What’s it like having an ICD? I don’t want to do it.

@krb48
That's an awful situation to be in but who knows when you may need the assist of the device. I would be hesitant too if I wasn't symptomatic. I have Epilepsy and haven't had a seizure in 5 years but who knows if or when I might without medication. It's that what if factor. I’m curious what others have done who are much more knowledgeable in this condition than I. What does your physician say? I think I'd get a second opinion too.
Best of luck,
Jake

Hello @krb48, and Welcome to Mayo Connect. I'm glad you found this site and hope you are able to learn more about HCM and HOCM (Hypertrophic Obstructive Cardiomyopathy). There are some members here who have HCM/HOCM and do not need an ICD, and then there are others who do need the ICD.
@irishpeaks, for instance is a card carrying member of the ICD Club, and his experience is interesting. Have you read any of his posts?
I have HCM. I had HOCM until I had open heart surgery at Mayo three years ago. I was evaluated for an ICD after surgery and I can tell you I panicked. I was not happy at the thought either...just like you.
I understand why your brothers want you to have one if you need it. But the thing is, it's not them getting that device implanted in their body, so it's easy to say 'just do it' because it's not happening to them. But they obviously care about you, and for that reason they want you to be around. You're only 75. That's young still!
Only you can decide what's best for you, but consider all the options and alternatives as well when making your decision. An ICD is there to save your life, but there is certainly the risk the device may fire...because you need it, and that can be sudden, without warning and freak you out!
You mention you were just diagnosed with HCM and were shocked at your EF. That must have come as a big surprise to you, and then to be told you need an ICD...no wonder you are nervous. You have a lot to process, and I hope that you can learn as much as you can about HCM. That is your best strategy, so you can be an informed patient and your own best advocate.
Here is a link from Mayo about HCM that you may find interesting.
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
Is your cardiologist experienced in treating HCM? That is very important. Have you considered a second opinion?

I’ve been busy as of late and haven’t had much time to post, my apologies.
This situation is definitely a tough one. I won’t try to sway you either way but I can share my experience.
I’m 45 and have hereditary non-ischemic cardiomyopathy with a full block. This killed my dad at 31 and my older brother was at the Mayo Clinic getting a heart transplant when my situation arose. I went into VT on too many occasions before I felt “bad enough” to go in. I’m a bit embarrassed that I didn’t go in sooner, thankfully it worked out. My EF at the time was 36% which is what they considered borderline for an ICD and gave me the option. I was going to need a pacemaker regardless, as my resting heart rate would fall into the upper 20’s, so I was getting a device anyways. I decided to go with it and have both regretted and been thankful for it. The regret certainly comes from the physical side of it when you get shocked as well as the mental aspect of it afterwards. It’s not pleasant and is unpredictable. Will certainly cause changes in your life. I hated it so much, that I wanted it turned off and became somewhat unbearable until I realized what was really at stake. To me, the battle will almost always be worth fighting for not only myself, but my loved ones as well.
No one knows a person’s situation better than themselves, make sure to use that knowledge and make the best decision for your situation.
Hopefully some of this will give you something to think about.
I’m on break at work and better get back to it. Good luck!

I've had HOCM for the past 2 1/2 years. I had a sudden cardiac arrest and was diagnosed with HOCM. I have had alcohol septal ablation and I am a borderline candidate for a pacemaker/defibrillator. I have had 2 different ICD's put in and then removed. No big deal at all. If you need it then have it done. When it comes to my heart, I'm not reluctant to have such a simple surgery.

I like to play polo, and sometimes I fall off my horse. What if I land on it?
Also, at my age, sudden death from an arrhythmia would a good way to go - no lingering in a nursing home.

If I were 45, I would do it.
My 85 yo brother has one and says it’s no big deal. My 89 yo brother did not inherit the gene mutation by he does not want me to die before he does and says he plans to live forever. My brother’s 20 yo grandson who had a sudden death episode in gym glass when he was 15 and was resuscitated HATES his. His mother refuses to get one. I wish I’d never been tested.

Thanks, Jake. My son’s name is Jake. Fortunately, he does NOT have the gene mutation for HCM.

It is hard to decide to get one if there are no symptoms. Decide with your doctor. About 2 weeks after a septal myectomy in July 2022 at Mayo, I began developing dizziness, often with vertigo. Complained loudly, but no one could figure it out. Had a syncope in mid October, 2022, wore a heart monitor for a month and had another syncope in late November. Received a pacemaker/defibrillator early December, fine ever since. It would have saved me much grief and 3 hospitalizations had I had one much sooner. My cardiologist said that we had to follow protocol. I was 76 at the time, it's just there and gets checked every 6 months.

@krb48 Let me comment on getting a ICD. My EP stated it is like having your own EMS in your chest. Whenever the need to treat a heart rypthm problem your ICD is there to treat you. Most will try to pace you out of the problem and if still needed with shock you.

Your 35 EF is not horrible. Mine is 20. So how bad is 20? I do Sprint Triathons and train for them 6 days a week. I have had many shocks since getting (on my third ICD/Pacemaker) and have started to see it as a blessing having the device in me to bring back my heart so quickly. My EP and heart failure doctors work very closely together (Mayo) to fine tune my ICD/Pacemaker and get the right doses of medications bests for me. We have also added supplements like Magnesium, co-Q-10.

I was told by cardiologist and EP that 30 EF was the threshold for getting a ICD. I hope you have been prescribed medication to help stop your heart failure from getting worse. I am on Entresto and Carvididol. My EF was getting worse every year until put on both these medications. I and cardiololgist hate the word heart failure. It is a terrible name for a heart condition that only means less heart function below the norm. I think reduced heart function is a better term. By the way I have had that condition since 2001.

Stay active. 30 years ago they would have told you to go home and rest. Now they say exercise to keep your heart and cardiovascular system strong. I have been an exerciser all my life. Now have recommended exercise please check with your cardiologist to see what is right amount for you.

It does take some time to adapt to getting a ICD (I have ICD/Pacemaker) and on my third one. But after a while you will not even know it is there unless you need it. And then your peace of mind is there as you have your own person EMS tech in your chest in case is needed other than waiting for EMS to arrive which can be pretty long. Your ICD will monitor your heart rympthm 24/7.

Good luck but do not hesitate getting the ICD it will much more or a positive than a negative for you quality of life and lessoning your anxiety.

Thanks