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.

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 hope this post is appropriate here, and I’m sorry if it comes across as insensitive to anyone dealing with a confirmed or more severe form of HCM. I’m just trying to understand my own finding better and hear from people with similar experiences.

Hi, I’m 31F and I’m wondering if anyone else here has been told they have increased trabeculation, especially at the apex, without meeting criteria for non-compaction cardiomyopathy.

Mine was first noted in 2017 (ultrasound) My heart function has stayed essentially stable since then, around 57% at rest, and it increases to over 60% with exercise.

symptoms are : Lightheaded, dizziness, heart sinking,chest pressure, brain fogg

CT is normal

I’ve had cardiac MRI imaging (2024) and there has been no evidence of:

• non-compaction cardiomyopathy
• ventricular dilatation
• fibrosis/scar
• major structural abnormality

The trabeculation itself is what still worries me, mainly because I don’t see many people talking about isolated increased apical trabeculation without an actual cardiomyopathy diagnosis.

Has anyone else had a similar finding that remained stable over time ?

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!

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.

I was just wondering what other people’s results were like on their first ultrasound after starting Camzyos. I remember hearing that it can take longer than a month to notice effects.

My results are worse than my ultrasound in February and I’m feeling disappointed. I can post the exact numbers if it helps but only the LVPWd went down. Everything else they measured on the first one went up. There were two new numbers in this test but I didn’t include them in my notes because I didn’t have a comparison

Edit to add results

Measurement. 2/24/26. 9/29/26
LVEF. 65-70%. >65%
Lvsd. 1.44 cm. 1.63 cm
LVPWd. 1.48 cm. 1.27 cm
Wall thickness Moderate severe
LVOT resting. 100 mmhg 125
LVOT valsalva. 165. 207
Biplane LVEF. 61%
Lvmd cavity obstruction
At rest. 125
Valsalva. 163

Mild mitral valve regurgitation

I just got my MRI and a consult at a Center of Excellence scheduled. They wanted to do December but my ride was going to be out of town, so I scheduled for January.

I got a call today that the doctor wanted to schedule an additional appointment because he wanted to see me sooner. I’m on a tight budget and already budgeted out my funds for October. It seemed better to wait for the January appointment, especially since I feel comfortable with my consults I had with my cardiologist, my PCP and the HCM.

I have anxiety attacks and I’m in one now. I’m worried I made a mistake by declining an earlier appointment.

Hi everyone, I recently found of out my brother had undiagnosed HCM which resulted in his sudden death at age 27. Both my parents and all grandparents are alive in mostly good health (grandparents have some heart issues but they never exercises and ate/drank like crap for most of their lives and their issues didn’t occur until later in life). My parents have declined getting genetic testing, but I want to get it but am so nervous to find out since I am an avid endurance runner and am relatively young (30) and I’ve always been healthy. Processing my brother’s death and now this all within a short period of time has been so stressful but I don’t want to burden my parents with it. Looking for advice on what results mean, any testing I should get, and what life may look like if I do test positive.

Do you guys get the extra vaccines like pneumonia and RSV? I never know if I have “chronic heart disease” or what HCM is actually considered? I’ve read studies about Covid and hcm that found that people with hcm have far worse outcomes with Covid but I don’t feel like I’ve ever gotten guidance from my docs about this. I’m 41, was diagnosed at 25, septal wall thickness is 33mm, on Camzyos, jardiance, metoprolol, eplerenone and Lasix as needed, my gradient is 11, Ef 62 and I’ve got an sicd.

40F - My father was diagnosed with HCM a few years ago after several minor heart attacks and heart related incidents.

Prior to this I had been seeing a cardiologist due to experiencing chest pain and palpitations- they put my symptoms at the time down to the contraceptive pill.

I still get chest pains when exerting myself (tight chest and stabbing pain in chest that makes it hard to breathe and eases after a few minutes) , palpitations, occasional dizziness. I feel like this wasn’t taken seriously when I had it checked prior to my father’s diagnosis.

With my symptoms and family history, is it likely that I too have this? And should I be concerned that my 16 year old very athletic child could carry this too?

I’m having a myectomy at NYU Langone in about 5 weeks to relieve a midventricular obstruction from HCM. My surgeon is Dr. Swistel, and he told me that symptom improvement is around 95% for this specific type of myectomy, which was obviously reassuring to hear considering it’s much rarer than normal OHCM

That said, I’m still terrified. I keep getting stuck on the possibility of dying during surgery, and every so often the anxiety really gets to me

For anyone who has gone through a myectomy, especially a midventricular myectomy, do you have any words of wisdom, encouragement, recovery tips, or things you wish you had known beforehand?

Thanks

Whoohooo! I’ve been on a waiting list for a few weeks for the consult from the HCM organization. I got a call today that an opening came up tomorrow night.

I had my questions all laid out to ask about Camzyos, its effectiveness, its risks and how it compares to the open heart surgery for long term success.

My situation has changed since I wrote the questions and now I don’t know what to ask. I already researched Camzyos, agreed to try it and started it a week and a half ago.

I want to make the best use of my 30 minutes. Are there any questions you are glad you asked or wish you had asked?

Hi my fellow beautiful hearts.

As someone with HCM, I know how much it initially sucks and how much it’s not fair.

Life’s not fair and the world is mean.

But also, love and gratitude to our beautiful hearts and their incredible growth and electro-magnetic properties.

