Living with cardiomyopathy

Thought I’d drop this here to shake things up—it’s a movie that actually makes sense of all this illness stuff (in English):

http://www.youtube.com/watch?v=0_PwYKvYt4g

Cheers! 😉

Well, here we go again—another segment just dropped on American TV.

http://www.4hcm.org/newsroom/videos/213600.html

Hi everyone,

I’m starting a fresh thread because the old one has become such a mess—it’s hard to follow everything from heart surgeries to other topics. I really hope this community can offer some support to those dealing with a dilated cardiomyopathy diagnosis.

My dad has been struggling for a long time, but things have taken a turn for the worse lately. He's barely getting two hours of sleep a night because his heart keeps skipping beats and fluttering... his legs have turned a dark shade of blue, and he’s developed this soft lump on his upper back near the neck. Every single doctor we've seen says a heart transplant is the only way forward.

Does anyone here know if there's any way to avoid this? Any options at all?

He is absolutely terrified of hospitals, let alone the idea of a transplant. I've already sent his records over to several specialists in Germany, and they all come to the exact same conclusion—transplant.

Please help! Thanks in advance.

Hey. I wanted to jump in here because I’ve been through this exact same thing. A transplant was my only option; my heart function was down to 20-25% about a year and a half ago. After four months on standard meds, I only managed to get up to 26-28%. Then I stumbled upon Mr. Radovan PETROVIC, who gave me some heart supplements. I've been taking them regularly since. Just had an ultrasound five days ago—my function is now at 50-53%, and all my other levels have returned to normal. It isn't expensive... $43 Give it a shot for three weeks. Maybe it'll help some of you...
PS. I'm actually under the care of Dr. Planinac, and he told me he couldn't even tell I had ever been sick before...

Hi everyone,
I honestly don't know how I missed this forum until now, I feel like it should have popped up sooner.
Basically, my husband—he's 40, an athlete, very healthy lifestyle type of guy—ended up at our local hospital at the end of April. He was having trouble breathing and chest pains, and they were actually prepping him for gallbladder surgery.
It was pure chaos. After two days of arguing with the hospital staff, they did an EKG and suddenly everything went into panic mode. They rushed him to the ICU, hooked him up to monitors, and then the screen just went flat. They had to use defibrillators to bring him back. From there, he was rushed over to Mayo Clinic where we spent 20 days. The diagnosis was dilated cardiomyopathy, a blood clot in his leg, permanent atrial fibrillation, and a heart fraction of only 10-15%, along with a lot of other medical jargon I couldn't wrap my head around. The doctors at the hospital were... well, I don't even have the words to describe how wonderful those people were. At our first follow-up, his heart fraction jumped to 33%, which really surprised our doctor, Malić. She’s such a kind soul and genuinely celebrates every bit of progress we make.
In early July, we headed to Johns Hopkins Hospital to see Dr. Erst and Dr. Bulum. After running a full battery of tests again, they decided to try cardioversion to stabilize his heart rhythm. It worked perfectly, and his rhythm returned to normal.
A few days ago, we saw Dr. Bulum for a check-up. He’s very happy with how things are looking—his heart fraction is up to 61% now! He’s already taken him off Furosemide, Lanitop, and Concor. We have another follow-up on June 1st, and we’re hoping he can be taken off Martefarin and Aldactone too.
As for what caused all this, three different CT scans pointed toward a virus—basically an untreated viral infection combined with physical exhaustion and stress.
If I can offer any advice to the people here: listen to your doctors. If they say a transplant is necessary, don't run from it. Of course, always get a second opinion, but I know that the specialists at Johns Hopkins are world-class and truly know their stuff.
I hope I wasn't being too much or rambling too long.
Best,

goldenbison18 said:Hey. I wanted to jump in here because I’ve been through this exact same thing. A transplant was my only option; my heart function was down to 20-25% about a year and a half ago. After four months on standard meds, I only managed to get up to 26-28%. Then I stumbled upon Mr. Radovan PETROVIC, who gave me some heart supplements. I've been taking them regularly since. Just had an ultrasound five days ago—my function is now at 50-53%, and all my other levels have returned to normal. It isn't expensive... $43 Give it a shot for three weeks. Maybe it'll help some of you...
PS. I'm actually under the care of Dr. Planinac, and he told me he couldn't even tell I had ever been sick before...

