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70 Responses
Avatar universal
Why are you considering removing it? I don't know what your chances of survival are, but I can't imagine they would be any better without the ICD. Good luck figuring it out!

Fellow ICD recipient
Avatar universal
My husband just recently had an ICD put in 9 days ago..  He has a very weak heart and is a prime candidate for sudden death is what his cardiologist says.  Well, 2 days ago he got shocked 8 times in a 2 min. period and when he went to the emergency room they said it was unjustifiable and he shouldn't have gotten shocked.  My husband is scared to death now and wishes he had never gotten this done.  He is a big guy and is pretty tough and he can't sleep because he is thinking about it every minute since he done this procedure.  I wasn't with him but the guy that was with him says that after seeing my husband go through what he done that if a doctor EVER told him he would have to get one that he would not get one because it scared him just watching my husband scream out in pain.  
I'm trying to talk my husband out of it but he keeps saying that until someone takes off the electrical outlet and hold a naked wire and feel the jolt of what he felt or worse...they don't know what he went through then they can't say anything about him wanting to get it out of his body...or turn it off.  And oh yeah but he is only 39  fix'n to turn 40 this month..

Any comments on this????
Did your husband ever get his device removed?
Avatar universal
Was the ER able to interrogate his device to really determine that his shocks were unjustifiable? Personally, I wouldn't be confident with the ER's response without first checking with my electrophysiologist. Secondly, if the shocks were inappropriate, perhaps the device can be reprogrammed. I have had my ICD for four months and so far no shocks, so I can only imagine the horror he went through when he was being shocked and the trauma he's still suffering from those shocks and the questions about whether he should have the ICD. Even without the ICD I questioned if I really needed mine...but what will his state of mind be if he gets it removed or at least turned off and then has to live with the chance of sudden cardiac arrest. You might check out http://www.icdsupportgroup.org/. I know that people on this forum have experienced similar kinds of shocks. There is a term called shock storm; that may be what he experienced. Good luck!
Avatar universal
Also, just to give you another perspective on living with ICDs...I know an ER doctor and I asked her if she'd ever seen ICDs malfunctioning. She said, "No, but I've seen them work." Many people's lives are saved by these things. The psychological impact of having these devices implanted is not dealt with by the medical community very well at all. There is support online at the above mentioned forum. Also, many people benefit from counseling or anti-anxiety, at least for the first few months while they are coming to terms with being a cyborg.
Avatar universal
I recently had my ICD turned off after having it for over four years.  Hated every minute of it.  It went off only once in public but almost bit my tongue off and chipped a tooth.  Come to find out it was programed wrong.  My partner of twelve years is scared to death of it.  It looks like hell. If and when I do have another heart attack, I want to just go.  Ending up in a wheel chair drooling my life away is NOT how quality of life should be.  My doctor has made it very clear he does not want to remove it.  It took me two months to talk him into turning it off.  Getting the ICD was fairly easy, getting it turned off and removed is proving to be a nightmare..........  I would NEVER recommend this device to anyone for any reason..........     Now getting it removed is proving to be very very difficult.  So far only the Mayo Clinic has expressed a willingness to remove it.  The recent cancellation of my insurance is now making me save up enough to get the thing removed.  
391561 tn?1227047215
Hey Don, very sorry to hear of your terrible experience. I have had an ICD for 4 months now. I too, regret agreeing to have this thing 'installed', lol.  The restrictions it places on my life are beginning to really annoy me.
  From your profile, I see that you were/are ?  a carpenter. Are you able to still work? I would think it impossible with the restrictions they give us. It wasn't until after mine was put in, that I was told I can't lift anything over 10 lbs. I have ALWAYS been a very hands on guy.
  Oh, and I have property up in the mountains. Don't you know, first time up there after it was put in, I find a tree down across my driveway. Chainsaw in shed did me no good. Not supposed to use them anymore. ..  Did front brakes on my truck, it has very large 33 inch tires. Embarrassed as hell to have to ask my neighbor to lift them onto rotor lugs. Want to sheetrock garage, guess that's out. I can go on and on....
  I sit here knowing that my ICD can save me....hmmmmm, very nice..... but all I can do in the meantime is wait for it to do it's job....I feel useless.
  Just venting, sorry. I was curious as to how 'physical' you are able to be..  The thought of tearing the leads out of my heart, scares the ***** out of me.
  Still trying to figure it all out, myself. Are you able to be more physical now that it is removed?  ( strenuous work, I mean).  When you truly are a hands on guy, it is EXTREMELY tough to become a pinky out, watch my nails, don't want to hurt myself slug.
  I hope that your decision proves to be a beneficial one for you. Wish you well, Steve
Avatar universal
I've had an ICD for 4 years and it has saved my life.  I don't know why I would ever consider getting it removed.