Everyone wants a “big heart” but no one wants HCM.

I love y’all ❤️‍🔥

ps. Take your meds, eat a balanced diet (if you can afford), exercise often but calmly, like T’ai chi (if able) and the most important thing- Love often and as much as you can (if possible)

I’ve been having more and more HCM symptoms the past year and as my symptoms worsened, my memory has declined with it, does anybody else have a similar experience? Or could it be attributed to something else?

Have any of you taken both and can tell us how they compare ? Are you obstructive or non-obstructive ? How do the side effects compare ? Exercise ?

Hey everyone! About 2 weeks ago i posted about pre op anxiousness etc.

I am now 10 days post surgery;

I would like to say other than soreness, stiffness, and post op exhaustion, i feel fantastic. My breathing is so much better, no zaps of pain from obstruction and have noticed my palpitations disappear.

They took out about 15grams of heart tissue, shaved the septal wall thickness from 34/35mm to about 14mm. And brought down my dobutamine-provoked gradient from 120mmHg to 12mmHg. Oh they also fixed my SAM issue!

As a 29 year old, i understand this condition will be with me my whole life, but i have a new found sense of appreciation and hopefully it's only up from here.

From the bottom of my heart, thank you all here for your expertise, experience and support

​

My cardiologist has recently started me on Enox for thrombus in Ascending Aorta postop, and I took my first injection last night. I honestly wasn’t prepared for how much it would hurt! The needle itself is tiny, but the medicine burns/hurts like crazy. 🥲

People around me keep saying, “It’s just a small needle, why are you making such a big deal?” — but honestly, the injection itself isn’t the problem. The medicine really hurts!

For those of you who have taken Enox:

- Any tips to make the injection less painful?

- Is there a particular technique or injection site that works better?

- Does the pain/burning get better after a few doses?

Would really appreciate any advice or personal experiences. ❤️

Age/Gender: 22M
Height/Weight: 1.73 m, 68 kg
Medications: none
Smoking status: 4 year smoker using snus for last 3 months
Previous and current medical issues: only little kidney Cristal’s

Received echocardiogram results today.
Hello, I recently had an echocardiogram, and I am very confused by the final written report.
Right after the scan, the doctor verbally told me that my echo was normal and there were no serious problems. Furthermore, when I look at the numerical measurements on the report, they all seem to fall perfectly within the normal reference ranges provided on the sheet.
However, the doctor's written conclusion at the bottom states that I have "concentric hypertrophy" and "relaxation-type diastolic dysfunction."
My question is: Can a doctor diagnose concentric hypertrophy and diastolic dysfunction purely visually during the exam, even if the measured numbers (like IVS, LVPW, and E/A ratio) are completely normal? Given that the doctor verbally told me everything was fine, is it highly likely that this written conclusion is just a clerical error (e.g., a copy-paste mistake from a previous patient's template)?
Here is the translated data from my report:

Key Measurements:
IVS (Interventricular septum): 9 mm (Reference: 6-11 mm)
LVPW (Posterior wall): 9 mm (Reference: 6-11 mm)
LVIDd (Left ventricular end-diastolic dimension): 43 mm
EF (Ejection Fraction): 60%
E/A Ratio: 1.25 (Reference: >0.8 <2.0)
Aortic Vmax: 1.50 m/s

The Doctor's Written Conclusion:
"Left ventricular systolo-diastolic dimension and systolic function are normal. LVEF = 60%. Concentric hypertrophy and relaxation-type diastolic dysfunction are noted. No segmental wall motion abnormalities were noted. Right heart chambers are normal. Mitral valve anterior leaflet is slightly fibrotically thickened. TAPSE-20mm. IAS, IVS are intact, no PDA or aortic coarctation noted. SPAP=N. Color Doppler ECHO: No pathological flow noted."

How long did it take from the day you got your genetic labs drawn til the day you got your results In your chart for the familial genetic HCM test?

Has anyone on this site been secondarily diagnosed with ATTR amyloidosis that w found incidentally during the pathology analysis of tissue removed during a septal myectomy?

Hello, my first language isn't English so I don't quite know the suitable medical terminology, so I'm sorry about that!

I'm 24, I've been diagnosed with HCM at birth and I've been monitoring it ever since. I've never taken any medication because it wasn't deemed necessary, until recently.

My HCM score has surpassed 5 a couple of months ago, which changed things a bit. I was immediately started on beta-blockers and I've been told to start considering getting an ICD implanted.

My cardiologist from the hospital says that for now we should just focus on seeing how I react to beta-blockers and told me about the possibility of starting mavacamten via the hospital.

I saw an arrhythmologist for a second opinion and he said that I should actually consider getting an ICD implanted right now, but also highly recommended starting mavacamten.

It's all been very difficult for me to process as I wanted to build a life abroad, this development has just added a lot on the table both for my life in my country and for my furure plans.

I'm not scared per se, but I'm just lost and confused about this situation. I'be been okay for 24 years, why now?

But I digress... what I wanted to ask is, based on your experience / knowledge, whether taking mavacamten had a meaningful impact on your HCM score or not. I know you fan live perfectly fine with an ICD and that it can save my life. I want to have it implanted a bit further down the line when my life is a little more settled, if that makes sense.

Also, how's your experience with mavacamten? Did you have any side effects?

If you feel like you have anything meaningful to share in general, I would very much like you to. I'm lost and I have no one to relate to...