Risk of ICDs and living with an ICD - British Heart Fou...

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Risk of ICDs and living with an ICD

KentFox profile image
16 Replies

Hi, I am a 64 male and am new to the BHF community. Following a heart attack in 2019 and having a stent fitted, my cardiologist has advised having an ICD fitted. I am trying to weigh up the pros and cons of a traditional ICD and a subcutaneous ICD ("S- ICD"). From advice received I think the major downside of the traditional ICD is the increased risk of heart infection in the future. The downside of S-ICD is the need for a general anaesthetic to have it fitted and risks associated with that. I am also trying to assess the practical aspects of living with the device as I have always enjoyed physical exercise and generally staying fit. I would welcome input on both the pro and cons of the 2 devices and practical feedback from members who have had either the traditional ICD or S-ICD on day to day life and undertaking daily physical exercise (mainly cycling and walking).

16 Replies
Wodney1966 profile image
Wodney1966

I have had s-icd fitted I was put to sleep and stopped in hospital over night they advised me to have that one 👍👍👍👍

SpiritoftheFloyd profile image
SpiritoftheFloyd

Hello and welcome to the forumI had a 2 lead ICD fitted in August 2019, I posted my experiences of the day, link below:-

healthunlocked.com/bhf/post...

Since then I have had no problems with living with it. It has not shocked or paced me. I'm not aware of any specific issues with infection beyond the normal one where when the skin is broken in an operation there is always a risk of infection.

I had to avoid raising my left arm for 6 weeks to allow the wound to heal. Apart from that my physical exercise is back to where it was prior to the ICD, I walk, run a bit, use an exercise bike and go to the gym (when open) without any issues.

Thanksnhs profile image
Thanksnhs

Hi I had a traditional icd, I had no problems with it I hardly noticed it was there after the first six weeks , it never stopped me doing anything and made me feel more confident when out and about especially when I was abroad knowing that if something did happen it was there, it did shock me once when I was sleeping, I never even woke up , if the hospital hadn't phoned I would never have known, I had a home monitor char

KentFox profile image
KentFox in reply to Thanksnhs

Thanks very much for your feedback. All very re-assuring.

Ceo1 profile image
Ceo1

My husband had a sub cut ICD fitted last year. It’s great! He walks the dog, motorcycles, does field sports and heavy woodwork (making stuff) all with no problems. You have to notify DVLA that you have had one fitted but they were not particularly interested! Apart from a small scar and a small lump where the SCICD was fitted, you couldn’t tell anything had been done. My advice is go for it! The doctors don’t give them out for fun...

sturon profile image
sturon

Hi and welcome

My husband has an S-ICD implant. You may find this is site helpful.

s-icd.eu/home.html

The major difference between an ICD and an S-ICD is that with an S-ICD the cable does not go into the heart itself. You may already know this and sorry if I am telling you things you already know. My hubby had his fitted three years ago following the discovery that he has long QT syndrome and had two cardiac arrests.

We have lived a perfectly normal life since (well until the pandemic). We have traveled extensively and have never had an issue while on our trips.

If the cardiologist recommends an S-ICD then I would go for their recommendation.

Good luck.

Ceo1 profile image
Ceo1

Btw - his implant was done under full ga due to his anxiety about the procedure. Spent 1 night in hospital - no issues at all. Hospital was brilliant.

DaveTR profile image
DaveTR

Hi Kent Fox,I have a traditional ICD fitted which has corrected dangerous heart rhythms hundreds of times delivered full defibrillation 3 times.

I can't offer any words on the S-ICD as I have no experience of them.

I was unable to drive for 1 month after the operation and was told to avoid using my left arm for 6 weeks.

I now have no problem walking or cycling. I do try to avoid lifting heavy objects above shoulder height, but that's it.

I think it is a case of 'horses for courses' so I would go with whatever your Consultant suggests.

KentFox profile image
KentFox in reply to DaveTR

Hi DaveTR, thanks for the feedback and the reassuring words!

Shawrie profile image
Shawrie

ICD? Can we please have less abbreviations.

FeetheBookworm profile image
FeetheBookworm in reply to Shawrie

Implantable Cardioverter Defibrillator - called an ICD by all the medics who have dealt with me.

Prada47 profile image
Prada47 in reply to Shawrie

Hello

Only thing I can say about 3 letter acronyms is that they teach you to understand the jargon that Medical Professionals use when discussing your case. Once you come to understand them you are not totally in the dark when they are talking about you.

Hands Face Space Vaccinate to Stay Safe

KentFox profile image
KentFox

He suggested the traditional ICD which is the option I am leaning towards.

Sheamah profile image
Sheamah

I have recently had an ICD unit fitted 7 weeks ago under general aesthetic and still getting used to it. I have been very dizzy and spaced out. They have adjusted my unit in hospital and I have 3 months checks. For the first time in 6 years my heart is peaceful and not racing at a fast rate ... I have had numerous cardio versions and a cardiac ablation. This was not a pleasant experience and I went into cardiac arrest. I investigated ICD units but came to the conclusion my life would improve as a result of the unit but it’s been tough to come to terms with and I have struggled. I am not normally a really low person and usually upbeat but this latest procedure has tested me. I have decided that this my body , my life and I have much to do and I’m going to take control of my destiny. I ask questions and expect answers that I understand that is not wrapped up in medical terms.

Sheamah profile image
Sheamah in reply to Sheamah

Sounds a bit aggressive.... sorry but I’m really have difficult days as they have changed my meds. I’m staying positive and hope for great things in the near future.

Frequentshocker profile image
Frequentshocker

It may be too late to advise you now, Im guessing you may have decided and had your ICD fitted, but just in case or for newcomers asking the same question this site gives a simple explanation of tge differences....

mayoclinic.org/tests-proced...

I had the traditional ICD fitted 6 years ago now and apart from a little discomfort at first and occasional shifting within the site if I do anything strenuous, or lie awkwardly to sleep, its been ok. The wound healed nicely, I did worry about infection but a fresh slice of raw onion daily under a large plaster for a few days took away the itching and it can draw out any infection. It doesnt smell too great but did a great job of stopping my from scratching my stitches!

I have had the misfortune of over a dozen shocks in the first 5 yrs, some while asleep and woke me like a boot in the chest, some Ive slept through, most while awake and feeling so drained Ive fainted and been shocked awake again. This seemed to be regardless of beta blockers but I couldnt function on a higher dose and was allergic to some. Now on Quinedine and only 3 shocks at the start. Unfortunately I done faint on these meds so Ive felt the full internal 'bomb blast' knocking me backwards, the third was a mild one as I slept, but I was recovering from sepsis at the time. Since then, no shocks all year, but I have been at home shielding all year and can rest any time I feel so drained. Im absolutely dreading returning to work once I find a new job though. I feel like I should be able to do anything (except find cheaper holiday insurance to fly abroad) yet my lack of energy remains a problem. Not sure if its my meds, or more likely my heart but awaiting last weeks tests to find out. An ICD means reassurance that I wont drop dead again with cardiac arrests, and it is something you easily get used to. Im due my first battery change next year although I'm told at the clinic its generally ok for up to 10 years now but possibly as mines fired frequently they will book it for next year, and they may simply fit a new one rather than changing batteries. Ive yet to confirm that one. Other than keeping the phone away from your ICD and avoiding magnets Id rather have my 'bionic lump' than risk the alternatives!

If you've had yours fitted, keep us updated on your progress!,

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