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British Heart Foundation
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ICD

Hey everyone - I got diagnosed with hypertrophic cardiomyopathy June last year - had various tests and been told I don’t need a heart transplant now but need to be monitored and reviewed each 6 months.

My specialist now has come back and said I need an ICD installed - whilst it’s not an emergency they want it done sooner rather than later.

Does anyone have any experience of having one installed, recovery time, how they feel? Would be great to talk to someone about it.

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Hi I've got cadiomypathy n had a icd fitted still working full time was of work 6 weeks when had it fitted

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Yeah that’s what they said 6 weeks need to be off. How long ago was that? You mind me asking how it feels?

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Jan 2017 sore at first it feels weird for a bit but I suppose you get used to it lol

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Hi

I too was off 6 weeks. The operation was a bit of a blur to be honest... I can remember certain bits of it.

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I had one fitted in October 2016 after collapsing with a heart rate of 230, I was in the cardiac ward for 2 weeks being monitored and then it was fitted. The op was a piece of cake, just a local and I watched it all on the monitor. My worst fear was that I was told that I couldn't drive for 6 months and being quite isolated where we live (inland Southern Spain) and the wife doesn't drive. However I was back on the road after 3 months with no problems.

One inconvenience that wont apply in the UK, because I drive a LHD car the seatbelt goes straight over the ICD so I have plenty of padding on the belt to make it more comfortable.

I run 3 walking groups and I was back walking with them after 3 months and whilst I have been told 'no more hill walking' I lead about 75% of the walks (it's very mountainous here).

I have just had my 6 month review and everything is fine and now the arrhythmia clinic doesn't want to see me for 12 months, so that's a bit of good news.

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Glad you're getting on well. I got special padded seat belt covers to use over my mastectomy scars & still using them 28 years later! Can get them in pound land & other cheap shops as well as car shops. The shopping centre at Coin might have them if you're near there. And the Chinese bazaar shops in any town in southern Spain.

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Thanks for the replies so far. My thing is I’m 35 and haven’t had an increase / change in rhythm since this was all discovered - they are worried as I’ve fhl1 genetic mutation and other people with this have had problems - so they want me to have it. I just want to maybe know the impossible question of do I really need it and can I delay putting it in as I’ve been given the opportunity to go to a Greek island this summer on a working holiday which clearly has its appeal compared to bring out of action for 6 weeks.

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Thanks Jo - yeah they’ve said they’d like to have it done sooner rather than later and of course asking more questions etc just trying to get my head around it all and struggling with the reality of it and the fact that I haven’t had any significant symptoms since fainting last year which they haven’t 100% confirmed is related to the condition. Will keep asking questions... thanks again for taking the time to reply.

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I also have hypertrophic cardiomyopathy and angina & was told not to go to hot or cold places. So Greece in summer is much too hot for me. Not even allowed in a jacuzzi or sauna.

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Morning jeder i had mine fitted in 2015 after a really bad day with my swinging brick.i was ist in theatre that day it took around a hour and half you are awake throughout could not see anything due to hygiene sheets up I had somebody talking the whole time to me because I was petrified.all I felt was them putting it into place and fishing the 2 leads in.i was having a cuppa at half ten in recovery room.that afternoon I was sat on my own settee I spent a couple of weeks in our spare room so the wife did not get disturbed or knock it because I had to sleep on my back.a fair bit of brushing nowt major just don't pick anything up with the side it will be on.after healing look into what you carnt go near ie magnets don't put mobile phone on same side.mine is a Medtronic and have a bed side monitor.trust me it's sore to start but it's just a lump that sticks out of your chest abit.annual check ups I have 7 years before battery change.truthfully if I was offered a tooth out or a icd fitted I would have the icd

Good luck you will be fine trust me

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Thanks so much - really appreciate you taking the time to write. Pleased it went so well for you.

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Hi jeder

I would second Jo's advice on this and take the opportunity to have it done preventatively asap if I was in your shoes - if your medical team deem it necessary

I'm 29 so quite young like you, but had a cardiac arrest out of the blue 7 to 8 weeks ago. I had an ICD fitted 3 weeks later, so currently on the mend from that. And i am going on holiday in late June :)

If the ICD is going to give you more of a fighting chance should things deteriorate quickly then i say get it in as quickly as poss. Setting my own worries aside, i want to do all i can to spare my loved ones another intensive care visit.

Good luck xxx

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Thanks Alice - sounds like you’ve been through a busy few weeks. Really appreciate you sharing what’s gone on for you. Helps put things in perspective for me. Good luck with everything your side and enjoy the holiday!

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No worries at all. :)

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Also i would add that it is case by case. E.g. my op was under general rather than local and the op took a little longer than others describe here. My recommended time off work is 2 to 3 months, so longer as well. I think this is likely because mine was post cardiac arrest rather than prevention/planned so i have other symptoms to manage that are to do with broader recovery. I am feeling stronger though, and the icd is much much less visible than i expected. Xx

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Hey, I have an ICD too, have had mine for about five years now. I had hoped to be back at work within a couple of weeks but ended up being off for about six weeks. You've got to be careful not to dislodge your wires in that time, plus I was tired and sore and looking after an 18-month-old! Also, took me a while to get my head used to my new situation. Now I barely think about my device at all. I'm reassured to know it's there, but I can't feel it anymore and can sleep comfortably in any position and generally get on with life. I've got a small scar and a barely noticeable bump. I just need to get my device checked every six months - so far no problems and plenty of battery life left, even after five years.

You've been prescribed this treatment because your condition means you are at a higher risk of cardiac arrest. Ultimately, it's up to you, but I don't think I could enjoy a holiday knowing my doctors thought I might have a cardiac arrest - survival rates for that, outside of hospital/without an ICD, are VERY slim. Definitely talk to them about your options and the benefits/risks. Could be that missing this one holiday means you're able to live long enough to enjoy many, many more?

Feel free to message me if you have any specific questions and good luck, whatever you decide.

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Thanks Laura - really appreciate your answer and help understanding more about the process and situation. Will keep this all in mind. X

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Hi . I personally think having the ICD fitted asap is more important than going to Greece

Let be honest when you are feeling better you can go there anytime. Good luck

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hiya, I haven't had one myself but my sister has and said it is the best thing ever. She has energy now where she never before and to her it is also a safety net and couldn't imagine life without it. If it needs adjusting the hospital can do it via computer which helps with fatigue etc. I have Cardiomyopathy myself and if given the option would jump at it

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Hi Jeder, I just came across your post about ICD. Have a look at my post of a couple of minutes ago regarding my device and you will see why I would urge anyone to just go for it!

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Thanks Alex it’s all in on the 20th December, recovering well and skiing this week! Thanks for the useful post and encouraging others. Taking a bit of getting used! Look after yourself!

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Glad to hear this Jeder, it's like having your own little paramedic in your top pocket. My daughter calls my device Frank, as in Frank Zappa 🤣

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Yeah someone else said it’s like my buddy that I like the idea of!

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