Joining the ICD club: Not the club... - British Heart Fou...

British Heart Foundation

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Joining the ICD club

Pikaia
Pikaia

Not the club anyone would like to join, but here we are. I had a few runs of ventricular tachycardia (non-sustained) and managed to capture one on my Alivecor Kardia (worth the expense for just that ecg). I'm now sat in Barts waiting to know whether it's just a subcutaneous ICD or one with wires into the heart so they can also pace if necessary.

I'd like to know any does/don'ts and advice on ICDs and recovery time and how people have gotten in with them and living their lives. I know everyone is different but it would be interesting to know the kind of life in store. I'm 39 so I'm particularly interested in hearing from folk who have received such a device at a similar age.

Thanks in advance .

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Lots of happy ICD owners in the replies to these posts, plus the BHF information page, in case you haven't seen it already :)

I got my device about five years ago and took a while to adjust, physically and mentally, but now hardly think about it other than to feel reassured by its presence. Mine is a CRT-D, so does pacing/synchronising as well as having the ICD. Feel free to fire any questions my way if you think I could help. Good luck!

Thanks laura_dropstitch! Bit nervous about it all, especially with a bouncy 4 year old at home.

laura_dropstitch
laura_dropstitchHeart Star in reply to Pikaia

Yes, that element is very tricky. I had a still breastfeeding 18-month-old when I got mine. Nightmare! But we managed :) The most important thing is not to lift the children (or anything else heavier than a cup of tea) for at least six weeks, or you run the risk of dislodging the leads. But otherwise you should be able to do everything you normally would with them, albeit slowly and carefully for a while. And no raising your arms above shoulder height for those six weeks either, which is a bit of a pain. After a couple of months, though, you should be able to get back to normal life, other than getting patted down at the airport.

Thanks. Reassuring to hear from someone who's been through it.

Hi Pikaia.

My partner had an S-ICD implanted following two cardiac 'events'. He has long QT syndrome and the cardiologist felt that the two events were VT or VF events (we didn't have an ECG to be sure). After much CPR and three weeks in hospital, including a time in ITU, he had the implant in January of this year. It took a few weeks for things to settle physically. Emotionally we are just about there now. We have had two holidays since and at the airport security you will get the 'Royal' treatment but other than that, and he can't use our induction hob, life is now back to normal. The local hospital runs a support group for ICD patients and you may find attend this may help you feel less alone. If it's and S-ICD you have let us know as not many people appear to have this type and it would be good to chat about how things are.

Good luck and kind regards Ron.

I have CRT-D, I would say it’s a miracle and I’m pretty normal in every way. I’m in my early 50’s

Hidden
Hidden

Hi I have had my icd for 9 months now, although at 59 I am a bit older, the thing that happened to me, was that I ended up with a frozen shoulder! I am not sure how unusual that is but it was agony, I had to have physio and cortisol injections, still a bit sore but getting there, they said I either moved my arm too much or not enough! No problems with the device itself, it is dvla notifiable the form is online char x

Hi there and welcome to the club! In terms of the operation and recovery time, you have nothing to worry about. The op's done under local anesthetic, and I got home the next day. There was no pain or discomfort and the scar faded reasonably quickly.

In terms of post-op medication, you may find yourself feeling lethargic and tired, but this will pass as your body adapts to the new regime.

The thing that I find very tiresome is not knowing when the ICD will go off. Also, my reaction to the shock has deteriorated. To start with, I found that I could cope without difficulty, but it is now seriously unpleasant.

Hi. Welcome to the club! I'm 29 and got my ICD after a cardiac arrest out of the blue in April this year.

It shocked me to save my life from another arrest in May. I'm so thankful for it.

Recovery time was a little longer for me than others have described but I think that's probably because my heart was also recovering from the arrests.

Physically I still get the odd ache and niggles in my pec and armpit. Some yoga moves are uncomfortable but still getting better 5 months on. Docs tell me this is because the muscles of my chest are still meshing around it.

The ICD itself doesn't really stop me doing anything. It's so much less noticeable than I expected too! Mine is implanted under my pec muscle. They weren't sure I was going to have enough tissue to do that but I'm pleased with the result.

Hope the op goes well xx

Icd’s are not a problem, I had mine fitted when I was 44. The main problem is driving is not permitted in the first six months. It also depends on active you are. I was quite sporty and used to run, so it took a few visits to the ICD clinic to get the setting right. I also take warfarin so that mean blood tests. Apart from that you would not know the difference. My first ICD lasted about 6.5 years before it need changing. Good luck and have the peace of mind that the next VT incident will be captured by the device. Even if it does not produce a therapy.

I have a icd and pacemaker from birth and I’m 32. They are both small devices in my heart and the onli time I notice it is when I’m re wired. This is about every 10 yrs.

Hi all, thank-you for all the replies.

It's now been 3 weeks since I had my ICD fitted. It was a dual chamber one, i.e. one lead in the left ventricle, one lead in the left atria, going in through the vena cava. The procedure took about 2 hours and was relatively painless, if a bit boring (they didn't really chat and I had a sheet over my face for most of it).

After about a week the bruising went down and now I don't really notice I have it, other than being careful with lifting my arm or carrying anything heavy. Any irritance is mitigated by the fact I know the thing is monitoring my every beat and will spring into action before I even know anything is going wrong. This knowledge alone is doing wonders for my heart anxiety!

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