other countries to find those specific specialists.

As far as I can tell, there just isn't a surgical fix for cardiomyopathy... unless you're looking at a heart transplant, which is obviously the last resort.
I’m also dealing with some issues with my aortic valves, so I'll have to go under the knife for that in a few years—hopefully, I can push that off as long as possible...

Please, let me know if you know of any alternative to a transplant—like some other kind of surgery or procedure...

How can you say it doesn't exist? It absolutely does. Think of it this way: you have increased muscle mass on your left side, which essentially means the blood flow through that area is being restricted. Which doctor were you seeing for this? As for me, I'm currently facing a similar weight on my shoulders, having to weigh all the options regarding a surgical procedure for my son.

I’m seeing with Professor Ernest in Washington, D.C. He’s one of the top cardiologists over at the Mayo Clinic... though he hasn't actually walked me through the specifics of any surgeries yet—I just know what I've gathered from digging through medical journals and various sites online.
According to him, I won't even need surgery for another 5 to 10 years.
Anyway, the guy is incredibly sharp. Most of the cardiologists I’ve seen across the US have pointed me directly to him.

Could you tell me what kind of surgery your son is looking at and where you guys are planning to go for it? Also, how are you handling the costs?

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So, here is how things currently stand: we are going to perform a catheterization once again. They thread it through a vein in the leg straight to the heart to get high-resolution imaging; it’s really the only way to get an accurate reading on just how much thickening there actually is. We discussed the possibility of surgery about four years ago, and I recall him mentioning that those specific procedures weren't being performed here in the States. So, if surgery becomes necessary, the plan would be to head over to Italy. Before making any final calls, I am definitely going to seek out a second opinion from an outside specialist to get a clear picture of the reality of the situation. As far as the condition itself goes, it exists, but THANK GOD there aren't any symptoms—aside from taking Inderal, a beta-blocker, which keeps his heart rate from spiking during running or other strenuous activities. Regarding the financial side of things: if you want to go abroad for the operation, a medical board has to convene to determine if such a procedure is standard practice in America. If they decide it isn't, they won't cover it; if they do agree to pay, they usually dictate exactly where you have to go. Now, maybe similar things have been done for adults in the US, but honestly, why risk an operation where 😳the surgery is deemed a success, yet the patient passes away? Four years ago, the cost in Italy was around 15,000 Euros for the procedure alone, not including the hospital recovery, which lasts about 30 days. And believe me, staying in a hospital isn't cheap by the day. That is all I have for now; if you happen to come across any new information, please let me know. Thanks!

Raymond Campbell49 said:How can you say it doesn't exist? It absolutely does. Think of it this way: you have increased muscle mass on your left side, which essentially means the blood flow through that area is being restricted. Which doctor were you seeing for this? As for me, I'm currently facing a similar weight on my shoulders, having to weigh all the options regarding a surgical procedure for my son.

Man, it's been way too long... how did everything turn out? How's your son doing? What was the verdict after the catheterization?

Drop me a line when you can. Best,

Honestly, besides a transplant, I’m drawing a blank on what else is out there for treating primary cardiomyopathy. It's a whole different ballgame if the heart muscle weakens because of a valve issue or a heart attack... but when it's just straight-up primary weakness... man, I don't know any other way to fix that without surgery.
Maybe we can get some more insight from Tomislav....

edit:
I remember a while back they started using Levosimendan over here—I think it’s registered under the name Simdex in the States. One pack runs you about a thousand bucks, it goes straight into the vein, and after about three or four weeks, it really turns things around for people living with cardiomyopathy.

If medication fails to manage the condition, surgery becomes an option. For those dealing with HOCM, the Morrow procedure—specifically septal myotomy—is performed, where roughly 2 to 6 grams of heart muscle are removed. While some patients may experience mitral regurgitation afterward, very few develop cases severe enough to require further surgical intervention. The mortality rate for this operation is minimal, and the vast majority of patients report feeling excellent even ten years later...

Honestly, man, luck isn't really on your side when it comes to those kinds of procedures, Sam Hall15. I haven't heard much about Morrow, but I did hear about some procedure called Batist or something similar where they tried a comparable approach.
But that’s ancient history at this point; honestly, I don't think they even do that here in the States anymore. Nowadays, since the total number of cardiac surgeries performed across the whole country is relatively low, it's almost a certainty that nobody is going to be performing that specific surgery here.
In the best-case scenario, you might get put on some medication, or if you meet the right criteria, maybe something involving a VAD device—those are becoming way more common now that everyone is talking about "mechanical hearts" and all that...

I think Scott Allen10 might be getting a little mixed up between the common cardiomyopathies—like ischemic or dilated—and hypertrophic ones. What we're actually looking at here is that thickening in the left ventricular outflow tract, and there are definitely surgeries designed to clear that obstruction by trimming away part of the muscle. If you're really careful with the excision, you can usually avoid causing mitral regurgitation, though I guess a tiny bit might happen due to ventricular remodeling, but honestly, a lot of these folks already deal with some regurgitation anyway because of things like prolapse or whatever.

