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REMOVAL OF ICD
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?
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967168 tn?1477588089
Good luck next week with your testing.  I'm with you; my ICD saved my life less than 6 weeks after having it, but I didn't find out about it until I had my interrogation 2 weeks ago..  

Every single day I get up I think of a new reason to be happy I'm alive; and if I get shocked again, so be it...at least I know it's doing it's job and keeping me safe.   I get sustained VT episodes and I pass out and during one of those times is when I was shocked, and converted 2 other times just before shock.

During my visit the Boston Scientific tech asked if I had any problems or events and I told her about fainting, so she checked right then and found some of my settings were a bit off and reset things so it's a bit closer.

Do you get a printout of your interrogations?  I asked the tech and she said they normally don't give them; but I said I would REALLY like a copy please :) smiled sweetly and got mine lol   Reading it on paper and having the results showing my VF & VT's got me to thinking what I was doing at those times and I started charting things I'm doing if I feel twinges or pains.

Before  my ablation, none of my testing showed PAC's, but some showed up on the day of surgery, anxiety maybe? Now I'm being Atrial paced 28% of the time and Ventricular paced 1%. It showed quite a few PAC's and only 1 PVC vs over 54,000 pvc's and 1 rare pac's

I'm set at low range of 50 HR; and higher range is set at 175 for VT and 220 VF. Anything below that it paces; they had to reset it to a closer recovery rate because I'm passing out in 50's HR, which she said is rare.
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I have had an ICD for V-tach since 1997.  Now have my 4th.  First replaced due to bad capacitors, second after 8 years the battery was low, third was replaced along with the lead when I got an infection having installed.  In that time, I have received 17 shocks as well as have been successfully paced out of V-tach at least 5 times  Most recently I had 10 on a single day of which at least 9 were inappropriate.  The 60 Joule shocks are never pleasant, but 10 in about 30 minutes was a bit much.    
My devices first attempts to pace my heart out of the bad rhythm and I notice that because it makes me dizzy so it generally gives me some warning.  It is interesting in that if I am paced first and recognize a shock might be coming, the shock does not feel as bad as if it comes "out of the blue" like a couple of the 10 did.
All the shocks, with the exception of the 10 in a day came while exercising.  The suspected reason for the 10 shocks was atrial driven rapid heart rate following an ablation to "fix" the V-tach.  My single lead ICD does not treat atrial arhythmias successfully, so It just shocks me and the high rate keeps on going. The hope is that the beta blockers and anti-arhythmics will keep my ICD from going off (and they have prevented Atrial fib/flutter so far, 3 weeks) until I am recovered from the epicardial ablation (outside of the heart rather than the inside).  One EP says a month, another says 6 weeks.  FWIW, the ablation did seem to fix the V-tach, but I have ARVD which means that new sites that cause V-tach can arise.
Other than in the 6 weeks after the leads were installed, I have not limited my activities, except I am no longer a competitive runner.  I still jog, lift weights, play soccer, referee, ski, use a chain saw, and other power tools, climb ladders, SCUBA dive (to 100 feet), etc.  I even had an MRI prior to the ablation.  Of course, I keep the power tools at arms length (hugging a chain saw is never a good idea anyway).  I am not doing any of those things right now while I wait for the Atrial stuff to resolve (and to get my courage up again).
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I have an ICD now after going into cardiac arrest one week after having my baby.  I had been on a beta-blocker for about 4 days when it happened. I had went to the ER for shortness of breath, but when I got there they admitted me with a bp of 204/94 and a pulse of 44. After two episodes of V-Tach in 15 minutes I went into cardiac arrest. Luckily I was at the ER. They could not determine why it happened, but did discover that I had Long QT Syndrome that I did not have when I left after having a c-section.  I do agree that doctors do not understand what it is like to have an ICD installed. My EP acted like it was no big deal, in fact he told me to live life like it was not there, and that I could probably get off my Coreg. My Long QT Specialist said "no way!".  He increased my dose and told me never to excercise to the point that I sweat. And not to swim because you can never tell how worked up you are getting. I need to avoid get my adrenolin up to avoid getting a shock.  Well I agree..I dont want to get shocked.  So it has been four months now since I had it put in.  Yet the incision is ALWAYS sore. It is healed up nicely but is tender to the touch kinda like a sunburn.  It was a huge change for me. I had to see a shrink because I was so scared to drive because I dont want to hurt anyone else while on the road. I still dont drive much. But I dont think my shrink was very good. She told me that I was probably the safest person on the road, so I needed to just get over it. But its not just that. I am scared to be home alone, or to hold my baby.  I pray to God everynight and thank him for giving me a second chance at life, and I ask confidence to continue learning to live again. I think every doctor who is going to install the devices should start a support group among their patients. I am only 26, so talking to someone my own age would make me feel better than a doctor who is older and does not have an ICD.
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Hello I'm 43 I'm just getting my icd 2days ago and I'm scared to death I feel like I just signed my own death warrant
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I am 30 years old and was diagnosed with Long QT when I was 25 after going into cardiac arrest - my first child was about a year and a half. I also take beta blockers and have an icd implanted in my chest.

