Hello - is there anyone out there who has turned down an ICD/SICD offering?
Just wondered how they have got on?
I have an Ejection Fraction of 35% after a Stemi heart attack 6 months ago, my cardiac specialist has advised me that Echo scans are not as efficient at detecting EF values as MRI with contrast so he has put me forward for a second MRI scan at 6 months to check the previous 35% result.
He also stated that the discrepancy with echo scanning can be between 5 and 10 % either way.
40% seems to be the threshold of fitting one of these cardiac devices so you can see why I am asking before making my choices.
thanks John .
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jrcsheffield
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Not quite what you asked but my husband has just had his 2nd ICD fitted. He's previously had a cardiac arrest & we know his previous ICD corrected his heart a few times. His heart condition is monitored 24/7 and just recently Papworth phoned on a Sunday evening to say his monitor had picked up that he's retaining fluid and needed to go on meds for this ASAP. His first ICD was fitted in 2012 and he never had any issues with it. What's your reasons for not wanting one & why would you not want the comfort of having one that could potentially save your life?
Ps: his ICD also paces his heart as his HR goes to low at times
Hello, my husband has a heart condition called Dilated Cardiomyopathy but has never had a heart attack or any issues with rhythm. His was just 10-15% upon diagnosis and improved within 6 months to 25%. He was offered an ICD just in case he had a rhythm issue as his EF was below 35% per NICE criteria but declined it. He wanted to see how things planned out over a longer period of time, also felt very anxious about having something electronic that he has no control over inside him and extremely worried that it would prevent him driving/riding his motorbike if it went off unnecessarily, which they can sometimes do. As it turned out, his EF improved to just over 40% so he’s not eligible at present. If things have changed for the worse if and when he ever has another review, he’ll reconsider it at the time.
He too was told and then found from experience that an Echo and an MRI give different EFs and the MRI is more accurate.
Everyone’s different and what’s right for one person isn’t necessarily the case for another and I’m not in any way suggesting that you shouldn’t have an ICD if it’s offered. Lots of people love their ICD as it gives them protection from an adverse rhythm and peace of mind. You have to do what’s right for you with your own individual situation. There’s loads of info on the BHF website which may help you decide.
I have several reasons for taking your husbands route of wait and see, providing my MRI result comes back at 40% or above.
Least of all is I am a serious mountain biker and cannot afford to be shocked on some of the routes I descend.
I have other reasons too.
I have read so many positive reasons for having a device fitted apart from the most obvious but I really needed to know if there were any reasons out there for not having one.
I was just telling my husband about this post and remembered one of his Drs said the 35% threshold for offering an ICD hasn’t actually been tested by clinical trials, it’s a “best guess” at where the threshold should be. I expect your cardiologist will be able to advise if this is still the case.
This is a little old, however this is a very well known and experienced Cardiologist working at one of the leading heart hospitals in the UK discussing the merits of ICDs. rbhh-specialistcare.co.uk/n...
I hope your husband is able to make the best choice for him as an individual.
My husband has just had his 2nd ICD fitted at Papworth, he's had a number of conversations with heart failure specialists and there has been no mention of views having changed. Who's view has changed, and do you know why? If views have changed why are so many people having them fitted on the advice of specialists? These are incredibly expensive devices, why would a specialist advise having one if they're not considered worthwhile? I belong to a few sites for heart conditions & ICD's & there's never been any mention of views changing. I will ask the question though and get back to you.
"Clinical and cost-effectiveness assessments of ICD and CRT implantation are supported by real-world data, although the prevalence of atrial fibrillation remains substantially higher than in the RCTs."
Thanks for your reply. You've said that you do know who's view has changed so that would indicate 1 person? Whilst it's against forum views to name names etc I think you're ok in saying why this specialist has changed his views, that shouldn't break forum rules.An ICD is simply a device that will try to correct an abnormal heart rhythm & if unable to do so will shock your heart into a normal rhythm, that's exactly why his specialist and others recommend them because of high risk of sudden death. However, because of his slow heart beat my husbands ICD is set to pace him, most have this function but it's not always activated. Also, as previously mentioned, Papworth phoned to say his ICD had picked up that he was retaining fluid & needed meds for this, so it was able to pick up worsening HF symptoms before it became a possible hospital admission.. I asked another cardiologist about this & was told it's a relatively new thing, she seemed very enthusiastic about ICD's, she not part of my husband's care team though.
Thanks for your reply. You haven't said why these specialists have changed their view? Absolutely a personal choice to have one fitted or not but for a balanced view we should give the 'for & against reasons' in full if we want to be of help to members?
Can I ask why this has been looming over you for so long? An ICD will not affect the way your heart functions or improve symptoms in anyway. Can I ask what your heart condition is & do you know what your EF is?
Yes, we were amazed that the ICD monitor picked up the fluid retention and even more so that Papworth rang on a Sunday evening to tell us but so pleased that he's monitored 24/7 before it became a serious issue.
I completely agree people should discuss their case with their medical team and take their advice & I respect your decision not to say what your heart condition is.
However you said that more than 1 specialist' views on ICD's had changed but you didn't answer my question as to why their views have changed or in what way they have changed. I would be very interested in the reasons so that I can discuss this with my husband's cardiologist, we have an appt with him very soon.
You had said you would be interested in hearing the point of view of my husband's specialist which I have given further up this thread.
