Defibrillator.

[Bowline]

I would like to converse with other patients that have had a defibrillator fitted. I am due to have one fitted in a month's time.

[SpiritoftheFloyd]

Hello and welcome to the forum

I had an ICD fitted in August 2019. I posted on my day getting it fitted, the link is below.

healthunlocked.com/bhf/post...

The BHF also produce a helpful booklet on the subject:-

bhf.org.uk/informationsuppo...

The major drawback is that you will not be permitted to drive for 1 to 6 months (depending on the reason for an ICD being fitted) and if it shocks you, you will again have to give up your driving license for a period of 6 months. There is also the psychological issue of having one fitted which can impact people to a greater or lessor degree.

The plus side of having one is that it limits the fear and anxiety of the possibility of a further arrhythmia which could cause a cardiac arrest.

If you have any specific questions please ask away.

Hope this helps.

[captscott in reply to SpiritoftheFloyd]

Hi spirit of floyd im due to have one soon. Very good post and reassuring! Cant quite see is it two leads . Looks like 1 but ny eyesight is poor too!! Anyway just checking that you've had no problems with leads veins pocket etc? Hopefully not...best wishes cs

[SpiritoftheFloyd in reply to captscott]

Hi captscott

It's a two lead ICD, x-ray isn't that clear. I've had no problems with it at all.

Good luck with your procedure.

[captscott in reply to SpiritoftheFloyd]

Hi spiritofthe floyd

Thanks For the quick response. Im due to have same as primary protection. Just a bit worried about leads etc and changes to life style to having to watch use of left arm a bit more longer term. Your experience is very reassuring Best wishes Xs

[captscott in reply to SpiritoftheFloyd]

Typo on sign off should have read CS. Bad typing finger letters s and x very close on keyboard and I didn’t proof read before pressing the button!

[daveofpensby]

Hi Spirit offloyd has give you some good info. Had mine fitted last February and the way I look at it is it’s my own guardian angle sitting on my shoulder all ready to spring in to action if needed. I just hope she’s not needed and I can make her redundant

[captscott in reply to daveofpensby]

Hello Dave. I'm due to have one fitted. Just a bit worried about longer term issues with leads and veins. Sounds like your guardian angel been no problem so far in that respect thanks and best wishes cs

[daveofpensby in reply to captscott]

Yes never had a problem with it. The funniest thing is the base station. The wife woke me up early one morning because a lot of lights where flashing on the base station then they suddenly stopped when I got up later had a look in the manual and apparently the software in the base station had been upgraded

[sturon]

Hi.

You will find lots of folk on the forum who have ICD's or S-ICD's. Just ask any questions you may have and you will get lots of support and personal experiences. Welcome to the Defib' club.

[IrisCarter]

Hi Bowline,

I had my first ICD in 2002 and have had four replacments since then - the battery only lasts between 5 and 7 years depending on the ICD’s activity.

So ask away.

[captscott in reply to IrisCarter]

Hello iris. l. Im due to have one fitted. Just a bit worried about what I've read on lead and cain issues longer term. Hows yours been. Same leads since 2002? best wishes cs

[IrisCarter in reply to captscott]

In 18 years I have only had 1 lead replaced. All my surgeons do is add another one. I.ve never had any other problems with them. The new technology means that they can last for decades 🙂

[captscott in reply to IrisCarter]

Hi iris thanks for the reply. That's reassured me. Was it a long time ago, as leads have improved, as you say. Btw I'm quite old so decades would lilely outlive me!! By the sound of it, no issues with veins closing up either. Anyway thank you again for the reassuring info best wishes cs

[IrisCarter in reply to captscott]

The hope is always that the device will outlive us! Anyway I wish you all of the very best and if you have any more questions feel free to message me.

Iris

[captscott in reply to IrisCarter]

Yes let's hope so!! Sorry iris 2 extra questions Was the lead failure a way back in time? I assume veins are ok too?

[IrisCarter in reply to captscott]

The lead failure was over 10 years ago and the veins were and are fine, despite being small (so I am told). The materials technology is amazing. I now also have a mechanical mitral valve so am gaining lots of experience with cardiac technology.

