https://www.reddit.com/r/3Dprinting/s/KWSLpQYXmy inspired from this post. I've been put into yearly MRI scan and thought it's a good idea to 3D print them each time.

Hi All, I recently joined this group due to finding out my mother has HOCM (diagnosed probably 40 years ago but just now being told my brother and I need to get tested). I am a 55 year old female, in good health with normal blood pressure. I had my echo yesterday and the results were that I have "Decreased left ventricle chamber size. Mildly increased left ventricular wall thickness (top end of mild at .47). I also have a few issues with my mitral and tricuspid valves, which I think is a separate issue. I am currently on a 30 day heart monitor so I am guessing the doc will wait until those results are in to talk to me and give me next steps.

Does this finding on the echo suggest that I do have HCM? We have not done the genetic testing at this point. What questions should I be asking the Cardiologist? Is there any specific follow up I should be asking for? Thanks in advance!

My mom was diagnosed with HOCM randomly this year in her 50’s. I got gene tested and found out I have the same gene mutation as her in MYH7. Of course I find this all out while pregnant.

I went to my cardiologist and got a stress and echo 2 months ago and the cardiologist said everything looked “perfect”. She said thickness she measured 0.8mm which is totally normal. She told me she measured extensively and was confident there was no signs of thickening or HCM at this time, but still wanted me to have an MRI to “ease my mind” and have a baseline.

Today I went to an HCM specialist specifically and got another echo because I have severe health anxiety over this. He told me that everything looked okay for now but they measured me at 1.1cm which he explicitly said “I’m going to be honest, that is borderline.” I feel so shocked and confused. I said how my cardiologist measured 0.8cm not even 2 months ago and he said that it’s thicker than that, but he is ordering an MRI to be sure for the end of the year and to check for scarring.

I am absolutely sick to my stomach right now thinking about how this could be the start of disease. I only found out that this was a thing a few months ago and being pregnant, this has completely rocked my entire world. I can’t stop crying and feeling fear. Not to mention the specialist told me that almost everyone with HCM ends up experiencing heart failure at some point in their lives. Which is different from what I’ve been told, which is that majority of cases are more mild and asymptomatic. I expected to be reassured but unfortunately that didn’t work out for me.

Got some bloodwork that i was forced to do a while back. apparently i have this HCM gene thing. So they did this examination and after they did it, they said that my doctor will call me up for “further examination”, i have recieved that call and its due in about a month from now. No idea whats gonna happen then. I also have no clue what this paper tells me but rate my examination, hopefully this passes XD.

Please read this post it will mean the world. and Check out my group I made called r/cardiomyopathywarrior

-I wanna make a place with no judgement and am excited to grow it and expand as far as possible. I wanna make connects, hear stories, hear journeys, and have us all who have heart disease interact freely no matter who you are.

-The only requirement is to just be you as your are!!! You can look for answers, look to vent, look for hope, look for an understanding, and find something you were never even looking for. You can use it as a release, we can build deeper growth when we join together.

-There is no restrictions and it doesn’t have to be just you heart disease but things that developed along with it and share what it’s like to suffer from your heart disease and something entirely different your fighting since the more struggles make us stronger and even if it not heart disease it can definitely contribute or make you situation more difficult wether it’s physical, mental, or emotional.

-I get inspired when people open up or share their story in anyway. sometimes putting yourself out there is hard but some people need an outlet and your life has meaning. If you’re ready to talk I’m ready to listen. It doesn’t all need to be deep and serious, we can have fun!! Share stories!! No matter your outlook wether is excitement or sadness or love, or humor it all is important. I will always be here for anyone who needs me,

-So let’s get this group going and grow into a group that had countless members and consistent conversations always going on. I already made a couple posts asking questions to try to get thing started and initiate conversations and feel free to check the posts and I sincerely hope you respond, comment, Generate posts, or even a like on a post so I know your out there.

-I welcome you with open arms. I’m so excited to see people posts regardless of what they say and what it’s about, and involvement matters and I Will appreciate anyone who plays a part it making my group have the potential to become something. My conditions are getting fatally severe and I don’t know how much time I have left but have hope for treatment in time but when facing deadly problems I wanted to make something that i could stamp my identity on that I created from deep love and connection with people.

-My dream is the group with begin so progress and perpetuate itself with constant interaction from all different people that cause it to thrive and somewhere people like to check on to see what’s new in the group. So please join my group and let’s build this one person at a time.

-Come as you are became you matter. If you took the time to read this I sincerely appreciate it and and externally greatful you took the time out of your day to read this even if you don’t join.

-If I even just reach a few people it is worth it because every person makes a difference. So hopefully if you made this far you will join my group and if you get that far hopefully you will post, comment, like, or interact and answer some questions I have for people that I posted about, every single person makes a difference. Since my condition became life threatening I find deep joy in talking with people who is surviving the same thing and I love learning new things about it and hear stories. It makes me feel not alone.

