Icd: Hi has anyone been advised to have... - British Heart Fou...

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Icd

Yasyass
Yasyass

Hi has anyone been advised to have a icd but lived for years without one or improved only with medication thanks

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Following! Bit late like! Be interesting to see though...I was advised that after a heart attack, the most healing is done in the next 6 to 8 weeks recovery. After that improvement is less significant and usually via medication.

Hope you get some good information to help you make the next decision for you and yours.

Jim x

MichaelJH
MichaelJHHeart Star

Yasyass MichaelJH is going to tell you a story.

A few years ago my niece's father-in-law had an ICD fitted. In January 2019 he came round on the kitchen floor. He assumed he had fainted but on checking it turned out he had had a cardiac arrest and the ICD had kicked in. It saved his life! Without it he would not be around today. Cardiologists do not recommend them without good reason.

Very good point. It was put to me that I was lucky to survive my cardiac arrest and that I'd used up my 9 lives so needed an ICD to prevent any further episodes, a fairly convincing explanation for their suggestion. Added to which this little piece of kit costs a fair wad of dosh, so again is only likely to be recommended if there is a good case of it.

MichaelJH
MichaelJHHeart Star in reply to SpiritoftheFloyd

I believe the cost in the UK is from £20k to £25k including surgery.

Yes that's the figure I was given by one of the cardio rehab nurses - still a LOT cheaper than the USA - on a Facebook site someone posted a picture of their bill for an outpatient 1 day appointment $152,000 ! Ouch

Yasyass
Yasyass in reply to MichaelJH

Thank you I didn’t know it costs that much

Yasyass
Yasyass in reply to MichaelJH

Thank you for your advice

Some good points being made here in a good way. I think any doubts I had before my implant are firmly gone now and affirm my decision.

Hope its helping you 🤞♥️

Jim

Yes constantly advised, and no haven't had one implanted, and still alive (I think?)

I have twice had a cardiac arrest and bern saved by my ICD. Without 8t I would have died.

Thank you for your reply

The majority of people wouldn't buy an expensive phone and not take out some form of breakdown insurance. I see my ICD in much the same way as a breakdown insurance policy. If something happens to my ticker then my policy kicks in, and then someone can take a look at what's gone wrong.

No. I was advised to have one 18 years ago and am now on number 5.

My own perspective is that the cost to the NHS and the tight criteria we have in the UK means that it is only advised if clincians feel that it is essential. The evidence from a study in Brazil is that the cost to health services is higher than the benefits which suggests that it is not a decision taken lightly,

However, I am also aware of the huge psychological burden and restrictions that having an ICD bring so I am also an advocate of people making an informed decision. There have been times when I have wished that I never had it, but on balance it was the right thing to do for me.

The other issue is that globally, outside a health setting survival is 8%. So 92% of people who have a cardiac arrest outside a hospital setting die. In the UK it is 90% who die.

Hi Iris,

Is that 90% people with an ICD or without?

Or just 90% in total?

Jim

90% without an ICD.

This site provides some evidence regarding survival with an ICD:

medtronic.com/us-en/patient...

While Boston Scientific (another manufacturer of ICDs) state that:

With an ICD device, 19 out of 20 people may survive Sudden Cardiac Arrest. Defibrillation has been shown to effectively stop 95% or more of dangerously fast heart rhythms.

Ref: Himmrich E, et al. Is ICD programming for double intraoperative defibrillation threshold energy safe and effective during long-time follow-up? Results of a prospective randomized multicenter study (Low-Energy ENDOTAK Trial - LEFT). Z Kardiol. 1999;88:103-12 [German language edition].

Wow. That's amazing! And news to me. I hope im 19 out of 20 but with my current run of luck im probably the 1 in 20🤦‍♂️😉♥️

Thanks for sharing

I am sure with that those odds you would be in the 19! I have often felt very unlucky myself - rare SDS, then failed heart valve, now in heart failure. I’ve never smoked, was in the gym 6 days out of 7, ideal BMI and didn’t drink to excess or even regularly.

