Emotional response to an ICD

[Jam-maker]

Good evening! I've just joined this online community. I had a pacemaker fitted this time last year and have just had it "upgraded" to an ICD. This was in response to an instance of ventricular tachycardia that showed up in a regular pacemaker clinic check. I'm learning to partner with this new device but have found myself quite anxious, especially at night. I have a jumble of thoughts going on: I know that if the device administers a shock it is probably because it needs to and that must be a good thing. At the same time, wondering what a shock will feel like is rather unnerving! I'd just be interested in the experience of others getting used to an ICD. Thanks!

[Lezzers]

Hi jam-maker my husband has had an ICD fitted since 2012, fortunately his has never had to shock him but it has corrected his heart a few times. I really do understand your worries, my husband had it fitted as he has had a previous cardiac arrest and has HF, he's pretty laid back about it, I'm the one who has the sleepless nights. There's a Facebook group called ICD-crtd support uk which may be of interest to you, for advice and support.

[Jam-maker in reply to Lezzers]

Dear Lezzers

Thanks so much for this and for your understanding. All very helpful. I'm glad to hear your husband hasn't needed a shock so far and long may that be the case. I hope you sleep well tonight!

[SpiritoftheFloyd]

Hi Jam-maker

I've just had an ICD implanted 2 weeks ago. I had a heart attack on 28/12/2018 and went into cardiac arrest while being admitted into hospital. The consultant subsequently told me that the Echo showed I had an EF of 30% and had heart failure.

A further Echo showed no improvement and in April I was told that as I was at risk of getting an arrhythmia some time in the future which would probably trigger a cardiac arrest, they were proposing that I have an ICD fitted.

When I spoke to the consultant and to nurses in cardio rehab they all mentioned the issue of being anxious of the device delivering a shock, but as they said, if it should deliver a shock it's saved your life, without it there's a high probability that you would not survive. So yes, I have wondered about it shocking me at some point, but I am reassured by the fact that if it does it will save my life, without it who knows?

Having been told I was at risk where I wasn't aware I as at risk, having an ICD was an easy choice to make. I think of it this way, I had no idea I was going to have a heart attack so never thought - what if I have a heart attack? I'm applying the same strategy to having a shock - I've no idea when I might get a shock so I'm not going to think about it.

I hope you're able to settle into a comfortable relationship with your in-house paramedic. Best wishes

[Jam-maker in reply to SpiritoftheFloyd]

Dear SpiritoftheFloyd

Many thanks for sharing your story and of course you are absolutely right about the "in-house paramedic"! Your upbeat approach is helpful to hear and I'll seek to emulate it! All the best for the future.

[Heartofsoul in reply to Jam-maker]

Hello jam-maker

My icd was done august last year and I do remember I was so anxious about getting a shock,how would it feel? The doctors had all told me I'd definitely know if I had recieved one as it would feel like I'd been pushed by someone, a thump to the chest. I did a lot of research online I think just trying to reassure myself. Anyway after a few months I didnt really think about it or let it bother me. You realise it's there to help you ...well save you!! Quite a few times though the icd had to pace out my rhythm as kept having fast arrhythmias and clinic noticed this from the monitor at home and would call me up,so rst assured in the fact I was being looked after . I hope all goes well for you with this device and like me you end up not giving it a 2nd thought.

[Jam-maker in reply to Heartofsoul]

Dear Heartofsoul. This is an extremely belated reply but I just wanted to thank you for your encouraging and helpful message in response to my post. It’s been really good to hear of other peoples’ experiences. Thanks for taking the trouble to reply and all the best for the future.

[17Nevil]

It is extremely unlikely that it will give a shock it is regulating his heart to prevent the need for a shock . I had multiple cardiac arrests four years ago and I also have an icd fitted. When they were fitting mine before they closed me up they tested it to show me what to expect

[Jam-maker in reply to 17Nevil]

Dear 17Nevil

Many thanks for taking the time to reply to my post and huge apologies for my very belated reply. I have taken great comfort from hearing about other people’s experiences. All the very best for the future.

[Driver11]

Hi, my ICD was fitted a year ago following cardiac arrest. You learn to live with it and most of the time you forget it's there. Can't tell you what a shock is like but knowing its your insurance gives you some comfort

Good luck

[Jam-maker in reply to Driver11]

Dear Driver11

Very many thanks for taking the time to reply to my post. Please forgive me for taking so long to reply. I’m learning to live with my ICD and have found it very re-assuring hearing the experiences of others. All the best for the future.

[laura_dropstitch Heart Star]

Hello. I've had my ICD for...six years or more? It does take time to get your head around it and it's only natural to be anxious at first. Now I really very rarely think about mine at all. Here are a few links to previous posts about ICDs, might be some useful comments in the responses. Most people with ICDs are very positive about them in the end. Good luck!

healthunlocked.com/bhf/post...

healthunlocked.com/bhf/post...

healthunlocked.com/bhf/post...

healthunlocked.com/bhf/post...

healthunlocked.com/bhf/post...

healthunlocked.com/bhf/post...

healthunlocked.com/api/redi...

(That last link takes you to ICD info on BHF website, which you may already have seen.)

[Jam-maker in reply to laura_dropstitch]

Dear laura_dropstitch

Thank you so much for your really helpful and thoughtful reply to my post. Please forgive my own very belated reply. It’s been very helpful hearing how others have adapted to life with an ICD so thank you for taking the trouble to let me know if you’re own experience. All the best for the future.

[MichaelJH Heart Star]

Think of it as your friend. My niece's father-in-law's fired earlier this year. He was unaware of it as he had collapsed. Without it it would have been game over! The six month driving ban was frustrating but he now has a new car and has been on a cruise. I hope yours is back up and never fires for a very long time. All the best, Michael JH

[Jam-maker in reply to MichaelJH]

Dear MichaelJH

Many thanks for responding to my post and huge apologies for only managing to thank you now. Your account of your niece’s father in law’s experience is very encouraging so thank you for taking the trouble to pass on his story. I hope he is still doing well! All the best for the future.

[MichaelJH Heart Star in reply to Jam-maker]

Thank you, yes he is. I saw him three weeks ago...

[Wight1953]

Jam - maker. Cardiac arrest in 2012 after 10 years of Dilated Cardiomyopathy. Fitted with CRT-D. Over the next 4 years had 15 shocks increasing in frequency. Always when I was at complete rest / asleep, ( and usually during a period when I had cough/cold symptoms) . Usually felt faint passed out, then aware of bang in chest, and then OK. Not pleasant but as every one says 'it did its job' Towards the end of the 4 years was feeling pretty low and was referred to Papworth for a VF ablation process( Feb 2016). Been shock free since and returned to driving. Who knows what the future holds, do sometimes find it difficult to be positive about the long term.

[Jam-maker in reply to Wight1953]

Dear Wight1953

Many thanks for your message. You’ve obviously been through quite a lot! It sounds as if you are now doing well so I hope that continues. Many thanks for taking the trouble to respond to my original post. All the best for the future.