HEART DISEASE
COMMUNITY
turn off defibrillator
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by paradiseeve, Jan 27, 2008
I got shocked 8 times in a row from my defibrillator and after that found out my hear tmuscle was damaged. They say a virus hit it but it was fine before the shocks. I only had a irregular heartbeat. This was my second defibrillator. The first one did fine for 5 years and shocked me near the end of 5 years when the battery got low. This second one had been implanted two months or so earlier. I told the woman who checks it on the computer that when I lay on left side it thumps more, so she adjusted the pace. Right after that I got the 8 shocks. Anyway, my question is this: How do I just force them to turn it off and let me live as long as God allows. It grows into your heart(the leads) so I would be afraid to ever try to remove it, just turn it off. Can I legally have it turned off?
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by ireneo, Jan 27, 2008
My Dad had an ICD for years (he has heart failure). Over a year ago he was getting multiple shocks each week. They made adjustments to the unit but he still got shocks. It was just a matter of his heart getting weaker and less stable. They tried to adjust his medications but he was resistant to the idea and kept going off them. The day he finally fell face first onto the hospital parking lot, he finally gave in. He's been on the new med for over a year now with no more episodes. Amazing to us since we thought he wouldn't last 2 months. Just an example that it can be managed.

They could turn it off or just remove the ICD, not the leads. I don't know about the legal side of it - how much you can demand. I think there may still be some options for you other than turn it off and let you die. That's pretty hopeless. Don't give up hope yet. My Dad was willing to give up but gave it one more shot. It was worth it.
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by Sirenet, Jan 31, 2008
Hello and I am so sorry to hear of your condition and discomfort. But hang in there !! If you don't mind my asking your age?  Surely there is much more for you to enjoy in life !
   This is all very new to me, so please excuse my ignorance. I recently learned that I also need an ICD. Evidently my heart is very damaged also. I am trying to learn so I can make a somewhat educated decision. Of course the DR's just want to put it in, like yesterday.
   Was there a while that you were happy with your decision to have it put in, and that it helped. It seems that I have many heart problems from the heart damage, but I am still uncertain if the ICD is for the arrhythmia problems or the hypokenesis. Also did having the device place many restrictions on your everyday life ( for instance limit you from certain activities)
  I am amazed at how reluctant EP dr is about giving info. I had to force it out of him as to whether the device would be permanent or reversable ( he reluctantly addressed my questions of leads embedding themselves into heart muscle, etc)

I thank you and wish you well. I hope that you have begun to enjoy more comfort... -Steve