It is scary. It does change your life, but you don't have to live in fear. There are lots of people out there with LQTS, and many online support communities. If you are on facebook, look for groups or you can go to sads.org for information. If you would ever like to talk, I would be happy to do so.

I would also recommend that you talk to your doctors about genetic testing. This will be important information for you and also for your child, who may also have long qt.  Though you had no symptoms before, this is a genetic problem and your baby should be given an EKG at the very least. I have two children now - one child is positive for long qt syndrome and takes beta blockers.
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I am so sorry to hear about all of your horrible stories regarding icds and my heart truely goes out to you .. I myself have had an icd since the age of 7 ... I am now 21 and am on my 4th .. I have had 5 surgeries and 1 open heart due to a lead fracture and infection that attached itself to the lead .. After giving birth to my son a week later I went in to have my open heart and then 2 weeks later to have my icd reimplanted ... I have had my fair share of bad experiences such as leads breaking, infection, wrong programming leading to unnecessary shocks (6 at  one time once) ... However with all the bad I have to be thankful because without it I would not be here .. I hope you can figure this all out ... God bless
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can thay take out my icd and leave the wires
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hello all I have a icd.but now my doctor done a mitro valve change put in a pig valve the doctor said he can turn off my icd I got it in 08 never been shocked.I drive a truck and you cant do it with a icd so my doctor said he may take it all the way out he said something about leaving the wires in.I feel great thay should have a new valve in a long time ago I just found this site can anyone help do thay leave eires in thank you
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no one want to talk to me help me out a little,I'm a nice guy just trying to see if anyone has been where i'm at.I have no one to talk to but the doctor I thought I might get a responce on this site thank you all vary much still looking for a little help
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You know, this really makes me sad with the bad experiences with ICD's.  I'm only 24... had and ICD placed in me when I was 21.  I've had bad times with it and have been leading a better life style by sleeping for at least 8 hours, working out, and eating healthier... but reading this discussion does make me feel sad since I'm so young with this.

This really discussion does make feel depressed again. How do you coup with this problem?  So alot of Dr's go against taking it out?  Is oblation a good option when given the choice?  I have lots of questions....
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Ive drove trucks for 19 years but had to stop when I had my ICD implanted Aug 2009, my heart EF was 30% , 2 months ago I had another echo cardiogram and my EF is now at 50-55% (which is back in normal range) and I am having my ICD removed on Dec1st. The doctor told me that they were gonna leave the leads in because it would cause a lot more trauma and, God forbid, if they would ever have to put it back in they would just have to put the unit back in.I credit God and medicine for my recovery so good luck with your situation.
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I have had an ICD in place for the last 3 years, after being diagnosed with Brugada Syndrome. The lead fractured almost a year ago, and the device has been switched off since that time. I am planning on having both the box and lead removed in the next couple of weeks.
I have never needed the device since it was implanted, and therefore feel that the risks of having it outweight the benefits for me..

