I was diagnosed with HCM and I am very scared. I am very young and fear it will progress to heart failure. Does anyone know the survival rate or what u could expect to live to, especially given I’m so young and have many years for it to progress. I’d love to hear other people’s stories.
Hey r/HypertrophicCM,
Long-time lurker, first real post. I'm 34, diagnosed with HCM a few years ago. Like most of you, my life since diagnosis has been a mess of medications, echo reports, palpitation notes, and trying to remember what happened over the past six months when my cardiologist asks "anything new?"
Paper notebooks got lost. Notes app got cluttered. Screenshots of echo reports buried in my camera roll. Every appointment, I showed up scrambling.
I looked for an app that actually understood HCM. Nothing existed. General health trackers don't capture what matters for cardiomyopathy: LVOT gradient, wall thickness, ejection fraction, episode triggers, medication adherence in context. Symptom-only apps miss the document side. Document storage apps are just photo albums.
So I built one. It's called HCM Companion.
What it does: Medication tracking with reminders and one-tap "taken" logging. Episode and palpitation logging with duration, severity, and triggers. Document vault for Echo, ECG, MRI reports with HCM-specific structured fields. A timeline view that pulls everything together by date. A "doctor visit report" feature that generates a clean summary you can hand to your cardiologist before appointments.
What it isn't: No ads. No data selling. No account required. Everything stays on your phone. Not medical advice, not a replacement for your cardiologist, just an organization tool.
The core app is free. There's an optional Pro tier for advanced insights (trigger pattern analysis, weekly summaries, formatted reports) but the main functionality is fully usable for free.
I'm not a developer by trade. I'm a patient who got tired of being disorganized about something this important. This is version 1 and I'm actively improving it based on feedback, which is the actual reason I'm posting.
If you try it, I'd really value your thoughts. What's missing. What's confusing. What HCM-specific feature you wish existed. This subreddit has the exact expertise I need to make this app actually useful for our community.
iPhone only for now. If there's enough Android interest I'll build that next.
https://apps.apple.com/tr/app/hcm-companion/id6762368597?l=tr
Thanks for reading, and strength to everyone here.
Edit (8 days later): Wanted to add an update since a few of you asked about the medical accuracy side. After this post I showed the app to my own cardiologist at a routine appointment. He looked at it carefully and offered to help develop the educational content. So procedure explainers (echo, MRI, ICD, myectomy, septal ablation) and medication info will be added gradually with his review. The tracking and journaling side is the same, that's still patient-driven. Just wanted to be transparent about how the medical content is being built since it's a fair concern.
Also, to the people who asked about Android: I hear you. It's the most requested thing since launch. I'm working on it but can't promise a date yet, doing it solo. Will post here when there's news.
To anyone who downloaded it: if it's been useful, an App Store review would genuinely help. Even one line helps other HCM patients find it.
I'm a 31 year old male, and have HCM after being diagnosed in 2025. I've been considering doing a half marathon (very fit) but not sure because the doc said to not do endurance or high intensity sports.
What's confusing is I've been extremely active since childhood (played most competitive sports, including soccer) and the diagnosis which only came last year.
Seeking any opinions or experiences on this.
I have hypertrophic obstructive cardiomyopathy. I’m a 24 year old Male. 5’9” 156 pounds. I mostly only have symptoms when working out like a rapid heart beat and shortness of breath, but I know those are also just normal to have when working out. I’m pretty constantly paranoid about my heart and having a sudden heart attack or something. Does anyone else have the same diagnosis and symptoms? Currently on 50mg of metoprolol. At what point do doctors recommend surgery? I guess I’m just asking for advice on how not to constantly fear randomly dropping dead
I am curious what people here use for optimal hydration. For basically 4 years I relied on plain water, coconut water and pedialyte daily for hydration. Unfortunately this raised my A1C deep into pre diabetic range. As a result, I switched to LMNT since it is 0 sugar. I was able to lose weight and lower my A1C but it is too much salt for someone unable to rigorously exercise like myself. 2000 MG of salt in a day is no joke. I’ve seen ads for nectar and other brands but I was just wondering what gave you all the best results?
Hello! My father was recently diagnosed with HCM. I'm 27 years old and generally healthy, active, and asymptomatic, but I'd like to get screened just in case. But before I do I'd like to have a life insurance policy in place, since I understand that if I do end up having HCM it could be impossible to secure afterwards. I had never even thought about life insurance before this, so I don't really know where to start or how to navigate this.
Has anyone else in this group faced this situation? I don't know how to find a reputable broker or a policy provider who can insure me fairly. I want to avoid applying to insurance companies willy-nilly, since I learned that if they reject me it can end up on my public MIB record and this could impact my rates with other providers, or my ability to even secure a policy with another provider. Any advice for companies, brokers, or relevant next steps? Thanks so much!
