REMOVAL OF ICD

[lenon]

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

[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!