Defibrillator turned off

After several "inappropriate shocks" over the past several months - the two most recent ones while driving! - I am over the whole defibrillator experience.  I have had multiple issues with mutliple devices over the past 12 years.  Amazingly enough - almost despite the devices my EF has improved greatly - to the almost low normal range.  Now the anxiety about yet another inappropriate shock is a far greater issue than anything going on cardiac wise.  Just wondering if anyone has had it done?  



by BarbD - 2019-03-01 20:44:56

Did they tell you why you were shocked inappropriately? That must have been a horrible experience.  Its great though that your EF has improved. Is your device a CRT-D or a regualar ICD?

Defibrillator turned off

by ZeldaMSW - 2019-03-02 11:11:40

Mine is a CRT-D - which is what helped improve the EF so much.  

The defibrillator fired because my pulse was over 200 - but it wasn't a life-threatening arrhythmia - which is when it is supposed to fire.  That has only happened once. 11 years ago - and the device fired as it should have -  7 times since then - not an arrhythmia - ( once a broken lead,  twice when a tech was messing with a newly implanted malfunctioning device that needed immediate removal - and four times in 7 months for a rapid pulse).  I'm traumatized by the firing.  Every time they "adjust" it to make it less likely to fire -  it fires again even sooner.....

Fear of (defibrillator) failure

by Gotrhythm - 2019-03-02 17:52:15

The CRT function of your device-- which could be responsible for the improvement in ejection fraction--can function independantly of the defibrillator.

I don't have a defibrillator, but it seems to me that there wouldn't be much difference between the fear of it going off when I didn't need it, and the fear that it would malfunction when I did need it. 

Any way, the defibrillator can be turned off and the CRT allowed to keep working. Sometimes just knowing you have a choice helps.


by ZeldaMSW - 2019-03-02 19:48:32

The fear of it failing to fired if I needed it - hasn't been an issue for me -  the fear of it firing - especially since it fired (twice in a row)  while I was driving -  is HUGE.  -  If the doctor was saying these shocks were appropriate I wouldn't even consider asking for it to be turned off.  -  I have looked online a lot for information about this and only find stuff about turning them off when people are nearing end of life - yet  there is a fair amount of information about people being traumatized from the shocks (whether appropriate or not) - and about people reporting a decline in quality of life - due to the device and the anxiety related to it firing -  so I was wondering how often people who are traumatized (or merely exhausted from it all )  just decide to have the defibrillator turned off.  Would be curious to hear from others who've struggled with (and made?) this decision.  Thanks

That's Scary

by Jmiller - 2019-03-03 11:51:14

I have had an ICD since 2013, just had mine replaced.   Seven months after the first one was installed in went off probably saving my life.   In that case I was out and didn't feel the shock.  Happened again 2 weeks later and again didn't feel it.   I've been asked many times what it felt like by both friends and my doctors.   I hear it isn't fun if it is inappropriate.   What brand of pacemaker do you have and why did they install one?   I have cardiac Sarcoid and have complete heart block.   Also have a 40-45% ejection fraction.  My ICD is a St. Jude.   Sorry to hear your going through this.   It does sound like your heart races off at times but the device isn't about to destingish harmful and non harmful arryhythmias. 

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