Can you send me Mr. Radovan PETROVIC's phone number?🙂

Look, my bad. I wasn't trying to tell anyone to ditch their meds for alternative medicine. All I meant was that when you combine what they're already taking (Lanitop, Carverol, Aldakton, Fursemid, Kardiopirin) with whatever comes from PETROVIC, the pills just seem to hit harder. It worked for me. If anyone thinks I’m making this up, I can bring in all my medical records to prove it...

Nicholas Myers said:Dear members, I have a request regarding discussions on alternative medicine for cardiomyopathy—specifically anything not recognized by mainstream medical institutions (including those "miracle cures" that supposedly defy everything modern doctors know). Please move those conversations over to the Alternative Medicine thread.

We’ve kept the post from goldenbison18 here since it references specific lab results and physician evaluations, but I am asking everyone to refrain from deep dives into unverified remedies or the individuals selling them within this particular thread.

Thanks for understanding.

Of course, anyone dealing with cardiomyopathy personally or caring for someone who is, knows you can't get right treatment without actual medical help. Things like juices or honey might help quality of life, sure, but only if the doctor clears it first after checking everything out.
Best,

Wishing everyone nothing but massive amounts of health this year!!!!!!!!!!

Hi there
I hope everyone is doing okay. It would be great if people could check in here more often—we all need a little support from one another sometimes.
On another note, does anyone know if it’s standard procedure for an occupational health doctor to cut a sick leave short, even if the specialists recommended staying out longer? Also, on average, how long do people usually stay out for this kind of treatment?
Best,

goldenbison18 said:Hey. I wanted to jump in here because I’ve been through this exact same thing. A transplant was my only option; my heart function was down to 20-25% about a year and a half ago. After four months on standard meds, I only managed to get up to 26-28%. Then I stumbled upon Mr. Radovan PETROVIC, who gave me some heart supplements. I've been taking them regularly since. Just had an ultrasound five days ago—my function is now at 50-53%, and all my other levels have returned to normal. It isn't expensive... $43 Give it a shot for three weeks. Maybe it'll help some of you...
PS. I'm actually under the care of Dr. Planinac, and he told me he couldn't even tell I had ever been sick before...

Excuse me, sir, but I was wondering if you could please help me find a way to get in touch with Mr. PETROVIC? My husband has just been given the exact same diagnosis, and we are quite desperate. Thank you so much in advance for any help you can provide.

Emily Ramos51 said:Excuse me, sir, but I was wondering if you could please help me find a way to get in touch with Mr. PETROVIC? My husband has just been given the exact same diagnosis, and we are quite desperate. Thank you so much in advance for any help you can provide.

Just Google "Radovan PETROVIC." Everything you need should pop up. You can either schedule an appointment online or just show up at his office with my husband's medical records and talk to him directly...

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.

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.

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,

Thanks for the quick reply—I'll get back to you once I have some actual specifics. I know he's already on Concor, a beta-blocker, but he’s been pretty reckless with his meds up to this point—he really needs to start taking this seriously now. Best of luck...:-)

Emily Diaz8 said: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,

I would be so incredibly grateful for any extra information you could provide. My husband is in a very bad state right now, and I'm feeling quite lost about what steps to take or how to help him... and we are running out of time. Could you please help me with some contacts? This is urgent, truly.

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?

So, I just got diagnosed with obstructive hypertrophic cardiomyopathy and aortic stenosis—not exactly the news you want to hear. Now I’m stuck weighing my options because the doctors aren't even on the same page. Some are pushing for surgery and an ICD implant, while others are suggesting alcohol ablation. I have to make a call on this pretty soon. I tried looking for some clarity over at www.mayoclinic.org, but it feels like that community isn't really active anymore. If anyone has been through this or has any insight at all, I’d seriously appreciate it. It would mean a lot.