What is life like with an icd? - British Heart Fou...

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What is life like with an icd?

Maradona10 profile image
10 Replies

I'm a very active person. 44 years old. I love to run. Is that still possible? What can I expect? Any information would be greatly appreciated... So daunting.

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Maradona10
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10 Replies
sturon profile image
sturon

What's life like with an ICD? - In our experience the simple answer is: life is just normal.

You didn't say why you are need an ICD implant and of course every one is different. My husband has one because he has Long QT syndrome.

My husband has a S-ICD implant. He has had this for 5 years and although at first things were a bit strange, mainly because it was fitted after two cardiac arrests. Now we live life to the full and are working our way through our travel list.

There a few things which you may need to be aware of, like you should avoid being near an induction hob. At airport security you need to show them you ICD card and they will not put you through the conventional scanning. If you ever need an MRI the hospital may need to turn the devise off and back on after. Driving with ICD you should follow the advise of the DVLA and let your insurance company know.

If you have specific questions write them down and be sure to ask at the hospital.

Having an ICD is like having your own paramedic with you 24/7. So relax and be reassured.

Good luck.

Adam1967 profile image
Adam1967

I’ve lived actively with my ICD for four years without problems. Initially I felt very aware of this chunk of electronics in my chest and was wary of doing any vigorous exercise in case I dislodged anything. However after the initial bedding in of the device I started with light daily rehab exercises which included step training and gentle jogging. For longer strenuous exercise I took to cycling as it didn’t move my upper body too much. I gradually brought in running when I felt less protective of my chest area and am now running 5k about 3-4 weeks without any problems. I joined Parkrun which is a great way of social running with a good encouraging community around you.

My advice is to stay active and definitely keep up the running. Just take things slowly at first and build up intensity gradually. And be patient with yourself - you won’t necessarily be at the same fitness level after fitting of an ICD. But over time you’ll forget it’s there and be able to live a normal but fully active life.

All the best for the future

BeeBee79 profile image
BeeBee79

Hi there,

I’m 44 and I had an ICD fitted July 22. I still can’t run properly but it’s because of other issues, not my ICD. When those issues calm down, I can run with no bother from my ICD. In fact, you’re probably safer than any runner out there who doesn’t have one.

in the early days of getting the ICD, it would be strange to run until you are allowed to then I would advise building yourself up from a brisk walk until you get used to the extra weight in your chest. I think it’s about 2-3 months before you’re not completely aware of it all the time.

Enjoy your running 😀

Alixia profile image
Alixia

I had an ICD fitted at 37 years old. I think life after an ICD can change depending on your diagnosis. My diagnosis (LMNA cardiomyopathy) means that strenuous exercise is not good for my heart, so my exercise regime is now more gentle. Speak to your doctors about your diagnosis and exercise. Apart from that, the ICD is there to allow me to live as normal a life as possible, and that is what I do.

You’ll be very aware of the device at first. This is very normal, and within a few months you’ll forget it’s there most of the time.

Flimflab profile image
Flimflab

I have no personal experience to share.

The BHF has some advice on exercise and ICD. bhf.org.uk/informationsuppo...

There is also an international group "cardiac athletes" where there may be runners who have experience of ICD their facebook group is facebook.com/groups/4780372...

You should also probably clear any exercise program with your GP and cardiologist.

CyclingTime profile image
CyclingTime

Doesn't Christian Eriksen the footballer have one? I think when he collapsed at the world cup they fitted one, I may be wrong

Pouchielou1972 profile image
Pouchielou1972

I initially felt like my life was over and I wouldn't be able to do most things I could do before. I was scared just belly laughing would set my ICD off....boy was I wrong! After it's initially settled in, you get totally used to it and forget it's there. I had mine fitted last year age 49. I'm back to weight training and most things I did before. It's totally normal for you to feel this way, but trust me, once you get used to it and get to the point of no barely remembering it's there, you realise it's your guardian angel, waiting around just incase you ever need it in the future.

EmmJayTea profile image
EmmJayTea

As others have hinted above, it really depends on the underlying reason for having an ICD, rather than the ICD itself.

I am 46, and a former middle-distance runner. I would hit the gym 2-3 times a week, in addition to running every other day. Eight weeks ago, I had my ICD fitted following a dangerous cardiac event. My first question was about running and, as you'll see here, my particular situation means that I can no longer run without issues.

I have arrhythmogenic ventricular cardiomyopathy (aka ACM or ARVC), something that's been undiagnosed until recently. It's a weakness in how the cells hold themselves together in the myocardium. Whereas for most people, exertional exercise is a good thing and will strengthen the heart muscle, for people with ACM, we have to be extremely careful as repeated exertional exercise will simply accelerate the progression of the condition. Call me old fashioned, but I don't really want that.

Obviously, I will still benefit from keeping as in-shape as possible, to prevent complications. I'm now gradually increasing my walk lengths.

Week 1: I had to pause several times on the way to the post box 200m away.

Week 8: I can walk a fairly brisk 5km on the level.

Hoping to introduce some gentle weights activity soon, to help build a bit of strength.

Talk to your specialist and check what types of exercise are okay for you to continue with (allowing for recovery time, of course - you'll need to gradually reintroduce activity). It's also worth checking on the trigger thresholds for your device; what tachy HR will trigger therapy? Knowing this would be very useful as you'll want to stay well below this to prevent potential (unnecessary) shocks.

Good luck and take care. 🙂

Maradona10 profile image
Maradona10

Thanks to everyone for your replies. Appreciate it.

EmmJayTea profile image
EmmJayTea in reply to Maradona10

No problem. Whether you end up with an ICD or a pacemaker, it is perfectly natural to have lots of questions. If you feel daunted - this is normal. We don't enter the world expecting to be fitted with life-saving electronic devices. I was really not sure what lay ahead and I've experiencd a fair few mental and physical challenges, but the journey is definitely getting easier. I have spoken to many people with devices (including those in the same ward as me) and gained from their lived experience, hints and tips. This has been invaluable and I hope you benefit from shared advice on here. 🙂

I've just started a course of psychological support from my clinic to help me adapt to a very different and new lifestyle - a massive help already.

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