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?

[BionicBabe]

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

[mommakris]

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????

[BionicBabe]

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!

[BionicBabe]

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.

[Don349]

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.  

[Sirenet]

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

[pusher]

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.

[Don349]

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...............

[Sirenet]

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.

Don-
   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

[Don349]

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

[pusher]

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.

[mommakris]

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!

[anettemn]

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.

[BionicBabe]

Did they remove your husband's leads too?

[kevk]

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.

[BionicBabe]

I agree with kevk. I am less afraid of shocks than I am of cardiac arrest.

[mscamaro]

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

[kevk]

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 !!!

[kalmer]

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!

[Christine934]

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

[Mom2four85]

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.

[Dennistoo]

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).

[Nelly1226]

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.

[sporty79]

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.

[Gm0406]

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

[wlwilliam213]

can thay take out my icd and leave the wires

[wlwilliam213]

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

[wlwilliam213]

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

[drak]

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 (ablation) a good option when given the choice?  I have lots of questions....

[hurricane1121]

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.

[jim320]

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..

[taken1111]

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?

[Mom2four85]

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 =)

[BlueKnight007]

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

[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!!

[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

[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.

[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

[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.

[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.

[jrbon]

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

[Jifizap53]

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.

[flea1972]

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:)

[flea1972]

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:)

[jrbon]

Just curiosity... what the reason was to get it removed?

Jesus

[jfresh31]

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

[jfresh31]

I am also from NJ and would really appreciate some advise on the topic thank u

[Tickman]

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.

[getitout]

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















"

[getitout]

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 ......

[delydarren]

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.

[grendslori]

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!

[plsremove]

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.

[rjm1959]

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

[azzllin]

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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