Some people don’t believe me when I tell them the other things that have happened to me too. I’ve also had a very varied career path [shrug]

What's SDS?

Has your ICD ever gone off?

5 in 18 years seems like a lot. Do you know why you have had so many?

Jim

SDS stands for sudden death syndrome and I am lucky that my ICD has never fired. The replacement average is between 5 and 7 years depending on how much work the ICD. does. Mine paces most of the time so the battery wears out faster. I also had an ICD fail after 2 years which is very rare. It turned out to be a known fault that the manufacturer hadn’t declared. There was a class action in the US suing them. They were taken over by another company and the whole industry is even more stringent now. I also had an ICD replaced earlier than usual because I was in hospital and they didn’t know with the pandemic when they would be able to do it.

Ok makes sense. I read about the recall on the ICDs recently. I hope you continue well on your recovery and thanks for all the helpful info. You certainly seem to know your stuff. 18 years without firing is brilliant!

Hi had a I C D fitted May 2019 .Christmas time i had a shock the consultant said it had done its job .

Hi I wouldn't be writing this if it wasn't for my icd, so glad it done its job char

Morning Yasyass,

Some great replies to a great question here.

There seems to be a bit of a trend here also. I hope you have noticed!

I also hope it helps you make a more informed decision.

Am here for you on the rest of your journey

Jim

Thank you Jim and everyone giving me encouragement when I see my cardio if he suggests a icd I think it may be better from what I have read take care kp us posted. Yasyass

Yasyass
Yasyass in reply to Yasyass

I mean better to have one fitted

Nothing to thank. You did it all yourself! Some amazing replies from all the forum members who have all talked from their very own personal experiences and therefore been in your shoes at one time. It's truly wonderful that there are so many knowledgeable kind people who are taking time out of their day to help you to make an informed decision.

I think any doubts you did have must surely have been put aside now and I would suggest you tell him what you would like rather than waiting. You could even tell him you have spoken to many Hearties on here who gave you lots of information and support

Keep us updated

Jim x

Hi

I have a ICD fitted, I have just been on a first aid course and done some work with defibrillators and such, to have one permanently embedded on me should anything go wrong made me feel sad for those who don’t have one!

And to be offered one and not take it is taking a chance, there not offered just to pass the consultants time. As you haven’t needed it so far but you will only need it once to save you. It’s a bit like jumping out of a plane without a parachute, so far so good, so far so good, so far......

Jumping out of a plane without a parachute! What a great way to describe it😍♥️🤟

my husband had an ICD fitted July this year - we were not expecting it , he went in for mitral valve repair which was successful but damage during surgery caused him to develop AF - he had 2 cardiac arrests whilst in hospital as a result - he had an ICD fitted - cardiologists would not even transfer him closer to home before it was inserted. 3 mths on it hasn't activated but his heart rate fluctuates from 40 bpm - 167 bpm whilst doing nothing BUT if it does shock him he stands a high chance of living - without it if he went into cardiac arrest he was unlikely to survive - NHS in UK would not recommend it if it is not needed - surgery , implant, remote monitoring , follow up appointments etc cost thousands. we have home insurance, car insurance and now he has an ICD asnhis insurance to live

yes I'm agonising over decision too. primary protection and pretty much asymptomatic which makes you think you've got the luxury of deferring decision . But guess on balance it's better to do than not to do, as it seems to add minimum of 10% (up to 50%) to survival odds and worse ,or rather best case, if its hopefully not needed, is that you've had an unnecessary procedure and taken on some long term risks with leads etc. However it's still difficult to make that final call, though i hope I'm nearly there like you, having read the feedback above.

Hope it goes well. they seem to have improved quite a bit over the years

Yass_123
Yass_123 in reply to captscott

Hi how r u did u decide to have the icd ue to covid I think there r delays I am still thinking but my apt with the cardio is after 5 mths for discussion im just trying to stay healthy hope things improve

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