Sirenet-I was told after it was implanted that I couldn't lift anything over 10 pounds while the incision site was healing.  After that I could do anything I wanted.  I have a lifting restriction but NOT due to the implant but rather due to heart disease.  I own a business in the lumber industry.  I have lots of heavy electrical equipment.  As long as I stay at least of a foot away from heavy motors (10-25 hp) I am fine.  I have never had a problem with interference from any AC electrical equipment.  DC electrical equipment (battery operated equipment) requires a little more care and awareness.

I have several friends that all have ICD's and none of them have any trouble doing strenuous work.  Two of them regularly run Marathons and another is a serious weight lifter.  They aren't having any issues at all.  I think alot depends on the reason for the ICD.  Is it due to heart disease as in CAD, arrythmia only, cardiomyopathy etc.
Avatar universal
Hey buddy,  Went back to work less than a year after having my ICD put in.  No work = no eat.  Have ignored all the advise about lifting, heavy elec. equip., motor interference and all the other restrictions.  I would never be able to earn a living keeping myself "safe" from all the warnings.  It (ICD) has only gone off once but it was unreal.  Almost bit my tongue in half and broke a tooth.  So as I stated earlier, I have had it turned off and am checking into the removal of the control unit.  Medtronic and my Dr. are fighting this tooth and nail.  Tried to shoot skeet and it was a mess, cant hunt birds and end up just walking in the woods.  Dog thinks I have lost my mind.  When I have another massive heart attack, I just want to fall over and be done with it.....   Took care of both my parents for ten years while they slowly died of heart failure and will NOT go that way.  Took me years to dig out of debt and will not put my partner through that.  Have actually lost jobs and been fired for having this damn thing in.  And they had the audacity to tell me so.  Gotta love it...............
391561 tn?1227047215
Pusher-  I have Dilated Cardiomyopathy (severely enlarged LV and CHF, EF of 25,along with arrythmias - V-tach, A-fib, tons of PVCs). Cardio Dr does not want me doing ANYTHING strenuous. EP Dr gave me weight limit of 10 lbs. I initially thought that it was for 6 weeks until leads seated and incision site healed. Upon follow-up 6 wks later for interrogation, etc, EP Dr and his physician's assistant insisted on the 10 lbs limit. I looked at my wife and said "no way, that's impossible". She couldn't believe it also. She even asked them and they said " never". My heart sank and I thought "oh my God, what did I just do?"
   I have cautiously pushed the envelope somewhat, but when I went to lift those tires, the pain was frightening, thus humbling me. The first time I tried to be useful, unloading and stacking a cord of wood for my father-in-law, put me into V-tach.I can deal with all the sympyoms I suffer, PVCs, SOB, lightheadedness and discomfort from the site area. But when I was told about needing open heart surgery to repair the heart if the leads tear - well that really scares the ****out of me.
   I called medtronics and they say it is up to Dr to set restrictions.... So, I don't know. I can't believe the limitations, but my wife was there for discussion as well).
  I commend you on how well you have adjusted. I plan on a good "talk" with EP upon my next visit. I was too shocked and overwhelmed the last time.

