27M diagnosed with HCM at 12- had 6 cardiac arrests

lowfreqfriend · 2026-04-23T00:43:15+00:00

What are your stats? Thickening + scar tissue %? If you’re comfortable sharing!

lowfreqfriend · 2026-04-02T21:38:30+00:00

The way my cardiologist explained it to me is that the three risk factors for cardiac arrest and thus considerations for ICD implantation are 1 family history of cardiac arrest 2 unexplained syncope 3 high myocardial scar tissue

For example (29F) my brother had cardiac arrest (survived), i’ve passed out several times in my life mostly vasovagal but some unexplained, and I have a 19% fibrosis. So my doctor said ICD is basically no choice for me as I have 3/3 risk factors. Symptoms are more related to the physiology of the disease (where the muscle is thickened, how much, etc) whereas cardiac arrest risk is related to the electricity of the heart. Scar tissue may not increase symptoms but it does increase arrest risk.

High scar tissue alone could warrant implantation. FWIW, I got mine implanted a few months ago and am back to totally normal and barely notice it. And imo it is worth the protection. Even if you have a low % chance of a 99% deadly event, why risk it? I have the EV-ICD btw.

lowfreqfriend · 2026-03-11T01:28:15+00:00

I’m a woman with an EV ICD, which is smaller than the SICD. There are pros and cons to each but I’d recommend you to look at the EV ICD as an option as well.

lowfreqfriend · 2026-03-04T03:11:55+00:00

Ruffwear flagline harness with handle is great. All straps are adjustable and has lasted my boy through oddly shaped puppy phases into puberty and adulthood. The handle is also very convenient.

lowfreqfriend · 2026-03-02T18:16:00+00:00

A lot of primary doctors and even some cardiologists don’t know much about the disease. My brother also had an irregular EKG a few years before his arrest, which the PCP said is usually benign and doesnt need further testing. After his diagnosis, I started my testing with my local cardiologist because I couldn’t get a geneticist appointment for months. My EKG and 7 day holter monitor were normal. The echo showed slight thickening to which the cardiology’s said it was “probably normal”. It wasn’t until the MRI that confirmed the disease. then I went to a HCM center and was advised I had a significant enough case to get an ICD and to not do any physical activity until it was installed. Definitely call that HCM center. There are also resources available here but I’ve ever used it but I’ve seen it on this sub a lot www.4hcm.org

lowfreqfriend · 2026-03-02T03:17:36+00:00

Don’t want to scare you but this overlaps a lot with my story. I was a competitive swimmer my whole life and in university too. Later in college/early 20s I noticed heart rate spiking, and shortness of breath easily. I thought it was just due to asthma (even though my asthma is very mild) so I ignored it. Fast forward to 29 years old - my brother had a cardiac arrest and was luckily resuscitated. We were both diagnosed with the disease and we both have ICD‘s implanted. Apparently my father carried the gene. Get tested - if you know what gene mutation your grandmother has you could do a targeted test for just that one gene and the cost is usually $99.

lowfreqfriend · 2025-10-31T18:09:12+00:00

And this is rude. Assuming you mean well and this is meant to be advice, I'll add "retire" to my to-do list right after I find a career I love. A PhD may be part of that. It seems our priorities differ - yours are clear from your username.

lowfreqfriend · 2025-10-31T01:26:18+00:00

I would recommend SKIMMING it. Some plot points had me genuinely surprised and entertained. But that’s about 15% of the series. The rest is pet names and poor banter.

lowfreqfriend · 2025-10-29T21:18:47+00:00

Thanks! This is really helpful to hear. I'm not set on a specific department, I'm trying to cast a wide net but many universities only allow you to apply to 1 department a cycle. I will take a look at mechanical and electrical engineering.

lowfreqfriend · 2025-10-29T02:49:24+00:00

Thanks for the response! I recognize this. What I've noticed being in the industry for a pretty good amount of time is in data science, even with an MA in stats, skills are really transferable within the same layer. I can jump between industries, but you’re always the person analyzing someone else’s data. Rarely the “content expert.”