My cardiologist is sending me to an HCM Specialist…the appointment is 33 days away. I’m freaking out. Just got my MRI back….
Overall, findings are consistent with significant left ventricular hypertrophy, with asymmetric severe septal hypertrophy, maximal wall thickness of 2.7 cm. Based on T1 mapping and GE images there appears to be diffuse fibrosis, LV LGE quantification is challenging due to lack of normal reference segment. There is mid and apical cavity obliteration, chordal SAM with flow acceleration in the LVOT.
Overall, this degree of hypertrophy, fibrosis is more concerning for hypertrophic obstructive cardiomyopathy rather than hypertensive heart disease.
Recommend referral to HCM clinic for further evaluation. Diffuse mid myocardial late gadolinium enhancement, RV insertion site late gadolinium enhancement. LV LGE quantification is challenging due to lack of adequate normal) segment.
T1 mapping values are elevated, consistent with interstitial fibrosis.
LVEF: 60 %
Findings:
LVEF: 60% RVEF: 72 %
Normal left ventricular volume index, systolic function, and wall motion. LVIDd: 4.7 cm. Asymmetric severe basal septal hypertrophy, maximal wall thickness of 2.7 cm in the basal septum. Adjacent basal lateral segment measures 1.4 cm. There is mid to apical LV cavity obliteration, chordal SAM with flow acceleration in the LVOT. Global peak wall thickness 27mm.
So.. 2 years ago i got a routine ekg and when the doctor came in he looked visibly confused/concerned and ordered another one and echo. I was told that it looked like HCM and to just take it easy on the salt(?).. such great advice. Anyways, I probably should’ve taken that more seriously but I graduated college, moved states and changed insurance so my doctor obviously changed. Fast forward to November 2025: Im now a year into my marriage and find out I’m expecting my first baby. I started experiencing increased heart rates and thought maybe I should get this checked out again because it’s not just about me now. I was in a ignorance is bliss mindset up until this point.
I got seen by another cardiologist, did my EKGs, and just got my echocardiogram done yesterday. These were the findings:
Left ventricle: Severe LV hypertrophy is noted. There is severe asymmetric hypertrophy of the septum. The appearance is consistent with hypertrophic cardiomyopathy. Overall left ventricular systolic function is normal by by visual assessment. The estimated ejection fraction is 65-70%. There is dynamic obstruction at rest in the outflow tract, with a peak gradient of 27mm Hg. Left ventricular diastolic function is indeterminate.
What does this mean for me? Has anyone else been diagnosed this early? I’m literally so scared, confused, and honestly angry. I feel like I’ve been handed a life sentence or something
Hi everybody. M52 here, from the Netherlands and wished to share an update for the last mri after starting with mavacampten. The mass of the obstruction went from 264 grams, to 180 grams…..I couldn’t believe what I heard. Just wished to share this great news here !
I’m 24m I have health anxiety and multiple sclerosis. I played football through highschool wrestling etc. I workout now 4 days a week run 1 day a week. I started getting PVCs when I was 20. I rarely drink. I only drink water no soda/caffeine. I went to cardiologist and did a stress test, holter for 48 hours, a small pocket ultrasound and tons of EKG’s. Cardiologist said I’m good. And wouldn’t do an echo. I’m so worried I have HCM. PVCs, air hunger constantly have to yawn always feels like I can’t get a satisfied breath, and dizziness when working (physical labor). I really don’t want to die young. Or have some catastrophic event. No one in family has died young of anything. Only heart issues when grandparents got into 70s. AFIB, and pacemaker and blockage. Any tips?
If you haven’t seen the news an Avacamten study completed a phase 3 trial and showed good results for symptomatic NON. obstructive HCM patients. Dr Marty Maron said it’s transformative.
https://www.youtube.com/live/-AJ7mMuaUMY?si=kZP13ImxGv14ieX1
I have apical hcm that I think is non-symptomatic. It was found incidentally before a routine procedure and I had not noticed that anything was awry. But since diagnosis, every now and then I feel dizzy or tired or I have head rushes and I wonder if those are symptoms?
Those of you with apical, do you have any symptoms at all? I’m thinking about it a lot and I wonder if that just makes me more conscious of how I’m feeling.
Also randomly I donated blood on Friday and my blood pressure has been so low since then. Maybe that’s normal for donating blood….
Anyhow, I’d love to hear those of you with apical, what symptoms you have if any.
My second question: I don’t have a gene for it and I had a full cardio echo in 2019 and I did not have it then, so I know it’s relatively new.