   I agree with you. The quality of life is extremely important. When I returned home from hosp, after 12 day stay and 1st learning of my condition, I was catatonic from the regimine of meds they put me on. For 2-3 months, I felt; "if this is my new reality - forget it!" Thank God, I have adjusted somewhat better. I realize and accept that I will not lead a long life. The issue now is to try and figure out the highest possible quality of life- given my restrictions.
I apologize if I have rambled here somwhat. As are all of us with heart conditions, just trying to figure it all out. The Ep Dr called one evening, 10 days into a supposed 30 of heart monitor, slapping me in the face with; "you are having daily runs of V-tach, the ICD is a must, because one day you are not going to come out of it on your own". So, here I sit, with a weird bump on my chest, my silent friend.......
                                                                           Regards, Steve
Avatar universal
Sometimes you just have to take control of things.  Dont let ANYONE decide your quality of life but yourself.  This friendly bump on my pec is not really an enemy, its that I have let it make decisions for me and that was wayyyyyyy wrong.  After four years of of living in a freaked out state, I feel much better knowing I am finally for real, doing what I think is best for me.  That is, removal of this ICD.  Of course, everyone has to make their own mind up about things.  For those who love their ICD and feel good about it, thats great.  It just isnt for me.  Have come to resent and actually hate the thing ICD.  It is preventing me from living ----- and living is what it is all about.  Not just existing.  I dont mind a few restrictions, minor life changes and that sort of thing.  But I do not want to exist as a human just because I can......   Man, am sure getting existential here...  Guess I just need to vent,,,  sorry if I offend anyone.......  Don
Avatar universal
I can understand your frustration and "no" I have not been offended.  I can understand not wanting to live with all the limitations and rules.
Yeah, I'm glad I have an ICD.  It has saved my life.  But my life is what I make of it and no I don't follow all the rules either and at times I pay for it with angina and messed up arrythmias which isn't any fun.  I think we all have some choices and sometimes I choose not to do something that I really want to do only because I will feel like **** if I do and other times I just don't care and do it anyway.

I get tired of the lousy decisions that have to be made and deciding if I want to have another test or procedure done or having to decide when I will have surgery that "might" make me feel better or "might" end up killing me.  So I do the best I can and obey the rules most of the time.  Yesterday I had another appointment with a thorasic surgeon.  He walked into the office, said Hi shook my hand and noticed that I had a motorcycle helmet on the chair next to me.  He got a little upset and asked me what I was doing riding a motorcycle and my answer to him was "living my life".  I then said that since HE had asked to see me what could I do for him.  He just smiled and got on with the visit.

I sincerely wish you guys the best and hope that things get easier for you.  I don't envy you and the position you are in as I am there too.  I think alot of us are and just need to let it out once in a while at people who really do understand what it's like.
Avatar universal
Well, my husband went to see his dr. and he told him how he felt about getting the shocks.  The dr. apologized and said that the shocks were because his pulse did get up really high..188 and he had the ICD set on 182 but his heart wasn't in danger though.  He should have set it that way but also set it to where the device determines if your heart is at risk.  His hearts wasn't at risk but since that is the way it was set then that is why he got the shocks.  Well, after a few long weeks of my husband doing nothing, he told the dr. that he wanted it out because he would rather live life as he knew it before than to live on pins and needles wondering if his pulse rate was going to get to high.  My husband is a very strong man but he broke down crying and told him that he would rather DIE right there at his feet than to get another shock at 35 jewels (which means about 840 volts)..The dr. told him to think about it and come back in 3 weeks, but only after 2 or 3 days he called the dr. office and said he didn't want to wait 3 weeks he wanted it out now.  His dr. said it was his choice because the patient has the last say so over there body.  His dr. did not agree with this by any means but there was nothing he could do about it.  So now we sit and my husband has made some changes in his life.  He has no ICD now they took it out last Friday.  He is trying to quit smoking, he has turned to GOD to heal him and he and I have faith that it can be done.  So now he is living his life as he knows it before he got the ICD and he feels better about it.  He is back to his old self and can actually feel like he can move with out being jolted.  Thanks for all the comments!
Avatar universal
Who did the removal of your husbands ICD?My mom wants hers removed but the Dr's don't agree. Hers was implanted due to a complication of chemo. And went off 2 weeks ago, but not for the reason it was implanted she has stopped living for almost 2 years and she needs to take her life back. I'd appreciate any info you can give me.
Avatar universal

Did they remove your husband's leads too?