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1582412 tn?1296600545
I too want mine removed. I have not had a shock (knock on wood) and I only depend on my pacemaker 1%. I have been suffering from depression since I had it implanted and I feel like I have nobody to talk to about my feelings. I try talking to my husband and he just puts a guilt trip on me. Everytime I go to the cardiologist, they say my heart looks great. I just feel like I don't need it, but am scared to tell my dr because I don't want him to offend him. Can anyone give me any advice?
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967168 tn?1477588089
I'll find out Friday if I have to have my leads replaced, which has made me cranky and have nightmares about.  My ablation 2 days before implant left me with nightmares and depression over my health issues - my heart stopped 3 times and I am scared to death to have another surgery.  Nightmares started last week and I'm so fatigued and miserable from all this I'm ready to just say forget it.

From my previous post in this thread you can see I have VT and VF episodes but still I question if I want it replaced. UGH I can't stand having to go almost 2 years and lead movement and possible fracture/leakage - am I supposed to do that every 2 years and live in fear that maybe it won't work when it's supposed to?

I don't know what the dr did, but I've had nothing but pain and problems in the area where he implanted it.  The vein is so prominent and often goes numb and tingles where you can see it's placed that I wonder if an artery isn't clogged or pinched or something similar to that.

taken1111 we all understand how you're feeling; unless you've been through what we have, I think it's difficult to empathize with what's going on.  Please feel free to PM me if you need to talk =)
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1686743 tn?1306009051
WOW, Now I want mine OUT. And wish I saw this Community Before It was implanted in me. For two years now I have NOT let them put it in. I have a operational Aneurysm plus I have to have a upper and lower GI, and they wouldn't operate till I did it.They said I wouldn't  survive either GI or the operation. My Aneurysm is  5.3cm and ready to bust. Because of the Medication I'm on they said  had to have it implanted. So NOW it's in. The reason they first  told was I could fall sleep and not wake up. AT rest my heart rate can be as low as 50pm. Blood pressure 74/45. Shoot I've been known to walk in the hospital that low... I do NOT WANT THIS THING TO ZAP ME. I'm going to demand that they take it out. I have pain issues which requires medication which is a another issue. I wish not to be in a wheel chair in pain and foaming at the mouth.
I wish every on in this forum Good Luck,


BlueKnight
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1679243 tn?1307678538
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!!
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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
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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.
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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
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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.
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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.
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John,

I do not know, what country you are in, but it should be a way, protected by law, to get your health decisions made.

Please do NOT EVEN try to do it by yourself, the risk of infection it is very high because it can easily propagate to the inside of your heart. Remember the leads are there and they offer an open, fast access for any bacteria to the inside of your heart.

Jesus
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I am on my third ICD.  I have never been shocked inappropriately, and I am scared of that happening because my leads are now 13 years old.  I have, however, been shocked on 8 separate occasions, and each time I would have been dead without the ICD or immediate medical intervention - half of those times I was alone so I would definitely have been dead.  Any restrictions I have are due to my medical condition, not the ICD.  I am grateful to be alive, grateful my cardiac arrest happened after defibrillators were invented.
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Hi - I know it's been quite awhile since your post about wanting your ICD removed.  Just wondering how it's going and if your feelings have resolved.  I had an ICD in for ~ 7 yrs and had mine removed.  Please lemme know your status.  If you'd like, I have plenty of info and experiences to share.  Hope u r well:)
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Hi - I know it's been quite awhile since your post about wanting your ICD removed.  Just wondering how it's going and if your feelings have resolved.  I had an ICD in for ~ 7 yrs and had mine removed.  Please lemme know your status.  If you'd like, I have plenty of info and experiences to share.  Hope u r well:)
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Just curiosity... what the reason was to get it removed?

