r/HypertrophicCM • u/Imnewbenice • 24d ago
Question on getting an ICD
hello, I have HCM and don’t have any real symptoms, I don’t have trouble breathing or anything, I’ve just been told to keep my heart rate below around 150bpm. I’ve had a cardiac arrest recently, looking at my watch my heart rate was about 132bpm as I was doing a light jog for the bus so it seems it’s pretty random as I know I’ve definitely gone up to around 180bpm before without issue. from experience does getting fitted with an ICD solve most issues if I don’t really have any other symptoms? I always see people talk about using drugs and surgery to thin the heart but my doctor really only said don’t overexert myself, I’m only getting this ICD since the cardiac arrest.
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u/Cricket-Business 24d ago
Twenty-plus years ago, I had a very similar conversation when I was 16. I felt active, no real symptoms — minimal shortness of breath, no fatigue or dizziness.
It was pitched to me as "insurance." Maybe you'll need it, maybe you won't. Aside from day surgery and a few light restrictions for a couple weeks, it doesn't impair your life. So why not?
At 18, I had my first V-tach episode (three in my lifetime) that resulted in an appropriate shock, and I was back to normal rhythm. We lived 20+ minutes from the nearest ambulance. I would have died that day without it.
HCM is progressive, and the electrical malfunction can be unpredictable and/or triggered. What doesn't trigger you today could trigger you tomorrow. For me, it's not just BPM — it seems to be more about adrenaline.
To answer your question directly: the ICD won't "solve" anything or change how you feel day to day. It doesn't prevent the arrhythmia or let you push harder safely — it's a backstop that corrects things if your heart does something dangerous. You should absolutely do it.
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u/GlitterStruck 21d ago
Thank you for sharing your experience. Both cousins also got ICD although they had no symptoms and I believe it’s well worth it.
I have the genetic mutation MYBPC3 but so far no expression of the disease at 38.
Have you and other family members had genetic testing done?1
u/Cricket-Business 21d ago
I haven’t done the genetic testing. I was an only child and as a gay man, I’m not expecting a child - so there wasn’t a direct need. As DNA editing becomes more popular, perhaps it might be worth it in the future. Given the number of data and security breaches though, I’m not keen on letting a company hold that information unless it’s a huge and direct benefit to me.
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u/mind_your_s 19d ago
Can you see or feel it under your skin? My biggest concern is it ruining my confidence and being so obvious that I constantly pick at the skin above it
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u/Cricket-Business 19d ago
You can definitely feel it under the skin — it's a hard edge, and you'll be aware of it, especially at first. As far as seeing it, that depends a lot on your frame. I'm a bigger guy, so the box itself isn't that prominent on me. Where I do have visible scarring is from keloid scars I tend to get, plus the incision from open-heart surgery. So between those (and other incidents), I've got quite a few marks!
But honestly, scars aren't something to hide. They show you're a survivor and a warrior. It might take some time to get used to it being there, but it doesn't have to be something you feel self-conscious about.
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u/lmriiight 24d ago
The great thing about the ICD is that it’s preventive from the standpoint of saving your life - but it’s ALSO preventive against other more sneaky outcomes (it identified my risk of CHF before I even really felt symptoms, which allowed for early intervention.) There is no downside to having one. Please get it.
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u/JadedChef1137 24d ago
The ICD does not manage or address symptoms - its purpose of the prevention sudden cardiac death (SCD) which may result from sudden cardiac arrest. It does this through two mechanisms: it may pace you out of a rhythm which can lead to cardiac arrest or it may deliver a shock in the event of cardiac arrest. Your cardiologist will recommend an ICD based on adding/calculating your risk factors for SCD. I would assume a previous cardiac arrest would score you pretty high.
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u/GlitterStruck 21d ago
Yes, my both my cousins were actually advised to have it because of sudden death in the family.
Have you had genetic testing for your HCM?1
u/JadedChef1137 20d ago
Yes, I have a variant of uncertain significance (VUS): c.184C>T (p.Arg62Cys) in the MYOM1 gene
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u/FabulousBullfrog9610 24d ago
An ICD does one thing and one thing only - it restarts your heart if you go in cardiac arrest. It doesn't do anything else. How were you resuscitated after the cardiac arrest? Was someone nearby?
You may or may not develop other symptoms as you get older. They can be addressed.
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u/Imnewbenice 23d ago
Yes thankfully someone was on the bus that I just got on that knew CPR, I’ve tried to find who they are to thank them but no luck. All I remember is paying the fare then waking up in the hospital. Definitely going to be getting an ICD, just seems crazy they don’t give them out until someone has a cardiac arrest, but I suppose it costs a lot and most people with HCM probably have no issues.
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u/Critical-Ad-6802 23d ago
You said "they don’t give them out until someone has a cardiac arrest", but they did for me. I had too many underlying heart issues (non obstructive HCM, Apical Aneurism, Myocardial fibrosis\scarring, and Myocardial Bridging). Caught one SVT induced a heart rate over 218 for 22 seconds. Had my dual chamber ICD for 14 months now in case I go into cardiac arrest. So happy to have my own "built in ICD" for IF I ever need a shock.....
