r/HypertrophicCM

Hello,

Just walked out of my cardiologist appt.
Been having echos for three years and just now they told me there’s a high chance I may have HCM.

A cardiac MRI is recommended.

On top of that, it has been confirmed I have a mitral valve prolapse.

I just don’t know what to make of it all.
I do get shortness of breath but I just assumed I was out of shape.

What should I expect?
Where do I go from here?
Should I be scared?

Sorry y’all… just typing away my thoughts and tryna process it all.

My mom has hcm and was started on mavacamten. She felt better in weeks. Her breathlessness had reduced and she felt more energetic. The lovt score had improved too in first 2 months. But then she started feeling mildly breathless ( though still much better than it was before meds). And in her latest echo, they found her ef dropped to 43%. Doc has discontinued mavacamten now and is focusing on resuming her ef. But we are sad that this did not work out. Has anyone gone through this ?

I feel extremely anxious because of the risk of sudden cardiac arrest associated with HCM (hypertrophic cardiomyopathy). Even though my estimated annual risk of cardiac arrest is only around 0.5–1%, and I have non-obstructive HCM with a maximum wall thickness of 21 mm, while several other major risk markers are also considered low-risk, I still struggle with this fear every day. (I have only just started my adult life, and I am also the only child in my family. If something unfortunate were to happen to me, I fear that my mother would find it extremely difficult to continue living.)

I am only 24 years old and have just entered the workforce and started my adult life. At the same time, my family has experienced multiple major setbacks involving financial issues, health problems, and unexpected risks. It has been three months since I was diagnosed with HCM, but I still feel anxious every day because of the possibility of sudden cardiac death caused by this disease. After all, I have only just entered society, and I have not even had the chance to truly experience and enjoy life as a young adult, which makes me feel deeply lost and disappointed.

At present, my medical indicators do not meet the criteria for my doctors to recommend ICD (implantable cardioverter-defibrillator) implantation. However, even if I eventually need one, under the current healthcare insurance conditions in my country, the cost of an S-ICD (subcutaneous ICD) or EV-ICD (extravascular ICD) could potentially consume almost all of my family’s savings.

Right now, I honestly do not know what to do. I am struggling with severe anxiety psychologically, while also facing significant pressure in my daily life. And all of this has happened simply because I was “unlucky enough to inherit a bad gene,” not because I actually did anything wrong.

I am sorry for sharing such a difficult situation. I truly feel terrible right now, and I do not know what I should do. Should I endure the financial burden and insist on getting an ICD implanted despite my current condition not meeting the recommended criteria? Or should I adjust my mindset, accept this level of risk, and wait until my indicators reach the point where ICD implantation is medically recommended?

Thank you all for taking the time to answer my questions. I hope that I can have the same courage and rationality that you all have.

I am a 65 year old woman and was diagnosed with hcm @ 7 years ago but I think I have had it for much longer I have always had a high heartrate and exercise intolerance that caused chest pain but I always thought it was because I was out of shape but because I was young the symptoms subsided quickly. To make a long story short I am on max doses of beta blockers and calcium channel blockers but my heart rate remains in the 80-90 range my dr wants it to be in the 60's but that does not happen. I just wonder if we are trying to correct a 50 year old problem that my body has adjusted to and meds won't fix. I have had a full work up to include a cath and echo which was both fine. I'm frustrated because I think I am taking meds for nothing.

To make a long story short , I had a bad cardiologist. He told me to never work out even a little bit. It’s not safe. I’m putting my life at risk. As a young guy who did combat sports and went to the gym this was devastating to hear. I tried to still workout, but was over conscious about my heart and got to the point I was having panic attacks and just stopped any athletic activity all together. It caused me to seek out a COE cardiologist. I just finished my echo with him and was told it’s fine for me to work out and lift weights just don’t push myself too hard, be aware of my body, etc. I’m still scared to get back into it though. Anyone got tips? For what it’s worth, my thickness is like 2.2 and I’m non obstructive. I’m on metoprolol, he said he wouldn’t reccomend me for avacamtem because I’m non obstructive and my symptoms don’t seem to call for it.

My husband is scheduled to have all three of these done in 5 days at Lahey in Boston (a COE).

I am very anxious. I’ve been trying to read through people’s experiences, but I cannot find anyone who’s had all 3 done at once.

He is otherwise healthy. 49 years old. Never smoker and a non drinker.

If someone has a similar experience, I would love to hear about it and especially the recovery.

Thank you!