can you have one turned off or removed

I had a icd put in jan 9 2012...It is horrible...I was out last night and had danced some which i have done for years..and it shock me 4 times in a row...I do not ever want to go thru that again ...it was horrible you yell out and it hurts so bad like a lightning bolt of electricity...I would rather take my chances....Can it be capped off or can the defib be turned off..it is a boston scientific ICD...I think I would just stay in my home forever if I have to worry about it shocking me again out in public
It may need adjusting but I still dont want the defib...please has anyone ever felt this way and had it removed or capped off...the emts came out and checked it and said it was doing what it was suppose to do..so that means I cant exercise or anything without it going off...I will be crazy worrying about going anywhere or doing anything let alone driving anywhere..Its not good to let something rule your life like this please any comments or suggestions...I have a EF of between 25 and 30% and a LBBB...I had an ablation in oct of 2011 for WPW ..The dr said I Had a choice of a pacemaker alone or a ICD Which ever I Chose..I Picked wrong....

10 Comments

I do not have any experience with

by janetinak - 2012-02-06 04:02:48

an ICD as have PM. But I wonder if you could talk to the doc who said you have a choice & get the PM now & have the ICD either adjusted or taken out?

I'm sure you'll be hearing from those with the ICD's here.

Hope you get feeling better soon,

Janet

Agree

by Sue H. - 2012-02-06 04:02:58

with Patch.....you need a new doctor. Find one fast. No good well trained doctor would give a patient that kind of option. You either need a defib or not and from all the tests that should have been done, he should make that kind of important decision and give you the reasons why. Please keep in touch and let us know how you make out...and you should be able to dance, shop, do all the things you love to do without the worry. A pacemaker/defib. takes all that worry away so you don't have to worry....get it adjusted properly so you can go about living. Life is good!! Sue

Would you rather die?

by Marty - 2012-02-07 01:02:20

This is the key question. If you have an ICD, you ostensibly met the criteria to receive one, else the insurance would not have paid. Has the device been interrogated yet to find out if these shocks were appropriate or not? If they were appropriate, you need to decide whether you'd rather be shocked or dead.

If they were inappropriate, your device needs serious adjustment or replacement immediately.

Make them get it right, but don't kid yourself - if you need the ICD because you're at increased risk of sudden cardiac death, getting rid of it could be a fatal decision.

All the best.

Because it shocked you

by howdoyoumendabrokenheart - 2012-02-07 11:02:35

You are alive. If it didn't, chances are you would not be around. They don't defib for no reason. I don't think your doctor really gave you a choice of pacemaker or ICD. If so, I agree, you should have another opinion ASAP. There is just no way they could be so cavalier with such a device. You should also ask if it is OK to dance up a storm. You have to pace yourself and adapt and be ready for some lifestyle changes. I'm brand new to this, but already I realize that things will not be the same, but they can be OK, if I am aware of what I can do and cannot do. Do whatever you think you can, but once you get tired STOP. 25% is serious I think. Imagine anything, your washer, dryer, computer, car, telephone, tv or anything just working 25%. Most things just won't work at all.

PM turned off or removed

by Fluzy Suzy - 2012-02-07 12:02:00

Just a small note to say my son had one implanted April last year and first couple of night, he woke with like an electric shock, and made him feel really poorly. He was told that it was his pm with defib. He asked about having it turned off and they did so. Apart from that he is doing well. We live in England, maybe other countries think diffeently

Take care

can a defib be turned off

by anniesu - 2012-02-07 12:02:24

Thank you for all the comments...about turning the defib off...I think I said wrong about what I have it is a CRT-D .And the dr did say I was candidate for it..but he said do I want just the pacemaker or did I want the combination...He just failed to say the defib can cause inappropriate shocks...even after adjustment it can still happen..Im saying after the four I had I cant live with worrying if it is going to malfunction again...I realize it can save your life but at this particular time with just the beginning symptons of any heart failure I just feel it needs to be shut off...I will take my chances...Thanks for all the imput on this subject

It shocked me

by anniesu - 2012-02-08 03:02:07

The reason it shocked me was because it wasnt set right...I know you have to pace yourself...and I would have still been here because the defib was set wrong...It was a terrrible experience when I didnt need it..evidently you have never been shocked by one....Yes it would save a life but I do know that even if they have been programed sometimes you can get a inappropriate shock and when that happens you could be doing nothing and get knocked to the ground , walking , in church anywhere and believe me like I said it is very painful.I do know what I can do and what I cant and I wasnt dancing up a storm..I have been dealing with a heart problem since I was in my early 30s and believe me I do know how far I can go with doing things...I appreciate your input on this but things were not set right
and the dr did say I could choose between the pacemaker and having both...it was my choice..I was just a candidate for both or one...I also have alot of friends with pacemakers that do dance for the exercise and it doesnt bother them and they get their exercise that way...One fellow is 91 Just saying you can have a good life with both if things are programed right I have my appt tomorrow to get this all figured out...

Update on Crt-d

by anniesu - 2012-02-08 11:02:38

I had my dr appt today concerning the inappropriate shocks I received last sat....I found they were not called for it was set wrong and has been set up different now...I found I could have it turned off and the pacemaker would continue working...But the dr ask me to trust him {actually different one than who put it in} and give him a month and me on different meds and it on different settings.If at the end of the month I still want it turned off I can have it done...So I am willing to try but one more problem with or shock I will have it turned off and leave the pacemaker...Thanks for all the input on this subject

to Marty

by anniesu - 2012-02-09 01:02:06

Thanks for reaponding Marty...I actually read on another site that one fellows went of 56 times before it stoped and it was inappropriate shocks..Now that would be horrible....Im just praying for the best...Im justing trusting the Lord and my Dr ....I do know Coreg affects me so much that im eager to try the new meds...were your shocks needed or inappropriate?? and you do know what they feel like...Good luck to you .

anniesu

Good for you!

by Marty - 2012-02-09 01:02:44

I'm so glad to hear you're giving this a little more time. I've been shocked four times, and I understand your feelings about it. Just remember that inappropriate shocks happen only a tiny fraction of the time compared to what they used to, and prepare yourself for a month of NO inappropriate shocks. That's what will most likely happen, and you'll begin to feel differently about this device that can save your life.

All the best to you for your courage,

Marty

You know you're wired when...

You have a new body part.

Member Quotes

I swim, scuba, garden, hike, climb, workout, play with the kids, play tennis, baseball, basket ball and rollerblade with mine with no problem.