[captscott in reply to IrisCarter]

Thanks iris. It all sounds like it doing great. You are getting to be an expert on cardiac technology!. Didnt k ow about mechanical mitral valves. Best wishes with it cs

[Hidden]

My husband had an ICD fitted 10 weeks ao and we weren't expecting it - he went in for successful mitral valve surgery but suffered damage to his electrical heart messages during surgery - he had two Cardiac arrests a week apart whilst still in hospital then had an ICD fitted! at the time we were in total shock at what was happening to hm, he caught pneumonia as well, without the ICD he was at great risk of another cardiac arrest and wasn't fit to come home - hospital was 250 miles away from us. without it being fitted he basically would not survive a cardiac arrest - we live on a small island of off Scotland - ICD is his insurance policy he will live if his heart goes Into cardiac arrest - he lives to be a husband and a father to our young son. Psychologically it is hard getting you mind around it all - my husband is underweight so can see the outline and movement of the ICD under his skin, you have monitoring device sat on a table which sends your ICD details to a remote recording place - ours is our nearest hospital 125 miles away - and driving is complicated - without the ICD my husband would have lost his licence permanently but at the moment DVLA have revoked it for 6 mths which is brutal as he is our only driver (my eyesight fails dvla)and he has a physical disability which means walking to catch a rare bus and carry shopping isn't an option and he lives for driving.

But as the weeks have passed , our stress levels have reduced , we have worked out with friends and a taxi how to get our supplies and my husband lives.

I wish we had known about ICD's as mentally it would have helped us and also helped us make preparations - we don't know what our future holds , if it shocks my husband , his licence gets revoked for longer but this isn't the same for everyone - the heart foundation provide a really good booklet and we have had great support from or rural ICD team 125 miles away.

I hope you can think of it as a positive for you and family / friends - yes it might alter your ability to initially drive but see your ICD as your new friend who will be with you if you need it ,no questions asked.

Good luck

[jowalk6]

I had a defibrillator fitted 6 years ago after a cardiac arrest. I had it replaced nearly 2 years ago with one that worked as a defibrillator and pacemaker. My middle son calls me the bionic woman. It will all be fine hun x

[captscott in reply to jowalk6]

Hello ho

[captscott in reply to jowalk6]

Sorry jo last message went off prematurely. Just wondered if youd had problems with leads or veins. Hopefully not best wishes cs

[jowalk6 in reply to captscott]

No worries lol.. I haven't had any problems with leads or veins. I had it replaced because I woke one night feeling unwell and my hr was over 200 my machine shocked me a few times but didn't bring me out of it they said I got myself out of it. Apparently my old machine was considered a dinosaur! X

[captscott in reply to jowalk6]

Thanks jo that's very good to hear. No problems and it soundslike the shocks might have helped a little bit that night, even if it depended on you doing the rest yourself. Sounds scary though. Very good you've now got a new up-to-date device best wishes with it cs

[jowalk6 in reply to captscott]

Take care Cs. Jo

[ARVCtoo]

Hi. I just wondered how old you are?

I am 37 and have just had an S-ICD fitted 2 months ago after being diagnosed with ARVC last Oct. Mine is prophylactic so only banned for 1 month. I was worried as I have 8,5 and 1 year old so impact would be massive but luckily it was fitted at start of summer hols so didn't need to worry about school run!

I also was worried about leads as I am youngish and would (hopefully) live long enough to warrant several changes. For this reason I went with the S-ICD with my consultants agreement for suitability as the leads sit over the heart instead of in the veins and the device sits between my armpit and shoulder blade. I am very slim so it is very prominent and the wires can be seen up my breastbone. Perhaps you could look in to this type? It is quite painful as it is buried in muscle and as I have a physical job I'm still off recovering and getting strength back in it as I'm not exactly resting with my heavy 1 year old running around!

I was worried about the obviousness of it all and am very self conscious about it, but my husband keeps saying its better to have a hunchback than me burying you in the ground

[TdF2019]

Hi. Welcome to the club. I’m 38 and had mine fitted in November last year after an unexplained cardiac arrest. Lots of development in ICDs and I’d just say listen to your cardiologist and their thoughts and go from there. I found the ICD company reps very knowledgable as well once I’d made the decision.

Like most younger people, I went for the S-ICD due to fewer complications with wiring etc. Took a little getting used to, but it does become a part of you fairly quickly.

Having had an out of hospital arrest, stint on a ventilator and in ICU I can safely say that dealing with the fear of that again is much worse than the psychology of having an ICD fitted (neither are easy though). Having medics in the family, they all feel much better with me having a device than not, despite all the longer term maintenance. Good luck, lots of support and answers on here for you.

[VTMaster]

I've had ICD's since July 2001. I'm actually on my 5th and looking at the next one in 18 months.

Since implantation I've had a number of shocks and other therapy from the devices, 3 in the last 2 years. Without my ICD I would be in serious trouble and it has saved me several times. Well worth having and is a great comfort at most times.

You may have some pain from the wound for a short while and limitation of movement, but not for long. Avoid people who poke you in the chest, it hurts!

Don't worry, as the only thing to fear is the unnecessary fear of the unknown.