Jesus
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Hi, i was wondering how were u able to get it removed, i have had mine in for a year and i hate it, my heart went into VTACH once and since then has performed perfectly i am in the military and cant stand having it in but my doctor is being a pain when i bring up taking it out. i am extremely depressed and can use some help with some one who was in my position. Please write back thank u
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I am also from NJ and would really appreciate some advise on the topic thank u
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I've only received two shocks. Both saved my life from very nasty VTachs. I was at home for the first, and two nights later in ICU when they happened. This is all very recent. I've since had an ablation surgery and have not have any episodes.

That said, I have a friend who has the same exact condition that I have (which brought us together). He was shocked 12 times the day after it was put in because the settings were wrong.

You have to find the absolute best Electrophysiologists you can and get your device set right for you. It can take months of follow-ups to get there, but you will. And soon enough you'll forget about it.

Your husband should also see a psychiatrist for PTSD. I did (do) and it's helping a lot.

In the end, I have two young children and I've decided that I want to be here as long as I possibly can for them. I find a lot of comfort knowing my ICD is there for me. I'd rather have one scary shock than drop dead at 40.
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i had my icd implanted at the age of 23 its been 7 years today i wish i never had it  put in it has totally ruined my life i was shocked 15 times one after the other because the programming was changed i talked to my doctor and was told "you should do some research and then make a choice of what i want to have,turned off or taken out" he said it has all been un needed shocks i now need to make a choice cause  the damn thing is beeping i just feel lost and need to  vent















