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British Heart Foundation
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ICD Time

Good morning everyone!

After a few months of uncertainty and a 48 hour recording of the ticker my consultant has now reccomended I have the implant asap. I'm not nervous as such just a little dissapointed that it needs to be done as I was lead to believe it wouldn't be requried by another doctor I saw a month or so ago which is frustrating! I have read on here that implants have changed peoples lives for the better but I don't understand how, the doc explained that the implant only works when required to correct the beats etc so if anyone has any insight to offer it would be much appreciated! Hope you all have a lovely Chrismas and New Year!

Jon

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Hi Jon. Quite a few of us on this forum (myself included) have a device called a CRT-D which includes a defibrillator but also acts as a resynchroniser and pacemaker and it's that side of it that can alleviate symptoms. You're right that an ICD will just monitor in the background and only act if needed.

I think they always try to fit ICDs pretty quickly once it's been decided you need one so I wouldn't read too much into that, I don't think it's an indication that your condition is worse than they thought previously.

It takes a while to get used to (mentally, I mean) but an ICD is a brilliant insurance policy that we're so lucky to have. Good luck with it all x

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Hi Laura,

Thank you for the reply and the information, most helpful :) x

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Hi Jon

I just wanted to drop you a note to say you sound like me at the beginning of this year. For 18 months, it was mentioned that an ICD was in my future but I kept being told no it's not necessary. Then things changed, as they knew more I was told this was something I needed. I struggled with this for quite a while I was set against an ICD unless I absolutely had to have it. If they had changed their mind once might they change it back? I also was frightened of it going off and the affect this would have on my anxiety and my confidence. I was resentful of having to have it at all. I was upset I would have more scars and a life of more operations. It was such a mixture of emotions. Probably 80% negative. It's ok people saying it will save my life but it's not them that have to live with the consequences of it being there. I even thought at one point I'd rather risk popping my clogs than having something in my body that can boot me in the chest at any given moment. I just hated the thought of it and felt like if there was even a small chance I didn't need it then I didn't want it. However, at the same time I was being told I was having dangerous heart rhythms and I was a risk of sudden death. It was a choice that I felt unable to make. I spent a lot of time battling to come to terms with it all. Then one day I was talking to a pacemaker technician about how ICDs work and it was fascinating. The number of hoops they go through before they shock you is surprising. They understand your particular heart patterns and act accordingly should they need to. They are amazing things. She really helped me understand that I shouldn't fear it and it is there to watch over me. I don't think I'd have an ICD today if it wasn't for that technician. I then agreed to have the ICD but having said that I still really didn't want it. I was put under general anaesthesia for my op and I was even trying to fight the anaesthetic as I didn't want to wake up with an ICD.

When I did wake up it was like a wonderful calm feeling came over me. I felt a bit of relief that the decision had been made and it was done. After the scary diagnosis, other things that had happened that resulted me facing my own mortality in the eye balls and then crippling anxiety that comes with this type of health problem I suddenly felt....OK. When I think about my ICD changing my life I think of this. It hasn't made my life physically easier as it hasn't needed to. In fact, it's taken a little getting used to but generally on a day to day basis I forget about it and it's only been in for a handful of months. What is has done is dramatically reduced my anxiety and worry and has given me back much of my confidence to live my life again, go out on my own again and be more active again. Its taken the looming black cloud away. That in itself is a significant benefit. I feel safe again. I'm glad it's there and I never ever thought I would say that.

I wish you lots of luck in your decision making process, it’s not easy and I hope this has helped a little.

Spatz76 x

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Hi Spatz76

Thank you for the advice and the insight! I've been mulling it over a fair bit of late but I'm now 99% sure that I'll have the proceedure! As petty as it sounds loosing my driving license was one of my my main concern as it will mean the daily grind is much more difficult not just for me but for the family too (Dads cabs etc!) also the thought of being hoofed in the chest with no warning is a bit off putting too!

On reflection though I'm pretty sure they'd cancel my license for good if I was dead so there is that :)

Jon xx

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Hi Jon

I'm really glad you're getting closer to that final decision. If my experience is anything to go by you won't regret it.

It doesn't sound petty to me at all regarding your driving licence. I felt exactly the same way, resentful even. Not driving is an inconvenience to you and your family and you feel like your independence has been temporarily stolen. Driving is a luxury I honestly took for granted. However I was lucky, I've only needed to abstain for a month so far and actually that went really quickly. The only positive I could find is that I could get a free bus pass for the time I was car-less. :) I hope that however you manage the time you are car-less that it goes quickly.

Steph x

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My ICD is coming up to its 5th birthday. The implantation was done under a local anaesthetic and the procedure was brief and painless and I had no pain afterwards. It's just part of me now- I can see it protruding a bit under my collar-bone- it's the size of a box of Swan Vestas. The great boon for me is that I live 50 miles from the cardiac unit. On a regular basis Usually quarterly or when they ask for it, I transmit (basically down the phone) its most recently stored activity and, the battery life data. This saves me a hundred miles round trip AND the hospital parking charges. The tech team can read off my recent history- the occasions when the machine has stepped in to regularize my heart-beat or other adjustments. As I suffered a full blown cardiac arrest and was lucky enough to do so near to a defibrillator and people who knew how to use it, it's comforting to know that I have (and soon you will have) a very high tech, built in defibrillator which I know can't make me immortal but gives me more confidence. Things like ICDs are where medicine is going. And God bless the NHS for implanting these fairy godmothers. When I looked up the price of machines and their implantation in the USA about 4 years ago, they cost about $150,000! Have a great Christmas.

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