I've been seeing quite a bit lately about ccm therapy for low ef and was wondering if anyone here has any experience with it. My ef is about 40, but I struggle with fatigue and thinking this might be worth looking into.
Hey everyone, I’m Dave from Louisiana. I was born in December of 1984. I received the Norwood procedure in early 1985. It was still very new, and was known as the “banding of the pulmonary artery”. Few years later, I had the Fontan procedure, followed by my first pacemaker (which I lovingly called Joey) the next year.
Throughout the 90’s, I had a series of scar tissue cleanups (open heart) and another pacemaker change in either 97 or 98, can’t remember which one. As an adult, I’ve had an additional 2 pacer swaps and am about to receive another within the next year.
I am 41 years and 8 months old. I’m eager to know if there are any other HLHS champs out there that are my age or older?
Hi all,
First, I know, trust my son's doctors. I'm doing that, I plan to continue doing that, but I'm a mom, and my son is my world, so even when doctors try to be reassuring... I'm never really at peace.
My 5 month old son was diagnosed with HCM (MYBPC3- sarcomeric) at 2 weeks old. He is currently asymptomatic and non-obstructive, with a z score of 6. We've had a few scans at the Childrens Hospital, and they have gone "well." Good ejection fraction, good functioning, we have not started any type of intervention or beta blockers. Overall I was feeling pretty good about things (as good as I can).
We had his proBNP tested through bloodwork... it was 5,000. Yes 5,000. What the fuck. His cardiac team keeps saying no worries, we expected it to be high, everythings fine, he's doing well. Well thats not what the internet says. The internet says this is pointing to heart failure and his heart deteriorating. I'm having a really hard time reconciling this insane BNP score with what I thought his current state was. I'm devastated and can't sleep at night. What the fuck... does anyone have experience with this? Can anyone say something reassuring? I'm just upset. He's the happiest little baby and with this score I feel like a bomb was dropped on my head.
hi. i had posted a couple of updates on my health in r/HypertrophicCM. its been a while since then and i had now just had a heart transplant. a lot has happened in 4 years; fainting spells, dizziness, lightheadness, etc. however, I am now in the recovery phase and was wondering what life would look like now. i am still so scared of everything but am so excited as well. I would appreciate some insight on this process!!
Hi all. I was recently hit with the horrific news of my mom having HOCM which prompted me to get tested (at 20 weeks pregnant) when I found out that I am positive for a MYH7 gene variant, the same type as hers. I’m phenotype negative currently according to my most recent echo. My variant is currently a VUS but will probably be classified as pathogenic soon.
The anxiety over this has been eating me alive. I feel like the more I read, the more severe this all seems. I am reading about severe childhood onset, heart transplants, SCD, fast progression- I am so beyond terrified. I am pregnant and absolutely horrified of potentially passing this to my baby. Not to mention what to do about having more children (IVF with gene screening is very expensive so not even sure if that would be an option for us) is it considered unethical to have more kids knowing this is in my body?! I have no idea because one thing says that it is highly manageable with a normal life expectancy and most commonly very mild, and another thing says it is severe and ruins peoples lives!?
I am having an extremely difficult time with the fear it has been all consuming. The uncertainty of everything, being told that just because you have the gene doesnt mean you’ll get disease, yet my mom has it, and my brother most likely has it, great cousin most likely has it. That makes me feel like my odds are not great. No one else in the family wants to get gene tested.
All this to ask, is it actually likely that if you have a gene variant you can possibly never develop disease? Or is that a very slim possibility? What the hell makes these gene mutations SO uncertain with expression?!
I’m 33 years old, male, and I was recently diagnosed with apical hypertrophic cardiomyopathy after an echocardiogram. I’m still waiting to get a cardiac MRI to understand more clearly how serious it is and what it means for me long term.
I’m trying to understand whether anyone here has experienced symptoms similar to mine.
My dizziness actually started back in 2024. Around that time, I began having dizziness, headaches, brain fog, and a strange “off” feeling that lasted for about two months. Little by little, I improved, but I honestly never felt like I fully recovered. Since then, I’ve often felt kind of dizzy or unsteady, especially when walking or standing. Driving and running usually felt better than walking, which made everything more confusing.
I was also diagnosed with BPPV in 2024, and later I was evaluated for vision-related dizziness/binocular vision dysfunction. I ended up getting prism glasses. I’ve also had symptoms that doctors have considered possibly related to vestibular migraine or PPPD, because busy visual environments, floor patterns, stores, hallways, and head/eye movement can trigger symptoms.
For most of 2025 and early 2026, I was still dealing with symptoms, but I was able to function better. I kept running and training. In May 2026, I completed an ultra marathon, about 31 miles / 50K. At the time, I didn’t realize there could be a heart issue. I thought most of my dizziness was vestibular or vision-related, so I kept training.
After that race, things got much worse. A few days later, I had a major dizziness episode while walking downtown. It felt like spinning and it triggered a panic attack. Since then, I haven’t really felt the same.
Since the ultra, I have not really trained because of my doctor’s recommendation. I’ve only tried a 1-mile jog, and even after that I felt very off afterward. It’s hard to describe, but after running I can feel dizzy, lightheaded, anxious, disconnected, or just not like myself. That has been scary because running used to be one of the few things that made me feel normal.
Now I’m experiencing dizziness more often again, especially when walking. I also get facial pressure, headaches, eye/facial soreness, brain fog, and random waves of dizziness during the day. The symptoms come and go, and sometimes they feel very random. I’ve also had palpitations and moments where I feel more aware of my heartbeat.
To be honest, I didn’t realize how serious apical hypertrophic cardiomyopathy could be until recently. I know the MRI will give more information, and I’m waiting for that, but I’m feeling scared and trying to understand what symptoms other people with HCM, especially apical HCM, have experienced.
Did any of you have dizziness, brain fog, headaches, facial pressure, or symptoms that felt vestibular before or after your diagnosis? Did exercise make things worse for anyone? Did anyone feel very off after even short runs or light jogging? How did your symptoms present, and did the cardiac MRI change your treatment plan?
I’m not asking for a diagnosis, just trying to hear from people with similar experiences while I wait for more testing.
21 year old male with HCM considering a ICD. Was just curious how everyone’s experiences has been who has one. Also if anyone in here has or had one at a younger age.
Doc thinks this is hypertensive lvh, wondering could it still be HCM