"
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You mentioned you had your icd removed how is it are you ok mine was placed for what I know was a misdiagnosis or just the the fact that i was the perfect person to use as a test object for rescearch, the reason I say this is because I was 23 had a few symptoms of postpartum cardiomyopathy and at the time had meth in my system  went to the er for what I felt was a chest cold to be told that if I left without having a icd implanted that I would not live a week so at the age 23 not knowing anything except for what these dr were telling me I figured this was his job to make sick people better . I'm only 23 I want to live many more years I have 2 little boys that need a there mother is all I could think about ,so made the dumbest decision of my life ,to have the operation and the icd implanted.about a month later I received my first shock that time I was doing laundry I felt fine no warning signs no fast heart beats or any thing  2 months later same thing doing laundry got jolted 2 times so went seen the dr that implanted it he changed a few things and told me to see a different dr over the time   about a year I was jolted 2 or three times and seeing a new dr no longer seeing the one that stated I would die without it as he never requested a follow up only told me to see another dr was seen 1 no more than 2times a year to have the device interrogated and meds filled nothing more in  December of 07" I had a ultra sound done on my heart no results given until my next appointment which was july of 08" seen the dr she tells me my heart looks great sends the nurse in to interrogate it and says see you back in about 6 months the incompatant b|#%h sorry for the language that did the check was not the same person who did it in the past she for no reason I know of  changed the settings I did not know she done this until I was leaving the office which was located in the hospital I made it about 500 feet when the device shocked me so I no more than turned around to go back to tell the dr it happened when I received another one than screaming trying to get back down there 2shocks back to back   And after about 12 shocks I finally staggered in to the office screaming for help just so happened I was the last patient of the day so no one at the desk  finally a dr herd me screaming came to find me still being shocked  help me in to a room and yell at a nurse get the fuc...ing magnet now hurry still getting shocked crying out why please make it stop please I think I was jolted about 5 more times before it was disabled with a magnet  so in total about 18 to 20 times one after the other  wow it is not easy to  talk about this without breaking down so I will return in a few to cont my story ......
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I want it removed
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I had an icd put in for hcm a few years ago after being pressured by my doctor . I was miserable . Lost 30 lbs and felt like crap because I couldnt do anything . I begged my cardiologist to take it out and after a bunch of tests and paperwork , he agreed . One doctor told me I would be lucky to live 2 months without it. Its been 3 years and probably the best 3 years of my life. I know these things save peoples lives but mine took mine away . I am 40 btw.
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I have not read every single post, but more than half, I'm sure at this point. Sorry, this is my vent. I see so many on this post who, in my humble opinion, are reacting like babies. Grow up! There are children, CHILDREN who have to have these devices implanted!! Quit feeling sorry for yourselves and be grateful for the life that you have ben given! Heart disease robbed my daughter of her childhood as well  as her teen-age years; SHE didn't have a life; at 22 she was transplanted. It appears many of you have NO IDEA of how bad things can REALLY get so start counting your blessings in that ICD that is saving your life! If the ICD is screwed up, it's because some idiot doesn't know how to program it correctly; don't put the blame on the ICD, put the blame where it belongs and get on with your life!
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why did the your insurance cancel you? was it because you had it turned off? I had one put in 2008 they told 5 -  7 years. 4 years later they are telling me I need a new battery. It has never gone off. I just want it out.
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in 1987  age 27 was mugged stabbed in chest/heart had myocardial contusion resulting in low ef,was put on ace inhibitor,alot of em,ef went back to normal,recovered fully,THEN in 1998 had M I ,vtach the works.. they put in icd shocked the hell out me alot,come to find out that i had anneurysm,heart doc says lets resect enneurysm,and u wont need icd--after open heart surgery to remove anneurysm icd out had neg eps study and it came out in 1999 and so far im fine,think my ef is around 40 or more,take  metoprolo n lisinopril daily--see primary have bloodwork done and even ekg yearly,but i havent seen heart doctor in 10 yrs,all they want to do is echoes/thalium studies up da ying yang then giv ya bad news,no thanx!!!! i wud have had that icd removed even if i had pos eps.i want to live in peace,in no way was any of my life peaceful or fun when i had icd,FEAR personified!!and besides the eps doc told me in 99,the icd damages ur heart w/each shock. yes icd may save ur life,but hows life when ur constantly in fear of being hit by a damn recking ball 24/7---i guess ima big baby but i feel peace now booby
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I had an ICD implanted just before Christmas, I went for a check up last Monday when the Nurse suddenly asked me how I was feeling, I said fine, she then said that the previous morning 6.20 to be exact, she said the device shocked me, and the reason was my electrical pulses in my heart where so faint she doubted that anyone without an ICD would have made it.
I have to admit I have hardly slept since Monday, one moment I'm fine, the next I want to burst out crying I am so scared.
The shock did not hurt at all, I was awake at the time she said, the only thing I remember before waking up after passing out, was a sudden and very severe dizzy spell.
I then realized that the same had happened a few weeks before, on that occasion I was shocked twice within 5 minutes, all occasions exactly the same, starting with a severe dizzy spell, then waking up.
I am so worried for my Daughter, I think that's what the tears are about, she is almost 19 but has mental health problems, my wife left last March, I am so worried it is doing none of this any good,
I have always considered myself a big guy who could handle anything, but this has got me scared stupid, and I cant go to the A&E because there is nobody to look after my Daughter.
I am hoping that time will be the healer and the more I get used to it, the better I will feel, especially when I think that last Sunday, without my ICD, I would not be typing this now.
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Hi, I don't know how long ago you posted comments. I am due to have my icd replaced in Aug 2013, in the UK. I too am a depression sufferer with bi-polar.
I think about the end and don't know if I really want to extend it. It is a concerning dilemma, if you can help with your final decision I would really appreciate.
Who can you talk to?
Michael
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Hi John, how did you get on re removal. I am due for replacement next month, and I am struggling with the decision. Don't want the chance of ending up a veggie dePendant on this machine!
