REMOVAL OF ICD

[lenon]

I HAVE BEEN DIAGNOSED WITH ATRIAL FIB AND V-TACH ALONG WITH VENTRICULAR FIBRILATION. I ALSO HAVE CHF. WHAT ARE MY CHANCES OF SURVIVAL IF I HAVE MY ICD REMOVED?

[john132]

I just want it out and let God decide when my time is up. I asked my Doctor to get it out last week. He will not remove it. I told him his is playing God and how long I live is not up to him. I just want to die in peace and be left alone to do it. I'm going to try and have it taken out. If no one will do it, Then I guess I will have to try on my own. Damn shame when a man can't live they way he wants to. They put this in me now my life ***** and I don't want to live like this any more.

[Dennistoo]

I am not sure why you want the ICD removed.  jrbon is correct about your choices.  I have had a lead extraction (mandated by an  infection contracted when  the device was changed out due to battery life) and a new lead inserted on the right side.  The lead extraction is indeed a big deal.  While they likely will not to do open heart surgery to remove it, they will be prepared to  do  so  in case anything should go wrong in the normal extraction process.  In my case, the lead had been in for 11 years and due to it  being  very well-attached and scarred over it required over 6 hours  to  remove  the lead.  Surgeon's tools got  stuck and  he spent a lot  of time working  them  loose so he could proceed.  

Unless you really, really, don't like the bump on your chest, I  would opt to just have them  turn it off.  That  requires no  surgery and is the  safest thing  unless you are subjecting  the ICD to abuse, (like shooting).  In that case  just  remove the ICD.  Removing the leads is  risky  and  if  there is no  infection, there  is  no reason  I  know of to remove them.

I have been shocked many times, about once  per year since 1997 on average,  except for one "11 shocks in an hour" episode due to  SVTs that  should  not have been treated.  That episode was no  fun, most of the  other shocks  came  with warning since I  first felt the "dizziness" due to V-tach  and  the device trying to pace me out first.  The device has since been reprogrammed to discern the SVTs and  withhold  therapy for them.  I have  been cardioverted the old-fashioned way without drugs (you know doc sternly says "clear",  puts paddles on your chest  and  delivers a 200 or 300 Joule shock).  My ICD provides 60 Joules  and  when I am  shocked, I  see a flash of light, pretty much all my muscles contract  and that  is it.  Last time  I was shocked, I was on an exercise bike.  The only time I fell when shocked was shortly after I  had the device  first  installed in 1997  and  received an inappropriate shock while running in full stride playing soccer,  (The doc did not appreciate how high my heart could get during exercise in normal sinus rhythm.  He  reprogrammed it.)

I have ARVD which causes various bad rhythms, mostly V-Tach in my case which I tolerate pretty well even at 220 BPM and can  walk around talk and generally function while  it is going  on.  It does upset ER docs when you show up with V-Tach, they know that it could convert to V-Fib at any time and  that is pretty much death unless it is stopped immediately.  That is why I have the ICD, the  occassional shocks are not fun, and  without them, I might still be alive, but perhaps not. (going back to 1980, age 34 then, I  have had what were probably episodes of V-tach that ended spontaneously until  I was first cardioverted in 1986 after which I was placed on some beta-blockers that  did not really work very well, and the symptoms disappeared for about 9 years, however, in early 1997 they came back and  there was a period where I was having at least daily episodes of V-tach lasting from a minute to a half-hour that all ended spontaneously.)  I  have had 3 ablation procedures to address the V-Tach, but the ARVD will likely cause more sites  to form and  new arrhythmias to arise.  There  is  no way to tell.

Now, I  continue to  exercise, play soccer (when  my bum knee lets me), work on the house, including climbing ladders and using a chain saw, etc.  I am not a hunter, but if I were, I  would  figure out a way to do that even with the ICD now on my  shooting side. It  is unknowable whether my ICD has actually saved my life or not, but  doing  the experiment of finding out might be fatal, so  I will keep mine in.

[jrbon]

John,

I fully understand you, the fear to feel like you feel now it is the reason why I had refused the defib. for more than 2 years now.

What it is the issue that you have, is it with the shocks or is it because of having the device inside?

I ask this because as you probably know there are 3 levels of removing it:

1) Just to stop it, easy to do externally. However, depending what country you are in, you might need to pass a psychiatric evaluation to allow the dr. to do it (I think this happens in UK).

2) Extract the device, simple intervention, just cut, loose the leds, extract and close.

3) Extract the leads, a difficult, and can be dangerous, intervention. Only a few people will be able to do it on every country. More difficult as longer they are in.

Good luck.

Jesus

[john132]

I have a Icd and want it out now! I can't take this in my body much longer. Told my doctor and he will not take it out. I wish I was dead at times. Just can't take this thing in me at all. No one seems to understand. I am not the same person because of this ICD. I hate life and I hate how this thing makes me feel. I would rather be dead then to go on living with this thing in me. I don't want to die don't get me wrong. I just can't live with this thing in me. I need to find some one who can take this out of me. I often thought of taking it out my self. Just don't want to mess it up and get killed doing it.

[Teachers_Pet]

I've had my ICD's, on my 3rd, since 2002. One was recalled and one single lead replaced with a new 3 lead due to CHF last summer. My 3 devices have saved my life a total of six times according to the strips after interrogation , I feel great and have, since been recovering from given 72 hours to live in 1998.after  3 heart attacks at the age of 47.  I had lost my 66 year old father to SCD two years before . My EF at that time was 16%, now with the 3 lead device it is 37%. No way would I ever consent to have it removed without a replacement on hand. Those of you who insist on removal of your ICD are in need of some in depth counseling , the only other option is death.  The therapy is akin to touching a 110v wire to me, sure it's unpleasant and there is some depression for a couple of hours afterward.  But to me the depression is more over the idea that an adjustment in the device or my lifestyle is soon to come from my EP Dr or Cardiologist.  Besides if I hadn't had the ICD, I probably wouldn't have lived long enough to go through treatment this last winter for prostate cancer

[heartwonderer44]

ARRRRRGH!!!! I"M 2 DAYS OUT FROM HAVING ONE OF THESE GODLESS PEICES OF CRAP PUT IN ME!!!! Who else here had heart flutter during EP study? They say I'm in grey area. I'm holding at 35% EF right now and am at risk for sudden death because they made my heart flutter during EP study and because my left muscle has some damage that they don't think will recover since the meds so far haven't worked up to the 9th month. BUT I DON"T FEEL THE SAME WAY!!! I feel fine. Never had any rhythm problems before. Have one stent in right now. What the hell do I do yall? I don't want unjustified shocking!! GREY AREA means they are making  A CLINICAL CALL. I'm not A Fib, V Tach, not having pvcs or any of that crap. They just think I'm at risk for this flutter. During rehab I had to work pretty hard on the bike to get my heart rate up to 130 and felt great doing it, like my heart was pumping precious blood and possibly moving my EF up a little. I felt like I was recovering. Now they got me worried I can't survive another day without their blessed ICD. I HATE THE IDEA!! DON"T WANT IT!! What should I do????? I can still call it off!! HELP!!