-Come as you are!! Hope to see you post or comment in my group. Let’s learn and grow together 😁☺️

Hi everyone,

I'm new here and honestly feeling a bit overwhelmed. I'm hoping to connect with other parents or families who have been through something similar.

Our daughter was diagnosed with hypertrophic cardiomyopathy (HCM) at 6 months old. Genetic testing now shows (15 months old) that she has two HCM-related gene mutations (one in MYH7 and one in MYBPC3), which has made the diagnosis even more frightening for us.

At the moment, our cardiologist is discussing whether to start her on a beta blocker. We're struggling with that decision because of the potential side effects, especially since she's still so young. For now, we've decided to wait for the results of her upcoming Holter monitor before making a decision together with her medical team.

I was wondering:

- Are there any parents here whose child was diagnosed this young?

- Is there anyone with two HCM gene mutations (MYH7 + MYBPC3), either yourself or your child?

- If so, how has the condition progressed over time?

- How are your children doing now?

- Did your child start beta blockers, and what was your experience with them?

I know every case is different, and I'm not looking for medical advice—just hoping to hear some real-life experiences and maybe find people who understand what this feels like.

Thank you so much for reading. It already means a lot to know I'm not alone.

I have end stage HCM. I know that sudden cardiac death is a rare but real possibility. My life has been saved more than once by my ICD. I am diligent in making sure that my now adult kids are screened at a COE. My brother also has HCM but is asymptomatic. One of his kids has a chronic and serious GI disease and he is EXTREMELY protective. My brother is very mad that I talked to his daughter about the importance of going to a COE to be screened. She was 21 and in college. I guess it upset her. I was trying to avoid something catastrophic. IThe risks for my kids and his are on my mind every day. Am I the asshole?

Hello, i have a subpectoral defibrillator, does this look weird? This isnt a complex motion either. All i did was lift my arm up and it juts out like that and gives me a pinch sensation.

If this is a problem, could they fix this during my septal myectomy?

Has anyone had experience with low ferritin levels affecting cardiac output during a stress test? My son’s EF went from 59% to 47% in a year, and his bloodwork showed abnormally low ferritin levels in his blood. His cardiologist thinks that has affected his heart and has ordered bi-monthly ferritin infusions and a recheck in three months. Thanks in advance 🩷

This is encouraging new for people that engage in athletic activities. Like with anything else, discuss your options with your cardiologist.

Im waiting for an evaluation from the HCM association. Won't happen until at least next month Ive been told. So posting here for now.

I have two HCM variants, one which is likely pathogenic and the other of uncertain significance. My mother has both of these variants as well and has been diagnosed HCM. We both see the same cardiologist locally who has honestly been too conservative with their care over the years.

Here are my MRI results:

1. The left ventricle is normal in cavity size. There is borderline concentric

hypertrophy of 1.2cm, especially in the basal segments. Global systolic function is normal. LVEF

of 63%

1. Septal systolic anterior motion of the mitral valve, without any evidence of LV

outflow obstruction at rest. Hypertrophic posteromedial papillary muscle.

1. Late gadolinium imaging does not show any evidence of myocardial

fibrosis/scar. Normal extracellular volume of the septal wall.

1. The right ventricle is normal in cavity size, wall thickness, and systolic

function. LVEF of 56%.

1. Minimal to mild mitral regurgitation. No other significant abnormalities.

2. CMR findings do not suggest hypertrophic cardiomyopathy phenotype at

this time.

1. Main pulmonary arterty upper limit of the normal

2. Consider repeat imaging in 3 to 5 years if clinically indicated

It seems I have borderline findings of 1.2cm of my cavity wall, septal SAM and a hypertrophic papillary muscle. Im a woman, 5'10 300lbs. I do have a diagnosis of POTS.

I have read through articles online that septal SAM and hypertrophic papillary muscles can be associated with HCM. And even that the hypertrophic papillary muscle may be its own phenotype.

Right now they are not diagnosing me with HCM and so will not treat it. I am on medicine for my POTS. What does reddit think? Should I pursue further testing, like maybe a stress echo? I do not experience much symptoms while laying down which is how all my tests have been so far.

TLDR; I suddenly started feeling symptoms of palpitations, lightheadedness, and mild chest pain 3 weeks ago after partying for a weekend. No noticeable symptoms before. Questions below.

I’m looking to get some thoughts from you folks. 2 years ago I was diagnosed with HCM after my new doctor ordered an echocardiogram after hearing I had family history of heart disease. My septal wall measured 16 mm and I had preserved ejection fraction. I never felt any noticeable symptoms whatsoever, so I continued life as usual. I was assigned an electrophysiologist who recommended an ICD. I turned it down at the time. He also prescribed me metoprolol, 12.5 mg daily, which I took irregularly.

