Have you got an IED?

[Joyride]

I have been recommended to get an IED but I'm reluctant to do so because of the risks and complications associated with them especially but limited to inappropriate activation. I would love to hear from anyone who can give me a overview what it like to live with such a device.

[Lezzers]

IED???? Do you mean an ICD?

[Joyride in reply to Lezzers]

To me it's always been called as an IED, implanted electrical device, but the same thing may be know by other acronyms too.

[Lezzers in reply to Joyride]

There's different types of implantable devices. Pacemakers, ICD's or CRTD's. My husband has an ICD, after a while you get used to it being there & he isn't really aware it. Yes, things can go wrong, infection, inappropriate shock etc but one day it may also save his life, he has had a previous cardiac arrest. We look at it as his own built in paramedic.

[Joyride in reply to Lezzers]

That's helpful. How often does he get an inappropriate shock and when he does, what is it like? Is it debilitating or annoying? Has he ever had one whilst driving?

[Lezzers in reply to Joyride]

He has never had an inappropriate shock & he's had the ICD since 2012. There is a Facebook group called ICD/CRTD support group uk. Might be worth your while joining it as there will be some who've had appropriate & inappropriate shocks and would be able to tell you what it's like. However, inappropriate shocks don't happen as often as you would think & if it does happen I'm sure it's just a case of the ICD clinic adjusting the settings. I do know the ICD has corrected my husbands heart a couple of times!

[MichaelJH Heart Star in reply to Joyride]

Sorry, maybe my response was a touch aggressive. To me an IED is an improvised explosive device. I know some guys who were out in Afghanistan and a friend's brother was killed defusing one!

[MichaelJH Heart Star]

Hello and welcome to the forum! Obviously an ICD otherwise we would have to defuse you - outside the scope of most cardiologists. My niece's father-in-law and had one. Without it he would have died in January but instead is holidaying in the sun. There is obviously a reason for fitting one. It causes him no bother.

[SpiritoftheFloyd]

I can't comment on how life is with an ICD, but I'm having one implanted in 2 weeks time on Monday 19th August so will be watching this post with interest to see what comments there are.

I'm fairly relaxed about the pros and cons:-

the cons being I can't drive for 6 months, and if i get a subsequent shock, again can't drive for 6 months, and the issue of inappropriate shocks

the pros being that as I've already had a cardiac arrest and have heart failure, without an ICD if I develop an arrhythmia i'm likely to have a further cardiac arrest, the first one happened during my heart attack while I was in the hospital, any future arrest would probably not be in the confines of a hospital so I'd probably be toast - to me the decision is a no-brainier!

[Driver11]

Hi I am 64 and quite healthy until a cardiac arrest last September. Never thought I would have an ICD fitted - never really knew about them . My life is back to normal and doing most of the things I did before. My ICD has not operated since being fitted and you learn to live with it - good luck and don't worry

[Dolphin14]

My husband had an icd many years ago. It fired quite a few times. Saved his life.

He had one fire that was inappropriate.

Bottom line is if it fires once appropriately it has saved your life.

I have a brother in law who refused to have one placed for over two years. In my eyes he was a ticking time bomb. He didn't follow many rules that he should have. He now has the icd placed and still isn't following the rules. He's in his mid 50's. He's doing a great job risking his life span.

[17Nevil]

I had a crt-d fitted nearly four years ago .

There was absolutely nothing to it .I was conscious and watching the wires being moved inside of me on a large screen .

If they think you need it the benefits far outweigh any very slight risks

[Joyride in reply to 17Nevil]

Thank you for your reply. Over the last four years, has the device given you a shock when it was not required? Also, after the first few weeks, has it occasioned you and pain or discomfort?

[17Nevil in reply to Joyride]

Hi,

No it hasn't and I don't think that that is a very common occurrence, the surgeon demonstrated it to me while he was installing it .

After extensive consultations with my doctors I have now had the defibrillator part turned off but the resynchrysation part is still working .

The reason for that is that I am considered" end of life "

[FeetheBookworm]

I had an ICD fitted a couple of years ago. Had an infection initially but once that cleared up there have been no problems. You can’t go through certain scanners when travelling - and going to concerts at some locations. You also need to notify DVLA and car & travel insurers. Keep your card on you at all times.

[Alison_L]

I've had my ICD for 13 months now. No inappropriate shocks. It paces me when my HR drops below 40 (because of meds), but I can't feel it pacing. I am aware of the actual device - it stands up at night when I'm lying on my right side, and has to be patted back down again, and I feel it when waving my left arm around generally. As with everything, it's different for everyone, but if the docs think you need it, then why turn it down?

PS Please don't get an IED. That would definitely give you an inappropriate shock!

[siouxbee19]

I've had 2 ICD's since 2009, a Reveal monitor before that. I've never been shocked, inappropriately or appropriately, but if I ever needed to be, I would be very thankful for my device! I feel strongly that any benefit greatly outweighs the risks, and I would advocate for anyone that truly needs one to get one. I begged for one for 5 years, before the doctors finally got their act together and agreed. This after all my symptoms and family history! By the way, I was young back then, late 30's, so this isn't just an older person's issue, for anyone else reading this.😉

So best to you whatever you decide, keep us posted! 😀