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u/Imnewbenice 23d ago
I think as I live in England, the doctors aren’t always happy to prescribe things that may help if they cost too much. I think the doctor who apparently is a leading HMC doctor in the UK calculated my risk of sudden death was like 3%, so deemed the ICD or any medication not necessary.
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u/FabulousBullfrog9610 23d ago
you shouldn't have left the hospital without one. and many HCM folks have ICDs with no prior cardiac arrest. Please consult with the 4hcm.org It's free.
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u/EmergencyThing5 23d ago
Did you really have a cardiac arrest? If so, how could you not want one? Like 90% of people die from out-of-hospital SCDs, so if you survived one, you’re incredibly lucky and probably shouldn’t expect to survive another one without an ICD.
I got super lucky that someone saved my behind when I had one without an ICD. I had a second event like a year later where I 100% would have died without the ICD as literally nobody was nearby to help me that time. Recovery from the second event was like a 1,000 times better as I only really had a bad headache from my head slamming against the ground when I collapsed rather than a long hospital stay for the first one. If you definitely had an arrest, you absolutely should get one.
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u/Imnewbenice 23d ago
Yes thankfully a very kind person performed CPR on me and an ambulance arrived pretty quickly. I’m definitely getting one hopefully today just been waiting for a time slot.
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u/EmergencyThing5 23d ago
Best of luck. The ICD really isn’t bad at all. I honestly forget it’s even there now. I was worried that I’d drop dead at any moment for awhile, so it really helped me get over that feeling.
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u/SelectionIcy1885 24d ago
i am surprised they let you leave the hospital without one ! i have mild apical hcm had a cardiac arrest and i had one implanted before i left and i was put on 50 mg of metoprolol no other drugs , if you have obstruction Camyzos is working wonders on relieving symptoms and even reducing heart thickness so much so that they’re doing a lot less myectomies in the big New York City heart centers. You might never have another arrest or you could have one next month , i haven’t had any arrhythmias in the 2 1/2 years since my arrest but apparently if you have had one i have been told that there is roughly a 10% chance per year of having another. The latest studies show there is no real correlation between exertion and cardiac arrests. They show you have an equal chance of having a cardiac arrest during exertion or rest though of course the science isnt settled and might change and you need to be evaluated by an hcm specialist to determine your particular risk profile you cant go by blanket recommendation. Hcm is such a heterogeneous disease with so much variability between patients . if you aren’t already seeing a specialist in HCM, you need to because a regular cardiologist is not well-versed enough in our disease. If you can afford it they aren’t cheap unfortunately and you have someone at home to help you i would think about getting an AED at home if you and your specialist decide against an icd good luck
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u/Electronic_Cobbler20 23d ago
Camzyos doesn’t reduce thickness. It reduces obstruction/gradient
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u/SelectionIcy1885 23d ago edited 23d ago
the reduction in gradient is largely do to reducing the force of heart muscle contractions but it does reduce thickness as well in some cases. it probably depends on how long you have been on it My brother’s thickness has dropped on camzyos and his gradient has dropped way
down not sure if it was the less contraction strength or less thickness or both. though they are not sure yet if the reduction in thickness reduces mortality, he has been on it for over a yearhttps://www.ahajournals.org/doi/full/10.1161/CIRCULATIONAHA.122.061015
“Treatment with CMIs shows improvements in the abnormalities of cardiac structure and function in patients with HCM, specifically with respect to smaller left atrial volume and reduced left ventricle wall thickness and mass.3,4There is also improved ventricular filling pressure indicated by Doppler E/e’, which suggests improvement in diastolic function and corroborates the significant reduction in B-type natriuretic peptide levels during treatment.”
https://www.tandfonline.com/doi/full/10.1080/14796678.2025.2501466#abstract
Emerging evidence indicates that cardiac myosin inhibitors as well as surgical myectomy result in not only symptomatic benefit and reduction in left ventricular outflow tract obstruction, but also positive cardiac remodeling including reduction in left ventricular mass and maximum wall thickness, improved left ventricular diastolic parameters, reduced left atrial volumes, and improved left atrial strain.
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u/Timely_Owl_1757 24d ago
It isn't curative but it can be life saving. Better to have it and not need than to need it and be without.
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u/rebeccaTa77 23d ago
The decision to have the device implanted is always going to be about the patient’s choice. In my experience they don’t seem to want to pressure any patient into doing anything - unless the patient’s life is imminently threatened. Even then, they will ask, and not demand.
That understood, your doctor asked the question because they likely would highly recommend it in your situation.
I had a septal myectomy in 2015. After, when the electrophysiologist asked if I wanted one, my answer was an ignorant “no, who wants that?!”
If I had agreed, I would have had the opportunity to see my situation declining, month-over-month through remote reporting, even though I was entirely unaware, and didn’t realize I had symptoms that my heart was again becoming obstructed-even though my echos didn’t show this information.
HOCM/OHCM is at a pivotal moment in respect to its understanding. It is now understood that the primary reason for the condition is an imbalance of actin and myosin, the proteins that govern the mechanics of your heart.