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i was diagnosed 8yrs ago with a.r.v.c after my 23yr old brother died suddenly playing football. i have had my i.c.d fitted for over 7yrs now and carry on a normal life!! i work 7days a wk as a scaffolder!! their arent really many restrictions to what you can do with your defib other than run around like a lunatic!! if your worried about it goin off whilst lifting things and having fun. go back to your specialist they can tweek it to suit your needs with the confidence to you that it is still there to save your life!!!
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5986485 tn?1377873932
Hello to all, I have one also (3rd device so far) my first one was installed over 10 yrs ago. the first time I ever got a shock was 2 yrs ago. and it only shocked me due to the fact that I was dead before I hit the ground. restrictions in life? I was a log home builder, father of 2,and no health issues ever. when I was diagnosed with IHSS (idiopathic hypertrophic sub aortic stenosis) now know as hypertrophic cardiomyopathy, it pulled the rug out from under me. I was a beast of a man,strong as a bull. and couldn't accept that I was told to stop all sports and physical work.(no insurance and no income if I was to stop working. so I kept working..every place I have ever worked has found ways of getting rid of me when they find out I have this disorder and icd in me. I can still work as hard as any 21 yr old... and I am still walking this earth because of my icd. you guys better rethink all of these excuses each and every day before having your icd removed or even shut off.  as far as I know Doctors don't go putting these in for stupid reasons? if anyone is having shock storms? they should get the device checked immediately at a pace-clinic. the programing must be wrong or the device has some sort of defect (ie bad wires that are causing noise that makes the unit think there is a problem, thus shocking you for the wrong reasons)
my disorder has now been traced back to a genetic mutation and with the data recorded from my last (death event) my daughter now has her own icd and one of my sisters (family of 7) has one also. we are all safer with the icd than without. yes for many yrs with icd and no shocks, I was often wondering if it was a necessity? but now that I had this unit bring me back to life, there is no question in my mind.
keep your chin up and carry on as best you can with your loved ones close to you, tell them you love them, and be careful what you wish for.
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I have been supplementing with Magnesium Tuarate for 19 months now.  I scan my device at home every Monday morning.  Since I started Mag,  I have had ZERO,  VT's or any kind of pcp's.  I was having up to a 137 VT's a month until I undertook the Mag therapy.  80% of the US Population is deficient!!  Mag regulate's electrical  issues in the heart!!   Doing so well I will have the AICD taken out!!
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I have no idea what anyone is talking about, except I'm about to have an ICD implanted in two weeks,I have heart failure,non-congestive heart desease,mitral valve regurgitation and reading about these shocks is scary, I don't know what to do help me
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Don't reply if u don't have n ICD implant, I'm about to have one implanted in less then one week, I'm scared after hearing about these shocks, please talk to me
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I had my ID implant 3 years ago and in that time it went off twice approximately 1.5 years apart . My advice is learn what the symptoms are if you get dizzy sit down fast you only have 1 second before you find out the pain you will have after you hit the pavement. In my two cases I past out and didn't feel the shock but the first time I felt the ground learned my lesson fast . GOOD LUCK AND DO WHAT THE DOC SAYS TELL HIM EVERYTHING
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I have had  ICDs since 2002, the 1st a single lead was recalled by Medtronic after it had administered 3 needed shocks, it wasn't faulty on later examination. The 2nd single lead was removed after another 3 shocks in late 2009 in mid 2010 for a 3 lead upgrade due to the onset of congestive heart failure. The 3 lead unit I have now has only "charged" one time that has shown on downloading by a Pacer Nurse. It hasn't ever "shocked" me.  I feel much better than before 2009 due to constant pacing  which now gives a regular heart rhythm.  
Background. I had 3 heart attacks in one week in 1998 at 48, basically lost the lower third of my heart.  At one point while in the CICU my wife was told she might want to contact our kids since I might just have 72 hours. I'm very happy to be here and don't grudge the device the occasional ZAP.  To me  the shock is no worse than the one you get changing out an electrical outlet, after having turned off the wrong circuit breaker. Except it's in your chest instead of at your fingers. Afterwards I have cold sweats and feel light headed for about 10 minutes. The sweats and light headiness happen also if it charges and doesn't give therapy (shock), so at least I have a warning it's about to happen, if awake . Then it passes.  Don't worry about the shock, worry about your future without an ICD.  My father died of sudden cardiac arrest at 66, on his daily 5 mile walk,  2 years before my heart attacks. Looking back, an ICD would have probably kept him going a lot longer.
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im 52 years old and my lifestyle cant get any healthier. when i was 38 and working out on our new bowflex i collasped, was in a coma for 4 days and the doc and my family decided to let them implant the defibrillator, well i have had a total of 3 and didnt have any issues until abt 3 weeks ago i was mowing my lawn and it shocked me 4 times and it hurt very bad and i was taken to the hospital and stayed overnite for observation. apparently my rate to set off the icd was set to 172 which for me is too low, i dont know if someone set it to that or it just went there by itself i too think of it constantly and keep thinking about getting it removed and maybe i can control my heart rate with medication i have a doc appt may 7th i hope we can figure it out......i use to be fearless because of the difibrillator but now i am fearful..............
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I'm a pacemaker/ICD technician and I'm not sure if it was explained to you but...being around things like a lawn mower, chain saw, or a running car motor can trick your device into thinking your heart is going fast and therefore deliver therapy aka a "shock". Because of the electrical vibrations emitted from the mower...the device picks it up and thinks it's your hearts electrical impulses. Stay away from large running motors and this will not happen. ICD's have come along way since 2008 when this thread started, but you need to be aware of things that can cause unessesary shocks. Ask the company who made your device for more information. It's rare at my clinic to see inappropriate shocks, but these are the reasons they happen. If they are not programmed correctly there may be a problem. Leads can break down and also cause this. Having a care link monitor at home can send info to your clinic to avoid problems before they happen.
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This is October 2014 did you ever get it remove and are you ok
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Im 17 and about to get an S-ICD implanted. Do all of you really hate the implant that much? I was already scared to have this operation and now I'm downright terrified! I have Long QT Syndrome and I already had to give up my ability to run cross country, participate in competitive swimming, and play soccer. I don't want to feel all restricted my entire life. I'm nervous about getting shocked, my doctor said it feels like you have been kicked by a horse in the chest, but he said it was fleeting pain. I'm just really scared and do not know what I should do or how I should prepare for the surgery.

