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Having ICD turned off
I am new to the CLUB. this s my first posting. Im facing a difficult decision About 3 years ago I had an ICD storm. Device fired about 75-80 dimes in about an hour and a half. It was the worst day of my 62 year life. All firings were Inappropriate shocks. Since then I believe I have been really Spooked.. I can relive the sensation of the shocks with no problem. I have since had an Arterial Flutter Ablation. No Afib since then [surgery about 20 months ago], i'm seriously considering having the Big shock part of the ICD turned off. This is not a practical decision I know. But there are a number of things I wont do because of my fear of going through another Storm. Its a quality of life decision.. My cardiologist is against this and I understand his reasoning. however he has never experienced a single shock much less gone through multiple shocks.. Any thoughts or feedback would be really appreciated Thanks
5 Comments
Diagnosis?
by golden_snitch - 2014-07-10 03:07:07
Hi!
Why do you have the ICD? Was that just a prophylactic implant, because you are for some reason (heart failure, several heart attacks etc.) at higher risk of suffering a life-threatening arrhythmia? Or did you actually have life-threatening arrhythmia before?
If this implant was performed prophylactical, and you have had no arrhythmias so far, only inappropriate shocks, then I could understand very well that you want to have it switched off. Not sure, if that's possible, but I guess one could leave the anti-tachycardia-pacing (ATP) on, but switch off the real shocks. In some patients ATP alone can stop a ventricular tachycardia. I know a bunch of ICD patients, who have never received a shock; some just had a few episodes of ATP. And ATP is not painful. However, if you have had life-threatining arrhythmias and appropriate shocks that saved your life, then I can also understand why your cardio doesn't want to switch the shocking function off.
I totally go with your reasoning that it does not make sense to have the device when the fear of (inappropriate) shocks reduces your quality of life so much. Counseling and support groups might help, but with an episode of inappropriate shocks like you have had it, I think, I'd still be scared, too.
It's a difficult decision: Live a life in fear or live without the fear, but with the risk of a life threatening arrhythmia. When the implant was prophylactic and you have had no arrhythmias, if I were you, I'd consider having the shocking function switched off, too.
Inga
astroman
by astroman - 2014-07-11 06:07:34
Well I appreciate the well thought out responses. "How do you mend a broken heart" touched on one of my main fears.. Its having no control and the silence with no warning of shocks, and they kept on coming.. As it stands right now everything is in place for this for this to reoccur. I know medications have been adjusted and the ablation done.. I know this is all in my head but that day is still so vivid to me. I've let logic determine my actions since then, now its just instinct taking over. Hope that doesn't sound dramatic. Tom
PS Again thanks for your time and thoughts.. This forum is a great place to be!
alternative to turning it off
by georgeazarmitchell - 2014-07-16 11:07:39
I understand your feelings ,I have been shocked twice once in the electophysiologist's office upon my request so I'd know how it felt . so I know how a shock feels .I believe there is an alternative to your getting it turned off . let me explain ...just carry a magnet around with you in your right front pocket so it won't interfere with your device .and should you experience multiple unnecessary shocks just place the magnet over the device to temporarily turn it off until you can get to the dr's office to have it checked out .I carry one all the time just in case .the manufacturer of the device won't supply a magnet for you but you can ask your dr for one ,he may not want to give you one either .if not then just buy an rare earth magnet ,doesn't have to be a big one ,when placed on the device it will turn it off . when taken of it will function as it did before .it's an option .
earth magnet
by anniesu - 2014-09-02 11:09:37
I had some shocks that were not suppose to happen ...I thought about turning the defib off and the Dr did say I could have that done but i changed my mind and left it turned on.They adjusted my defib and it hasnt gone off since ....thats been a couple years ago...I too had an ablation .Not sure I really need the defib as at the time it was put in the dr actually ask if I wanted a defib also or not...so from that I would say
i really didnt need it...also georgeazarmitchell what is a earth magnet and where can I get one of them? I wouldnt mind to carry one If i would have had one before I wouldnt of had to
go thru what i did for no reason...thanks
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Member Quotes
I live an extremely normal life now and my device does NOT hinder me in any way.
I am still trying to handle being shocked, but....
by howdoyoumendabrokenheart - 2014-07-10 01:07:10
Hello,
I was shocked 7 times in March of this year. Not nearly as many as you have. Although I would have lost all sense of reality if I was shocked that many times, I am still having a hard time with it. But by no means would I have them shut it off. After all, it did it's job. Mine were sort of misfires as I had SVT's and that triggered it.
Those shocks are really an event to remember. The sounds, the inability to have any kind of control of the situation, the fear. I'm sure these are all natural responses to it.
I have begun to acknowledge that it is there for a good purpose and when and if it is needed it will work. It is better to have it and not need it than to need it and it not be there.
So I guess the point I'm trying to make is don't let this keep you from living. It is always going to be on your mind, somewhere in the back hopefully, but just do what you can do. I can understand what you mean and how you may feel. You can't just "get over it" but you can incorporate it and understand it and put it where it belongs.
I hope you find a way to shake the fear, it is hard I know, but don't let it dominate your days. Acknowledge it and let it be. Best of health to you.