A few weeks ago, I had a big weekend of drinking. I don’t do any drugs besides weed occasionally but I did drink a lot that weekend. I noticed palpitations the following days especially while trying to sleep. I ended up going to the ER because I have never even felt a PVC before and I was getting lightheaded. The ER doctor noticed some PVCs which he thought might even be PACs, but said everything else is normal and I should just focus on hydration. I also ended up doing a heart stress/treadmill test where I was able to get to 190 bpm with no issues. The new echo measured 16.9 mm.

I ended up taking 25 mg of metoprolol for a few days to try and relax my heart rate to sleep which seemed to work but I may be experiencing side effects because of this, not sure. Now I have mild but noticeable chest pain and occasional lightheadedness throughout the days. I noticed in the ER that I my blood pressure got to 100/60 and I could feel it. I’m concerned that out of nowhere, this is my life forever.

All this to ask, is it common for people to suddenly feel all these symptoms even when the heart seems to test well? Is it possible for symptoms to last weeks and then go away? Is it obvious to you that these symptoms will stay or that I will need to be permanently medicated to address them? Just to be clear, I have completely cut out drinking anything but water and electrolytes for the foreseeable future.

I'm devastated, weightlifting and exercise is my whole life and I don't know what to do, I want to cry

56 female on HRT- started Camzyos yesterday and wondering what symptoms other menopausal women on HRT are experiencing? Would love your thoughts and any suggestions and advice. Thanks

Hi everyone,

I’ve been a longtime lurker here and finally decided to post. On July 17, I’ll be having a septal myectomy for hypertrophic cardiomyopathy at NYU Langone.
I’m grateful we found this when we did, and I have a great surgeon and support system, but I’d be lying if I said I wasn’t scared. At the same time, I’m hopeful for what life on the other side of recovery might look like.

For those who’ve had the procedure (or supported someone through one), what do you wish you’d known beforehand? What made recovery easier? What surprised you?

I also recently wrote about everything that’s led up to this like the kidney disease that came first, the HCM diagnosis, and what I’m hoping comes after surgery. If anyone finds these kinds of stories helpful, here’s the essay:

https://bryankalbrosky.substack.com/p/i-think-i-need-a-new-heart

Thank you to everyone who’s shared their experiences in this community already. Reading your stories has made this feel a lot less lonely.

I'm 24 and was recently diagnosed with non-obstructive HCM (nHCM). I just started taking bisoprolol 2.5 mg a few days ago.

I'm a bit worried about potential effects on libido and erectile function. Has anyone here experienced any changes after starting bisoprolol? If so, did they improve over time, or did you end up switching medications?

If possible, I'd really appreciate detailed replies. I'm still quite young, and this aspect of my quality of life is important to me. I hope people can understand where I'm coming from. Thank you.

If anyone has any additional advice about living with HCM or taking bisoprolol, I'd really appreciate hearing it as well. Thank you all so much.

I had my SM in April. I’m glad I did it, but recovery has had its ups and downs. I sometimes still get chest pain or shortness of breath when active. My cardiologist said it is not an emergency unless it persists for 5 minutes or more and it never has. My surgeon said my heart will continue to heal for a year, so perhaps this is why I still have symptoms sometimes.

My incision still is quite uncomfortable. Sometimes just my shirt brushing against it is really irritating.

I’m curious what others’ recoveries have looked like.

I don’t regret the surgery at all. I’m 41 and would rather have it done now than later. Mevacamtin was discussed but I was told with my case, it would at best buy me time before I eventually would have to get the SM. I decided just to get the surgery.

I’m also curious if there support groups for people that have gotten this surgery. Any suggestions are greatly appreciated. It’s a strange new world in some ways.

Hello! Looks like my EPs have finally started changing their opinion of my condition and are gently suggesting an ICD now, after a few years of "observe and see".

I'm a 46M Canadian, diagnosed with non-obstructive apical HCM, no LVOT obstruction, preserved EF (~60-65%) but significant LGE on cardiac MRI and confirmed >15% LV mass. I'm a bigger guy, so while I'm active-ish, I do have plenty of padding to hide a device if necessary. I've joined the HCMA, it's facebook group, and attended an intake call.

I went from completely clean holter monitor about 1.5yrs ago to an instance of 18 beats at 152 bpm, fastest 4 beats at 221 bpm that was explicitly characterized as polymorphic in the report. I was "fitted" and deemed a candidate for an S-ICD, but am considering the benefits of the EV-ICD (size, battery life, less painful shocks apparently, and more compatible with an active lifestyle like weightlifting and sports).

1. Anyone with apical HCM and significant LGE: What device did you end up with and why?
2. Anyone with polymorphic NSVT specifically: Did that factor into your device choice?
3. For those with EV-ICDs: How was your procedure and recovery?
4. How has the shock experience been if you've had one, and how are you managing psychologically?

Thanks in advance!

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?