Can anyone offer and advice or help?
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Were you able to get it removed?
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I have an ICD put in 2007 it has never gone off now the battery is dead. Dr. wanted to replace it I don't want it I want it removed. I never changed my life style other than the fact I cant go through a metal detector which is embarrassing when in travel or with people I work with I'm around large electrical motors all the time this thing like I said has never served a purpose the leads had to be monitored because of failure with other peoples devices I just want it removed cant get that through the Drs. head Anyone know what I can do  
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12050237 tn?1423151316
I've had mine since Christmas Eve 2014. I got shocked for the first time twice in a row (in just a few seconds)  on January 17th, and it knocked the breath out of me a bit and I fell when the second one hit, but it wasn't too bad. It shocked me once in my sleep, but it wasn't too bad either. It took me a minute to realize it wasn't a dream.

I think it's worth it. If it's too strong, they can always turn it down. They are able to make adjustments to fit your body's needs.

I would rather have this there to save my life, than have a heart attack again, only to end up at the ER where they'll shock me with the paddles. No thanks! I've done that and it burns your skin.

BTW, I just turned 31 on January 29th and I have been having heart surgeries (7 in fact) since I was 13. I know it's scary, but nobody can decide for you whether or not you can handle this. It is a real trip. Gets inside your head and makes **** real. But I would NEVER take mine out. Mine is a pacemaker/defibrillator combo. I feel like I have a safety net.

I hope you find peace with yours. I am still adjusting to mine, but I would be terrified of dying without it.
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How do I get this out of me
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