Avatar universal
I feel real bad for the people who had bad exp with there ICD`s.   I have lived with my ICD for seventeen years.  I have had shocks of 35 joules in public and at home.  I am pretty happy to be around still at 45.  I got to see my son grow up and now I am talking about getting married. (maybe that will be my death sentence) LOL .
My heart has not got any better but I refuse to quit on life.  What I would like to say to new people with ICD`s  You got to give it a chance and you got to find a good EP.  If you are getting shocked because of wrong settings It`s your  EP fault and maybe you will need a better doctor.
My high energy shock is now at 41 joules, I do not like getting shocked but it I know it is my only protection from SCD.   I will take the shocks over death any day my family is very glad I made this choice.
What doctors do not tell you is the depression and extra anxiety that comes with the devise, Patients are expected to over come this on there own. here is a link to the best ICD support group I have seen  icdsupportgroup.org .  It is a friendly and informative site, I think all ICD patients should check it out.
  If the doc said my son or mother, sister, girlfriend needed an ICD to protect them from SCD I would want them to get it and I know both sides of the story and all the risk.
Avatar universal
I agree with kevk. I am less afraid of shocks than I am of cardiac arrest.
Avatar universal
I have had an ICD now for a few years. I been shock quite a few times. After the first ones I even had nightmares in my dreams I was being shock. They hurt! They suck! They have tramatized me. I recently got a new doctor. The last recent shock I broke my foot from falling. I'm angry.  I'm scare. The new doctor said the last shock was an inappropriate shock. Far back as he can see the other shocks were as well. As far as I understand these shocks did not save my lfe. Meanwhile my life is living in fear of other shocks. I ask the old doctor about removing it. He got very upset with me and told me I have poor judgement to even ask. We agrue for awhile. He did not understand I guess how terrified I am. The new doctor understands. She even went ahead and said that many of us people with ICD are never prepare or council for what would be in store agreeing to have one. She is so correct(what the hell was I thinking) if I knew what I know now. Today is the first time I came across these fourms that there are other people like me struggling big time. I kept thinking after all these years why am I the only one that feels this way. I could not belive that no one be asking for it to be turnoff or remove. I just could not fine any data supporting me. The old doctor told me if would very dangerous and he would no way do it. Now after reading some of these fourms it is going to give me strenght for what I need to do. Thanks
Avatar universal
Did your doctors tell you what made your ICD go off ?

I had my ICD long before I ever heard of a support group, And doctors do not have a clue of what we go through. I have had the bad dreams and the phantom shocks, I took xnax for seven years to deal with the anxiety. My first few years was the worst I was scared to do anything or go anywhere. I have learned to talk it out with my friends and family they have helped me more than any of my doctors as far as the anxiety.
I do not let my ICD control what I do, I do what I want if the doctor likes it or not. I agree the shocks suck and they do hurt but it is usually over very quickly. If you are having problems with a malfunction your doctor should give you a magnet to turn your ICD off until it is corrected. I have spoke to a few people who had to do this, My local ambulance carries one.
I hope things get better for you this is not an easy road we are on but you do have friends or people who will try to help you. You can email me any time you want even if you just need someone to vent to. GOOD LUCK !!!
Avatar universal
hi folks well this is interesting. I live here in India and get the SAME exact SAME behaviour from st jude "reps" and my doctos. my relative want his shockmaker taken out after it nearly KILLED him zapping him while he was driving (if u have any idea what it can do given traffic in THIS country you won't laugh).

it was also programmed WRONG. set to shock on any one of three conditions. in fact most doctors (electro-physio/cardio) don't even know how to fully run the programming touch screens for this box. it all depends onthe "reps" who have quite a say in this matter. imagine the market cap of tis company if word got out that patient can do fine without it!
Avatar universal
Hello all,
I am 47 y/o female an had my ICD implanted 3/2007 because of SVT
heart beat over 200bpm. 16% reg. I have been shocked over dozens of times and hate it. !!! Docs put me on Coreg and still shocked, because I have Copd and cough alot it will fire off.,Have thyroid , IBS , Rods & screws in back, Hernia and constant nausea. Put on Digoxin 2 mos ago,.to help with the heart rate, kept bruising from it so took myself off of it...BIG mistake,,, I was just shocked two times in a row HEART Rate over 253 bpm...FEELS Like dynomite blowing up my body from inside to out and see a flash of light. Even though I hate this body buddy IT DID SAVE MY LIFE,,, I believe that if you have an ICD it is for a reason,but be sure to get other docs opinions.I to do get the nightmares and the Phantom shocks, afraid to fall asleep. I Have to get an upper an lower GI next week and have to have the Cardio Docs there just in case ,Scared to go under twilight.  but can only hope all will be well. GOOD luck to all....God Bless    Christine MD
967168 tn?1477584489
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.
Avatar universal
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).
Avatar universal
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.
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
Avatar universal
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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