Should I get an ICD?

I have known about my heart condition (hypertrophic cardiomyopathy) since I was born. I was told about two years ago that getting an ICD would be good for me to get. I decided then I didn't want to get it because of the life changes and fear of it miss firing. I was never told prior to that, that I would need one. I was told this by a new doctor. I changed doctors because of my age. I had my yearly doctor appointment and he informed me that my heart muscle had gotten thicker and is strongly suggesting I get the ICD. I have never passed out and don't have chest pains really the only reason he seems to be suggesting this is because of the thickness. I understand this is not a good thing but I am afraid that if I decide to get this and I don't really need this I am going to be wasting my time and money. I am very afraid of this thing going off. I have heard that when this goes off that it could make you pass out. If anyone could be specific on what experiences they have had when the ICD goes off. I am hoping this forum will help me make a decision.
Thanks

8 Comments

misfiring

by Tracey_E - 2014-08-17 10:08:09

Misfiring is rare, they're more likely to fire because (at the risk of being too blunt) you could die. Often you've already passed out when it fires. Best case would be you get it and never need it. It's there for insurance so I wouldn't consider that a waste of money, it's piece of mind. Get another opinion, make a list of questions before you go. It doesn't sound like there's a rush to do it asap. Take your time and do your homework so you feel good about the decision.

Not passing out yet is not a reason to wait! You want to prevent passing out, unless you happen to have a crystal ball to let you know when it will happen so you can be sure you're not driving, near stairs, etc. We've had more than one member in the hospital recovering from a car accident as well as surgery because the first time they passed out was behind the wheel.

And having these devices are not life changing in a negative way! I know it seems awful and scary at first but most of us heal and move on, forget it's there more often than not. There are very very few restrictions on us and most of us live full, active lives.

Last thought, be careful reading too many posts here. Keep in mind for every person with a rare complication who comes here looking for answers, there are thousands out there who healed easily and got on with their lives. The percentage of complications will seem significantly higher than it really is.

I 2nd the...

by Grateful Heart - 2014-08-18 12:08:41


2nd opinion. It sounds like you need it to feel comfortable with your decision. I got a 2nd opinion before my AICD was implanted because I thought they must be wrong LOL. Well, the 2nd EP confirmed it and I think it helped me accept the fact that I needed one.

I've had my device for over 5 years and the defibrillator has not fired (so far). Not looking forward to the day if it does but I realize if it does, it is to save my life. My opinion, you can't think about the "what ifs". You would drive yourself crazy just trying to cross the street...."what if"??

Some Doctors do not want to suggest a device because of your age but as you know, heart conditions do not know age boundaries. Your new Doc sounds on top of it. We are very fortunate to live in these times with all of the medical wonders such as our devices.

Grateful Heart

Just trying to get more info

by Cincygirl28 - 2014-08-19 07:08:15

Hi I want to say thanks for the responses. I know this is my decision and this site isn't here to make my decision for me. I know no one with this so I was just hoping to get some information and experiences people have had with these. I have an appointment tomorrow to talk more about it with my doctor. I was just hoping to get some idea of what it's like with it

Again thanks

Third for a second...

by Lurch - 2014-08-19 10:08:00

Get a second opinion if you are still concerned, but don't let the fear of a misfire make the decision for you.

Do you get a flu shot? Why? Is it to prevent you from getting sick? Well, an ICD may prevent you death!!!

I have had my device for a little over three months. The first month it was a little sore and I always knew it was there. Now, I hardly ever notice it! If it gives me a second (or more) chance I can easily put up for that first month (which really wasn't that bad).

Good luck and please check back and let us know how it is going.

Welcome Cincy!

by Bevof NC - 2014-08-19 10:08:18

Glad you reached out. I've done it many times here and always felt understood . Just want you to know that I have had 2 ICDs since 2006. Neither has ever shocked me. I had 2 sudden cardiac arrests before I got my first. I hope the ICD never shocks me but at least I know it's there to save my life if I should need it. My Dr and I joke that-- if it happens while I'm mowin' I can just jump back up and finish the yard. The Icd does not hinder me in any way . I do anything I want and am thankful I'm so healthy---I just have an electrical problem and carry the cure inside of me--my ICD. Best of luck, Bev of NC

Educating Yourself

by Grateful Heart - 2014-08-19 10:08:27


You're doing the right thing Cincy, more info is the key. I don't know anyone who has a PM either and I didn't know about this site until 2 years after my implant.

Good luck tomorrow with your Doctors appointment. Write down your questions to ask him so you don't forget.

Let us know how it goes.

Grateful Heart

same problem

by Olena - 2014-10-13 03:10:43

Hi, I have the same decision to make. I also have hypertrophic cardiomyopathy and doc did an EP study and told me to get an ICD. So I am looking into my options between ICD and S-ICD. So, what was your decision? Did you get one?

HCM

by Hamsquatch - 2015-02-26 02:02:08

I also have Hypertrophic Cardiomyopathy with 38% function in the lower left ventricle. Never had any health problems, never went to the doctor but also didn't take care of myself health wise. Wound up having a V-Tach of about 265 bpm and in hospital for 11 days, my HCM was un-diagnosed until Oct 2014 and I ended up getting an ICD as per cardiologist and multiple other doctors advice. Money was no an issue as OHIP covered everything and my cost after everything was a $45 ambulance bill.

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