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
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.