Does anyone have any inclination of what could worsen apical hcm? I have the recessive gene for hemochromatosis and I know I had very high iron a few years ago…. And I have the gene for gout, although I’ve never noticed high uric acid levels… Just musing if I should be worried about my iron or uric acid levels. I’ve been conscientious about drinking every water every day, and getting exercise and eating well…
I’m just feeling like - if this wasn’t something I was born with, is there anything I should be proactively doing to hedge my bets in the hopes that it doesn’t progress too quickly.
Thank you all for any advice.
Hi,
TLDR: U.S-based nurse seeking cardiology experts opinions on brother’s (35/M) cardiac condition in W. Africa; level of exercise suggested at this time and what other tests to run. I want to see if my family can do more to help. Significant family hx of strokes leading to paralysis and death from paternal side of family. TYSM. Last picture is his latest EKG from April.
I would appreciate some opinions from you Cardiac pros on my brother please(I know you can’t officially diagnose patients that are not in your care, no worries). 35/M living in a W. African country . 6’2ish and about 280lbs. Mostly sedentary lifestyle up to January 2026, when good wife has to rush him to the hospital for dyspnea, chest pain and SOB. BP was in the 230s/110s. 5 days in the ICU to stabilize his BP, runs some labs and some cardiac tests later, he was discharged.
Cr 1.3, K (3.1). Tn-I was 0.74 ng/ml (normal range there is 0-0.3ng/ml). No hyperlipedemia labs were run, but as you read below, they also put him on statins (yes, I told him to avoid grapefruit).
I have attached his EKG from 9/1/26 (meaning January 9th; French is one of our languages), and another from April 16, 2026 when I went to visit and attended a cardiac appointment with him. Also attached is his first ever echo during the ICU admission. He now has an at-home electronic BP machine and pulse ox and I have encouraged him to keep a weekly log when he’s going to see his cardiologist.
He is currently on Cardio Aspirin 81mg, Physiotens 0.4mg, Nebivolol (down to half a pill from February dose), amlodipine 10mg and artovastatin. BP now 154/80. He has lost 8lbs walking daily and lifting 10lb weights (nervous about strenuous exercise on his heart). We’re getting him a gym membership.
He will be redoing labs in June, along with whatever other cardiac tests are deemed needed based on recommendations from you guys (his MD wants another EKG, but since we’re paying out of pocket 100%, he can run other tests if we ask for it).
I got diagnosed with Apical HCM back in summer of 2024. My symptoms were basically non-existent, but a period of palpitations that stopped on their own after a few weeks was enough to send me to my GP's office and get an EKG. That set off getting diagnosed with a 17mm thick septal wall. But, because I had no symptoms and no real risks after an MRI and stress echo, we just decided to monitor it.
I started an exercise routine in summer 2025 because I had the urge to get healthier after my father passed at the age of 82 (not heart related), and I was turning 40 soon, so I wanted to start making some changes. I realized, for the first time really, that my being lightheaded after intense exercise wasn't normal. (I've wondered why people enjoy exercise my entire life because I always felt awful after.) I got referred to a specialist, had another MRI with contrast this time, and another echo and stress echo. That was last week, and since then I've learned that my heart wall has grown to 27mm and my "gradient" (I still don't totally understand what this is) under stress was up to 90 now (it was just on the high edge of normal before). My doctor is trying get the insurance company to approve a loop monitor (I only had one very short and low intensity V-tach with my last Zio 2-week patch), and their office has ordered a Camzyos prescription. After jumping through the insurance SaveOn program, the co-pay assistance program, and registering for REMS hoops, the order is being processed and I'm awaiting a call from the insurer to discuss it.
Unsurprisingly, I'm a little nervous about starting it. This is my first medication that feels this intense. Any experiences, insights, words of encouragement, or really any conversation at all is appreciated. It's been a thing I've known about for a couple years now, but it suddenly seems a lot more real and unnerving. Thanks to anyone that read this far and takes an interest!
For those who have experience cardiac arrest, did you see/experience anything when the lights went out? Just curious.
I’m only 40 and due to low EF (35%) and LBBB- am getting a CRT. I also have HCM and feeling like my heart will steadily decline and will be on a transplant list in 10 years. I’ve had a myectomy and on my third ICD. Cardiac arrest 7 years ago. My dad died of cardiac arrest at 55. I’m terrified. I have two toddlers and cannot leave my babies. Looking for any good news or hope as I feel I have an expiration date.
Today I was told that I'll probably have to get surgery a really invasive surgery for personal reasons, but as far as I know it's dangerous to get general anesthesia while having hcm, so my family is really scared (and I'm also scared) and i'm getting really anxious thinking about it, should I be scared? I'm only 21 and this makes me feel like my life could end soon :(
(Sorry for my bad english)
Has anyone gotten a CRT-D due to low EF and still went ahead and had a successful pregnancy?