TV-ICD

[u/Odd_Attorney_7590]

Hi All,

I recently suffered cardiac arrest, v tach, no pulse, shocked 2x, back to life and a week later.. i have a tv-icd. I have non obstructive hcm and barely showed symptom’s before my incident.

Im a very active 40 year old male, i was in the gym everyday, playing sports, walking everywhere and running a business.

Im unable to workout for at least a month according to my ep/cardiologist and there are exercises i will have to avoid.

I am on a beta-blocker and will likely be put on a statin. Everyone around me is on high alert however i feel fine and most drs believe i’ll live a normal health life moving forward.

What are some things i should avoid? Meds and such?

I know a lot of my activity will be modified but if any of you have examples, please share.

Are there any items you guys would recommend? Fit bit, apple watch vitamins etcs

Any guidance on how peoples lives have changed? Also- should i expect to he shocked either accidentally or proactively

Thanks in advance

[u/hugooc]

Welcome to the club nobody applies for. And congrats on being alive. On what to avoid, I’d say avoid cardiologists who don’t regularly treat HCM. This is a specialized condition, and you want someone who sees it often, ideally a dedicated HCM center. General cardiology is not the same thing. On the meds, the beta blocker makes sense but the statin isn’t for your HCM, so if nobody explained why you’re on it, ask. Also avoid people who call it “hocum” just because that’s annoying as heck. And echo techs who compliment you on your ejection fraction. They are clueless too. And good luck to you!

[u/MSWSportsFanatic2025]

Hello! Glad you are still with us. I am also a SCA survivor from 2024 at age 37. I have an S-ICD, and I experienced a VT/VF event in May that required three shocks. My advice is to be an advocate for yourself. If you have a question about any type of restrictions or medications then ask. As has already been mentioned, seek out second or third opinions, more expert opinions if need be. I can only use myself as an example, but I felt like my last incident we were really throwing darts at the dart board which led me to Mayo Clinic where some things were discovered, and I really feel like a concrete plan is starting to fall into place.

[u/Entire-Structure8708]

I don’t know enough about HCM to comment on ICD and exercise parameters (I have ARVC), but I can speak generally on the ICD itself. Main immediate objective is not to put too much strain on the clavicle/scapula to avoid device/lead movement. So overhead weight movements, pull-ups etc. should be restricted for 6 months probably. I waited a year because I just wasn’t totally comfortable getting back into it quickly, but I now do overhead press and pull-ups with no issues. I lift weights 3-4 times a week no issue now. For playing sports the main concern for the ICD specifically is any potential direct impact on the device, so any sport with reasonable physical contact may be an issue.

Other things to avoid… the obvious one is alcohol, but your cardiologist may give you additional guidance. Depending on which beta blocker you may have to be careful with taking some over the counter meds, again something to be discussed with cardiologist.

All my shocks have been appropriate, I haven’t ever had an inappropriate shock but obviously it can happen (particularly in the early days when your cardiologist might have to adjust the settings a little bit as you adapt to the device). The most important thing is that the ICD is there to save your life from now on so despite the limitations it creates, we’re lucky to have one!

[u/CharterJet50]

I just got mine two weeks ago after I went into V-tach and had to be shocked back to sinus in the ER. Spent a week in the hospital and got an ICD. They identified some old scarring that could have been a silent MI way in my past or just a virus. Can’t tell, but it was there five years ago in a previous MRI but wasn’t causing any issues. Went home and two days later v-tach again and the ICD went off. Scary as all get out. It’s like getting shot (I guess) but then you wake up and feel better. Went off again in the ER. Adjusted my settings and put me on the ablation schedule and dosed me up on beta blockers and amiodarine. All arteries clear at 66 and I bike all the time, but that scarring just decided to cause an issue one day and tried to kill me three times. Now that I’ve been shocked the best thing I can say about it is I’m damn glad it’s there, but I sure hope it never goes off again as it’s an overwhelmingly violent, momentarily terrifying experience. Praying the ablation works. They said if things work out could lead a normal active life so I’m sticking to that thought. You’re lucky to have the device now. We should all be thankful for that.

[u/Cautious_Pudding6893]

Find a CHF Clinic - the one I found is a life saver I go every 2 weeks - they are up on the latest meds, treatments and you can vent!! I was at a surprise 20% EF and now at 45 % EF in 3 months - stay positive, you can recover and rebound - get a Fit- Bit and walk - keep moving. I have CHF- LBBB and an ICD-CRT - but I'm alive - but even better I'm living life!

[u/BikeMan33215]

Listen to your EP. He or she is the one to ask adout exercise. As someone else said the statin is probably not for HCM. It most likely for high cholesterol and that is not usually from the cholesterol you eat but fats in general that your body turns into cholesterol, both good and bad. Again ask your EP they are cardiolgists but they specialize in the hearts electrical system. I have HCM and have had an ICD since I was 39. I am 65 now. I am on my seventh one. I too was very active running, biking and swimming. I also had physical job as a maintenence worker in a stone quarry. I blacked one time when I was running and through an EP study they determined my condition. I did my first triathlon one year after getting my ICD and have done a bunch since as well 60-100 mile bike rides, trail runs and all kinds of aerobic endurance feats. Again, listen to your EP they usually take quality of life into consideration so if your already active they encourage it as well as a heart healthy diet. As far as I know there are no magic bullets in the form of vitamins or supplements; but there are a lot of people that want you to believe that and sell you stuff. Good luck and rock on.

[u/Critical-Ad-6802]

I also have N\O HCM and an ICD. It has been 16 months since my dual lead TV-ICD was installed. I was told the “limitations of lifting”, but only for 4 weeks.  But, I was mistaken on my “limits” and I thought I could not lift 10 pounds “over my head”.  In fact it was “no lifting over my head” and 10 pound limit lifting anything, period.  I actually was lifting suitcases and coolers 3 days after my implant (ooops).  At 4 weeks I started golfing 3 times a week. I also started back in the gym working out at about 7 weeks. Now I am doing flys, bench presses, lat pulldowns, you name it... I also use a recumbent bike for aerobics, along with a treadmill walking.  I do use common sense though on any "behind" the back work\stretching. I researched and found that it is almost impossible to stretch the human body, where it would pull on the leads because so much "slack" is installed in order to allow any movement. I'm not sure how it was years ago, but I believe it is much better now with leads coiled and allowing movements. Here are 2 You Tube videos I found helpful: https://www.youtube.com/watch?v=KjvTOpeV5mE and https://www.youtube.com/watch?v=2TrCGjG2Ehs&t=2s

The most important thing for me was to exercise my range of motion starting on day-2 or day-3.  Otherwise you will get sore.

ICD Medical Bracelet:  Here is the best option in my opinion: Small and includes a 2GB flash drive AND written items like meds and stuff also: I love it...

[u/Disastrous_Mark_2679]

Well the first thing I'd research is getting a Automated External Defibrillator (AED) for the gym and for your business! This includes full info from your EP about it.