British Heart Foundation

Defibrillator advice needed

Hi everyone I’ve been told by cardiologist that I have severe heart damage and may need a defibrillator implant. I’ve been lead to believe this won’t make me feel better like a pacemaker, it’s just there in case my heart decides to call it a day. Anyone already had defibrillator implanted tell me what it’s like, is it quick and easy procedure? And do you feel better since having it done? Guess it will make me less anxious, I’m always thinking what’s going on with my heart, will it just stop without warning? The slightest twinge or stitch in chest area and I think, oh no is this another heart attack. Guess a lot of people on here are anxious like me, even after couple years I’m still anxious.

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I've had a icd fitted got heart failure it didn'make me feel any better but it's there just in case 👍👍👍

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I had one fitted in October 2016, I didn't even know that I had a heart problem until I collapsed following a hill walk. The operation was under local anaesthetic and in fact I watched the surgeon fitting the wires into my heart on the monitor (of course you don't have to), it took about 20 mins. I had the op at mid-day on the Monday and was discharged the next day, but that was after 2 weeks in Hospital.

I know that mine is there and it's quite visible and I have had to make a few small lifestyle changes but that's because of the heart problems not the defib.

So far mine has not gone off and I think that it's more as a backup but the pacemaker part of it has operated a couple of times to bring my arrhythmia under control, but I was totally unaware as this happened whilst I was asleep.

It's took me a while to get used to it but after 15 months I just accept it and live with it.

I live in Southern Spain and was warned not to let direct sunlight onto the implant site, and I have to say that the damn thing does seem to 'heat up' in the summer, but you won't have that problem in the UK :)

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Hi Alan thanks for your reply. Best wishes Graham

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I’ve always had a defibrillator. I had one planted as a baby. Had to have it replaced loads of times and no issues.

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Hello Graham - we have a video on our website of someone having an ICD inserted if that's of any interest to you: bhf.org.uk/heart-health/tre...

Most ICDs that are implanted have full pacing functions too, so it might be worth asking what type of ICD you're having fitted.

Hope this helps,

Chris

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Thanks Chris

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Hi Graham

I've had my ICD for 4/5 months now and despite months of refusing to have one I'm so glad it's there now.

The procedure is very quick, I was put under general anesthetic so don't remember the op but I left hospital within a few hours of coming round. There is discomfort for a a couple of weeks afterwards while your healing and a few twinges whilst it's settling in but it settles down pretty quickly. That's been my experience so far.

I've mentioned in previous posts on the forum about my feelings once my ICD was implanted. I felt totally calm. I, like you had a lot of anxiety. I felt every eptopic beat, irregular heartbeat episodes and caused myself palpitations. I thought I was going to pop my cloggs every time my heart went fast. This isn't great when anxiety causes your heart to race. 🙄 I would say 90% of my worry disappeared the day I got my ICD. I'm now finally getting my confidence back. So do I feel better for having it, definitely.

Mine also paces my heart because it's predominantly a bit slow but in terms of how it feels to have one, I can't feel it working at all. I can obviously feel the physical implant but I'm lucky mine doesn't stick out of my skin or anything.

I was scared of getting an ICD but it's been a positive experience so far.

Any questions please just shout.

Spatz76 x

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Hi Spatz76 thanks for reply glad to hear you’ve had a positive experience with icd. I’ve been told that I’d only be given local anaesthetic apparently they don’t like to give general maybe it’d kill me or something. Anyway I’ll trust the experts and hopefully I’ll have a positive outcome like you. I see cardiologist again in February so will find out more then. The NHS have been brilliant. Long live the NHS Best wishes Graham

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Hi Graham. I had my ICD fitted under local anaesthetic...and rather a lot of sedation! My procedure didn't go entirely smoothly so took a bit longer than expected but it was really OK even so. I was in hospital overnight, home the next day.

The first six weeks or so can be a bit frustrating as your arm movement is limited until the wires have settled in securely, but longer term it really has no negative impact at all.

Like Spatz, I feel really happy to have my ICD now. So far (nearly five years) I haven't needed to be shocked but it is so reassuring to know it's there if/when I need it. I'm sure you will feel similar once you've had time to get used to it. Like you say, long live the NHS, we are so lucky to have the care they give us.

Good luck with everything :)

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Thanks for reply Laura, just anxious of what lies ahead. Best wishes Graham

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Hi Graham

Yes they normally don't like to give general. I think there's always a risk involved with using it. I was allowed it because I'd had a very bad experience in 2016, with a procedure going wrong. Then early last year I had a pacemaker implanted and was under sedation for that but had a bad reaction to it. I was poorly all day following the procedure. So I think they thought I'd been through enough by the time I needed an upgrade to an ICD three month after that. I was pleased I have to admit.

Good luck with everything x

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Thanks i will just be brave and keep my eyes closed lol. Take care.

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Don’t be hesitant to ask your doctor about how many if these has he implanted and how his patients lives changed. You want a doc that has experience doing the procedure. A doc that does implants on a regular schedule is more experienced and proficient in the procedure and has the best up to date knowledge either by training or experience. Take charge of your body. Many cardio docs will refer you to someone who is a specialist in icd implants. Good luck - as Churchill said - there’s nothing to fear but fear itself. And that goes for us caregivers as well.

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Hi Graham.

The first thing to ask is which type of device they are thinking of fitting. There are two. One is fitted with a wire (or wires) which go into the heart. This is capable of pacing the heart as well as cardioversion and defibrillation and is called and ICD. The second type does not pace and is less invasive as no wiring goes inside the heart. It is called a S-ICD. which stand for Subcutaneous implantable cardioverter defibrillator. The makers of these devices have a helpful web site:

bostonscientific.com/en-US/...

If you are not squeamish there are videos of the two type of procedure.

It is natural to be apprehensive about having one of these fitted. Think of it as having your own ambulance with you 24/7.

My partner had two cardiac arrest just before Christmas and luckily I am a trained medic so CPR and a fast ambulance saved his life. He had an S-ICD implanted two weeks ago and is doing well. The procedure was done under a GA not a local. The wounds have healed and he is gradually settling back into a normal sleep pattern. As he had a cardiac arrest he cannot drive for 6 months. If you have one fitted you may not be able to drive for a short period but the staff will advise you. You will be given lots of support by the team and told all the dos and don'ts. Which to be honest are not that many.

I hope this is helpful to you but let me know if you need any other information.

Good luck Ron.

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Hi, thanks for interesting reply Ron. I’ve only been told it would be a defibrillator so not 100% sure of type. Just want to get it over with been through so many tests since HA all gets bit inundating. Guess no mater what they do to me the damage is done best I can hope for is stable heart rate. The heart will still do it’s job with little intervention even with the damage done during HA but no running marathons. Best wishes Graham

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