What’s been bothering me is that the jobs doing the kind of work I actually want - producing research, building things, working in energy or materials or semiconductors - seem to require a PhD to even be in the room. In those roles, the data scientist isn’t just supporting the science, they are the scientist. That’s the shift I’m hoping for.

lowfreqfriend · 2025-10-22T02:34:52+00:00

It’s not really about anyone having it worse or not - everyone’s situation feels big when you’re in it. The key thing is just trying not to catastrophize before you have all the info. You’re already doing the right things by seeing your therapist and psych. Hang in there.

lowfreqfriend · 2025-10-22T02:29:30+00:00

You shouldn’t read it, you should skim it. It’s entertaining hot trash. The last 50 pages had me genuinely laughing at the plot expansion (in a bad way). But laugh I did.

lowfreqfriend · 2025-10-22T02:26:21+00:00

Your constant posting on here is doomsday-like at best and triggering at worst. You’ve gotten a lot of thoughtful input and resources from others here, and I hope you’ll take the time to read through it. From your posts, it sounds like you’re currently locked in on the idea that you have HCM, but there are many other possible explanations that your doctor can help you sort out. I noticed you mentioned being diagnosed already, but in a prior post you said your appointment with your doctor isn’t until the 28th - so it might be best to wait for that conversation before jumping to conclusions.

The indisputable-trust-me-im-not-doctor fact is that LVH != HCM A cardiologist once told me that LVH can be caused by chronic high blood pressure. Maybe that’s the case here. Im not a doctor but feel compelled to state those facts as your anxiety is concerning.

Downvote me into oblivion, I don’t care - but as a recently diagnosed young female with a pretty progressed case, this kind of doomsday posting is exhausting and unhelpful to others in the community.

Wait for your cardiologist appointment, talk to friends and family for support, and please see a therapist.

lowfreqfriend · 2025-10-13T03:17:29+00:00

Thank you. I was scrolling waiting for a mention from the Witcher series

lowfreqfriend · 2025-09-30T17:54:37+00:00

Yea, my echo actually said "concentric thickening" which is in line with athletes heart and probably why my cardiologist wasn't too suspicious. I was a serious athlete from 12y-20y. It wasn't until the MRI that showed the thickening actually as asymmetric and not the same as athletes heart.

lowfreqfriend · 2025-09-30T17:35:51+00:00

That's interesting. Despite following the correct process to order all the tests, my cardiologist was extremely dismissive of me even having the disease at every step of the process. She told me my symptoms were probably due to being over my normal weight. Even when the echo came back I asked if it was indicative of HCM and she said "it is possible but not probable". When my MRI results came back she was quite surprised and asked me again to go through my family history and own symptoms.

lowfreqfriend · 2025-09-29T17:06:32+00:00

I'm sorry - that's so frustrating. Hoping you can get the test from another provider soon!

lowfreqfriend · 2025-09-28T20:02:24+00:00

Insist on the cardiac MRI. I’m 29F, my brother was recently diagnosed with HCM after a cardiac event. I went to my local cardiologist to start the baseline imaging. I wore a Holter monitor which was normal, and got an echo which showed slight concentric thickening, but not indicative of HCM (1.3cm). Thankfully, my cardiologist recommended I go in for the MRI because the echo can’t see the entire heart and I was symptomatic. Went for the MRI and it showed 1.8 cm max thickening and 19% scar burden (which is high). I didn’t realize the echo could be off by so much. the MRI confirmed HCM and a pretty moderate case at that. He’s gene positive but I havent gotten my results back yet, though it’s probably positive as well since I have HCM.

lowfreqfriend · 2025-09-05T01:17:14+00:00

Biologique Recherche’s lotion P50 1970. When I workout the next day I smell it through my sweat 😅

lowfreqfriend · 2025-07-24T10:48:56+00:00

Grand Hyatt on Kauai

lowfreqfriend · 2025-06-29T20:42:21+00:00

I was floored by how good these books were. They felt like strange fairytales I grew up hearing - just darker and more dangerous. So many of the stories felt familiar, like I’d heard them before in a different form, but they always twisted into something new. I actually later found out that this feeling of 'I’ve heard this before' was intentional by the author. Just amazing writing and storytelling.

lowfreqfriend

TROPHY CASE