Hi my partner had a massive heart attack in December he shouldn't be here but he survived thanks to brilliant and rapid care from paramedics his trop level was in 6 figures!!!
He saw cardiologist in June who we are still waiting to see for a follow up appointment after having cardiac MRI and 24 ECG to see if the cardiologist thinks he needs an internal defib.This is very scary waiting as I feel we are living on a knife edge.
Can anyone offer advice on having and living with the device he's a plumber and only 52.
Hi Alison- sorry to hear you're feeling anxious about your husband having an ICD. I think there are a few people on here with ICD's so hopefully they'll be in touch. We have a few threads where people have discussed ICD's here: healthunlocked.com/bhf/post....
Hi. I had an ICD fitted around 4 years ago. I was really anxious and upset beforehand and for a few months after while I got used to it but now it doesn't bother me at all and in fact I feel really reassured by its presence. Maybe I'll never need it but it's right there if/when I do.
The procedure of fitting it is really not too bad. I was sore for a few weeks afterwards, but no lasting pain. Now I have a quick check every six months (takes 5 minutes and is really straightforward) but otherwise don't give it much thought at all.
I can't go through the metal detector in the airport so have to go in the X-ray machine or be patted down. Otherwise, there's nothing I can't do. Lots of electrical equipment recommends people with pacemakers don't use them, but it's mostly OK. My consultant basically said not to hug the microwave or carry my mobile phone in my left shirt pocket! From memory, I think there is a type of welding machinery that really must not be used, not sure if it's something plumbers would use? But overall, the ICD should just provide a safety net that works in the background and your husband will be able to get on with his normal life.
Hope that helps, feel free to fire any questions my way. Best of luck with it all.
Sorry, just to add that my ICD has a combined pacemaker, so most of the potential issues I outlined above might not apply to your partner. I think ICD is not affected by electrical equipment in same way that a pacemaker is, so even less to worry about! Honestly, having an ICD is great, just a comforting insurance policy.
I’m sorry to hear of your husbands health, it’s a worrying time but he’s in the best hands. I thought I'd share my experience with you and hope it helps.
My ICD is relatively new at 6 weeks old yesterday. I had a very rocky road getting to accept the need for my ICD, when it was confirmed I was upset. For me it was confirmation that I wasn't getting better, my heart issues were for the rest of my life. However even then I resisted it right to the last minute. I was literally attempting to resist the general anaesthetic and trying to keep my eyes open (It makes me chuckle to think about it :)) I just didn't want to wake up with an ICD.
I saw all the negatives and the positives were taking a back seat. I reached out on here for some reassurance and got some lovely positive and supportive replies which were really appreciated but in my mind, I still couldn't really stop thinking about fear of the ICD going off, people treating me differently, not being able to drive and a whole other set of rational and indeed irrational fears.
The day of the op I was put under general anaesthetic which was great. From the moment, I woke up I felt calm and reassured, it was a strange peace that I wasn't expecting to feel at all especially as I was so resistant right up to falling asleep. I'd battled through anxiety about my mortality due to my risk of SADS because of my condition and it had definitely affected my confidence over time, 24/7 hypervigilance to heart arrythmia is not fun. With my ICD implanted I immediately grew in confidence from nowhere. Before, I'd be in a social situation and I knew where the nearest hospital was and where the first aiders were and I kept getting anxiety pangs of what ifs and scared myself out being "in the moment" enjoying myself. This was sadly a regular occurrence. Now, 6 weeks on, when in similar situations I now don’t need to think about hospitals and first aiders, yes, it’s still early and I still get an initial pang of anxiety but I immediately tell myself no, you have your personal paramedic, even if anything happened you'll be fine. And I am.
Of course, everyone approaches things differently and all have individual reasons they must have an ICD implanted but it’s true, if you need one, the peace of mind you get from it outweighs the, lets called them not so positives, tenfold.
In terms of the recovery, I was out of hospital within the day, there was manageable pain and discomfort for the first say 3 days, which dramatically improved each day from then. Just so you know, for any ladies out there, boobs and ICDs/pacemaker implant recovery is a joy (not!) lots of pillows when sleeping helps. You shouldn't lift your arm above your head for at least two weeks and shouldn't get the incision wet for a few days. Oh and no lifting/pulling heavy things for a few weeks (no hoovering! *small jump for joy*) also depending on why you are having the ICD you won't be allowed to drive for a while. Surprisingly I found this the most challenging part of the whole thing to be honest. All in all, I would say for me a week post op I was totally fine. I went back to work (office job) a week after. Its important to mention at this point that I didn’t have physical issues to overcome such as a heart attack so it was a quick recovery for me. Finally, there will a few twinges as things settle which can make you nervous but its to be expected, after a short time you don’t feel it in there.
In terms of living with and ICD obviously its only been six weeks but the only things I’ve noticed that will change things is making sure you stay away from an induction hob, make sure phones and headphones aren’t near your ICD. Oh and security at airports as laura_dropstich mentioned. However there is lots of guidance of the do/don’ts on the BHF site and from the hospital. Whatever happens you just learn to adapt.
I’ve just had my 6 week check up and everything was OK so I’m all good to go on holiday on Saturday. The first one with my ICD and hopefully one that I can finally feel relaxed again.
OK I’ve waffled on enough. If you want to ask any questions please just drop me a line.
Sorry to hear you are worrying about your husband. I had my ICD fitted 7 weeks ago. I was in and out the same day, was awake for the whole thing with sedation and anaesthetic, totally pain free and didn't even need any pain relief afterwards. Had my checkup and phone consultation last week and all is well, Good luck to you and your husband, I hope all goes well.
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Honestly, having an ICD is great, just a comforting insurance policy. 
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