Hey Casey Cook10! Thanks for the correction, man. I totally lost my train of thought when I was rambling about that hypertrophic stuff... but honestly, I still feel like those kinds of surgeries are basically just a way to manage symptoms rather than fixing the root cause. To me, the whole risk-vs-reward ratio seems pretty sketchy on that front. Since I haven't dealt with myectomies myself, and I haven't really heard of anyone doing them here in the States—maybe you have? (would love to hear if you have)—I don't really have any solid ground to stand on for my argument.

If we’re talking about HOCM with outflow tract obstruction that just won't budge with meds, surgery is on the table—but you also have to consider Percutaneous Alcohol Septal Ablation. Basically, they trigger a controlled infarct in a section of the IV septum to clear the blockage, provided the coronary angiogram shows a suitable septal branch to work with.
Just two quick pieces of advice from my side: 1. It definitely wouldn't hurt to get an ECG Holter done every now and then, and 2. Since most HOCM cases are inherited via autosomal dominant patterns, family members really ought to get an echocardiogram. As far as I know, genetic testing isn't really an option here in the States, and you have to be careful because it tends to show up later in women and can be pretty sneaky.

It’s been quite a while now, and I’m finally starting to wrap my head around how to actually live with this condition. I wanted to ask—is septal myectomy even an option for someone with non-obstructive HOCM? If that's off the table, what other surgeries are we even looking at?
Also, just how "dangerous" is non-obstructive HOCM when you compare it to other types of cardiomyopathy or, you know, an actually healthy heart? 🙂

Hey everyone!

I'm 28. Got diagnosed with HOCM when I was 23. Back in June 2005 (so 3 years ago), I had a Percutaneous procedure—you know, the alcohol ablation thing. Honestly? It didn't do much for me. Sure, that procedure can be a total fix for some people, but nobody can actually promise you anything... It usually takes about two and a half hours, but mine dragged on for five because the doc couldn't even find a vein. It's done live and it hurts like hell... I had to take four morphine shots while they were working on me... Dr. Margetić performed the procedure at Mayo Clinic, and if I recall, I think it was one of the first times they ever did it in America. Recovery takes about 6 to 7 days. After it was over, the docs told me I needed surgery ASAP, something they couldn't do here in the States because they lacked the specialized surgeons and the gear for it.
So, I started hunting for a doctor. The first guy I heard about was Dr. Tomislav Mihaljević over at the Cleveland Clinic in the USA—seriously, the best heart clinic on the planet, top-tier cardiac surgeons. He looked over my files via email and confirmed they could do the operation there. When I asked how to pick a place, he told me straight up: since this procedure is so rare and specific, you gotta go where the experts are. I mentioned I had an option to have Prof. Dr. Marko operate on me in Palm Springs at the Magdalena clinic (he actually trained under Mihaljević). He told me I could totally trust Prof. Marko with my life 🙂. Down in Cleveland, that surgery runs anywhere from $55k to $60k, and that includes a 7-day hospital stay.
Anyway, I got in touch with Prof. Marko, sent him my records, and he set me up an appointment in about 20 days. Pretty fast, considering I had to pull all those strings myself without any help...
Fast forward to November 2005: I had the surgical myectomy—open-heart surgery. It went well (I'm still breathing 🙂) though the doc said he could've taken out another half centimeter, but man, it’s tough to judge once your chest is already open. I was out of there seven days after the surgery (I see someone above mentioned 30 days, but nope)
. Bottom line: I feel way better now. Still get some issues here and there, but nothing compared to before. Still on meds, though.
Medicare covered the costs at Magdalena, except I had to pay for the surgeon's travel—can't remember the exact amount, but it was somewhere between $8,000 and $9,000.

That's the deal!
If anyone needs more info, hit me up at 555-0199, Marko

Hey, steelhound12—good to see you jumping into this thread. Don't worry, I'll definitely be picking your brain once I have some actual questions for you 😉 anyway, I’m just relieved you’re doing okay now and that the surgery went smoothly 👍

So, I was digging around online and actually stumbled upon a website for an association for people living with HOCM (who would’ve thought we even had an organization like that here in the States?). The site is totally open to everyone—families, friends, us patients, or anyone else who wants to wrap their head around this constant struggle of a disease...

They even have a forum where I’ve already signed up 😁. It’s a good spot for us to vent when things get heavy, plus there's a ton of solid info on treatments and stuff
.
If anyone wants to check it out, the link is www.cardiomyopathy.org

Hi 🙂
I'm 25, and I was diagnosed with HOCM three years ago. Since then, things have taken a turn for the worse, and now I'm looking at surgery. Back in August, I had a coronary angiogram with Dr. Margetić at the Mayo Clinic. He recommended alcohol ablation, but I turned him down—I told him I needed more time to weigh my options and wanted to get second opinions from specialists abroad who actually focus on cardiomyopathies. Luckily, I have someone close to me who has already been through everything I’m facing, but they should probably be weighing the choice between alcohol ablation (not here in the States, though) and septal myectomy.
Mainly, I'm curious about your experience with alcohol ablation, steelhound12. I'm glad to hear the surgery went well for you 👍
As goldencobra16 mentioned, there's this website www.cardiomyopathy.org run by a cardiomyopathy patient association. It has some great info and a forum specifically for people like us 😉 so we could move our conversation over there.