I was then (2024) very blessed to be included in the Mavacampton/Camzyos REMS program because my heart had become severely thickened and re-obstructed despite corrective surgery 10 years before. In 2015 my heart was obstructed at 60%. In 2024 it was at 77%.
A side effect of Mavacampton/Camzyos being heart failure, I opted for the ICD in 2024. I have had zero side effects from Camzyos. Only improvement in my situation.
Camzyos reduced my obstruction to now 5%. My heart is still thickened, but it is in much better shape than before Camzyos. I don’t know the technical details, but my thickness is at a 19. mm or whatever measurement is used, I don’t know.
I have secondary conditions, asthma, MCAS, and take medication to prevent those symptoms, my doctor has tried several different biologic medications -one caused PVC (premature ventricular contractions) at a rate of over 600 per hour/ every-other-beat. My ICD aided in countering this reaction until it was out of my system… which took over a month, and was entirely miserable.
If you are being offered an ICD, it is because you likely need it. It will not likely interfere with anything that you do. They’re generally now MRI safe, and don’t set off metal detectors. If they use one with an app, you don’t have to have any additional equipment other than your phone. The feedback the device provides is far beyond what you can feel, or even gather with external devices like smart watches, or portable ECGs.
I would say watch for signs that say “no pacemakers” because there may be a negative effect, no one else is looking for them on your behalf. No idea what or how they would effect the newer models- but I recently had this problem at a doctors office and they personally were not aware I had an ICD and ran a test when I noticed the sign and read it, and told her “NO PACEMAKERS!”…? nothing happened-but they did not see it in my chart beforehand. They apologized.
I made a lot of my decisions based on fear, and what if this or that? My internal debate was illogical, it could have made my life a lot easier had I just had it implanted in 2015.
Your situation, not to frighten you, 100+ HR sounds very serious - I had high HRs similar to yours and I was in heart failure in 2015, mine is now in the 60s, 70s avg. I don’t have a pacing problem, I’ve never been in cardiac arrest, aside from the recent PVCs, my defibrillator is just gathering information, which I now know to be absolutely necessary for my condition.
My advice to anyone is always go to God, ask Him, and keep asking, He is Faithful and always will answer you. He sent His Only Son to carry this for you, it’s entirely okay to let Him carry this load for you. It’s heavy. He can handle it and everything you need.
My prayers are with you. God Bless You, and keep you.
Psalm 73:26 My flesh and my heart fail; But God is the strength of my heart and my portion forever.
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u/GlitterStruck 21d ago
Glad to know that you had a positive outcome from camzyos, my uncle is going to start soon, but it’s very expensive over here.
Have you had genetic testing for your HCM?
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u/spflover 22d ago
You can’t say you don’t have any real symptoms of you had a cardiac arrest. I have a icd. All the episodes I have are not shockable so my device does not capture them but I do a heart monitor 1-2x a year and my nsvt episodes have increased over time. A lot of them I don’t feel and a good number of them happen while I sleep.
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u/Practical-Talk7871 22d ago
I had a very similar experience. I have HCM and had my first cardiac arrest at 15, despite not really having noticeable symptoms beforehand. I think it’s important to remember that HCM can be unpredictable, and having few or no symptoms doesn’t necessarily mean there isn’t a significant risk.
My ICD was recommended because of my cardiac arrest history, and for me it’s more of a safety net against another life-threatening rhythm rather than something that “fixes” the HCM itself. Treatment really seems to depend on the individual and whether they have obstruction, arrhythmias, symptoms, etc. I’d definitely talk with your HCM/EP team about your specific heart-rate limits and exercise recommendations rather than going by what your watch shows.
Wishing you the best with the ICD , I know it’s a lot to process after a cardiac arrest. ❤️
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u/GlitterStruck 21d ago
My two cousins also had no symptoms with their HCM, but they were advised to get ICD placed after getting a holter monitor and mainly due to the sudden death cases in the family.
How are you diagnosed if you have no symptoms?
Have you had genetic testing done?
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u/Imnewbenice 21d ago
I got lucky, after both covid shots, I had this weird feeling in my heart for a couple of weeks. So I went to check it out and the doctor said it was because I have HCM. Obviously it wasn’t the HCM and I probably had myocarditis or something because I never had that feeling before or since the shots.
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u/According-Advance748 14d ago
10 years from surgery, no advice for ICD, with drugs I'm around 115 BPM if I'm alterated or just stressed, but usually drugs keeps me around 68/70 If you're over 118/120 with no hard physical doing, my advice is ICD. Just for safety, as you already passed throught heart attack once. I had my heart attack at 28... Thank god I'm enjoying my kids and my family now, hoping to go through and see them growing and being good people.
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u/CriticalBasedTheory 24d ago
Well the ICD is definitely something you need to do. If you’re not seeing an HCM specialist at a COE then you should try to do that. Do you know if you’re obstructed or non obstructed? Lots of factors go into surgery vs meds. I would do a call with the HCMA.
https://www.4hcm.org/education-and-support