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?  

5 Comments

Why?

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.

Fears....

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. 

You know you're wired when...

Your ICD has a better memory than you.

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