My niece's father-in-law had one fitted some years ago. In early 2019 he assumed he had fainted when he woke up on the kitchen floor. The cardiologists found he had actuly died and the ICD had saved his life. Whst he had to serve a six month driving ban he has subsequently brought a new car, moved to a more suitable property and been on holiday a number of times. Without an ICD he would have been six.foot under!
Interested to hear he only got a 6 month driving ban when his ICD fired and he lost consciousness. I received a 2 year ban when I blacked out momentarily in similar circumstances. When I did not lose consciousness it was only 6 month ban. There does not seem to be any consistency. It depends on your cardiology team’s interpretation of the rules. Has anyone else been banned for 2 years after their ICD fired?
A cardiologist told us that even if you don't have an ICD, if you black out for an unknown reason then it's a 2 year ban. But if your ICD gives an appropriate shock, even if you lose consciousness, then it's 6 months no driving, I think it also says that on the DVLA website. An inappropriate shock is a month ban....I think! I assume your medical team would have been able to find out what happened via the ICD records, so it seems a bit odd that you lost your licence for so long, was you ever told what the cardiologist put in his report? Did you receive any further shocks within the 6 months as I believe that adds another 6 months and so on.
This is also my understanding. I am 49 years old, working full time and driving a 40 mile round trip to the office several days a week. I had a ICD implanted in May 2020 after a STEMI left me with a 34% EF. While I am asymptomatic/NYHA 1, two cardiologists were unequivocal in their recommendation to fit an ICD. The risk calculus for me is easy. There is a very small chance that I will have a dangerous arrhythmia at some point and black out etc. but there are two very different possible outcomes. No ICD = death, ICD = 6 month driving ban. No contest.
I agree. My husband did have a cardiac arrest some years before he had an ICD fitted. Since he's had the ICD we know it's corrected his heart a number of times & just recently it recorded he was retaining fluid. Having watched my husband go into cardiac arrest & helped do CPR on him it's not something I ever want to see or do again. When he was offered the ICD because he'd had a black out & was getting dizzy spells he grabbed the opportunity, he desperately wants to live and the ICD doesn't impact his life in anyway, though unfortunately his medical conditions do!
Thank you for responding as it made me look into this more thoroughly which I wish I had done at the time. The BHF post on the subject makes it clear that if you faint and the ICD fires you may get a 2 year ban unless your cardiologist can adjust your medication appropriately, in which case only 6 months. I probably did not need the 2 year ban as my meds were constantly being adjusted and it did not occur again. However I can see why medics may not want to take the responsibility for it happening. I also leant that if your arrhythmia meds are changed you are not supposed to drive for a month! Who knew that?
Incidentally at the time I passed out I was stripping a garden bench and I think the fumes may have caused the faint ( should have worn a mask). It was not like the 2 cardiac arrests I had before the ICD when I went down like a light. I had time to put down the tin before slowly collapsing face down on the gravel.
At least I shall be better informed if it happens again and will not rely purely on what a technician in the pacing department says.
That's interesting that the fumes caused your ICD to shock you, presumably they caused an arrhythmia? Fortunately in the 9 years my husband has had ICD's he hasnt been shocked at all but we do know that it's corrected his heart a number of times, at one point he had over 40 self terminating VT's in a 6 month period!
Hi, that got very confusing 🤣 but as I said we have an appt shortly with my husband cardiologist, so I would appreciate it if you can tell me why specialists views on ICD's have changed and in what way they have changed so that I'll be able to discuss this with him. I will of course let you know what he says on the matter. Thanks
Yes thank you, I would appreciate knowing why they have changed their views. My husband's appt should be around the end of the month. We haven't yet got the exact date, his last appt was 15 October and his cardiologist said he wanted to speak to him again in 6 weeks, he's usually good at ensuring the appts are timely.
Sorry that you felt I was being hostile, I might equally say that you've become quite defensive because I pushed for clarification. I just found it very strange that you made a statement and then totally ignored my question, several times, asking for clarification of that statement, so in fact you wasn't actually giving any information, best or otherwise!!
I get the 'tiring' bit, I also feel that way when people are being evasive
However, I don't feel this is helping the OP or anyone else for that matter. So I look forward to hearing why your consultants views have changed in due course & wish you a good night 🛌
Hi jcrsheffield. My OH has an ICD which he had after a STEMI (in Sheffield) The consultant said it was precautionary but he decided to go ahead. He, like you was quite fit & hated it at first. It sticks out very prominently in his chest and it felt alien to him. He has got used to it and recognises it’s life saving potential, but if you’re not keen to start with then I think psychologically you might struggle. He has never been shocked (4 years on) but it has corrected an arrhythmia once. His EF has recently gone down quite a bit (to 20%) so I suspect they’d be more keen now if he didn’t have it. I have to say I felt better once he’d had it. It was a bit more peace of mind for me. Despite your fitness, your body has just given you a big red warning sign & that your heart isn’t as reliable as it once was, which is really tough to cope with. Do weigh up the issues around the ICD, but don’t rule it out.
My husband had an ICD fitted in 2001 and is nearly into double figures with replacements. He has had new batteries and new ICDs fitted. People including consultants change their view because like the rest of us, they get more experience, there is more research and more information available.
And yet you're quite prolific in this group as a rule and you keep updating, changing and adding to your comment!! So is it only reading & answering questions about your vague comments that you find tiring?? You seem to need to have the last word, so you're welcome to it. Enjoy your day, maybe rest up if you're exhausted.
I had a Heart attack at 65 in Spain and was incorrectly diagnosed with Bronchitis, by the time I returned from holiday I was too ill for a bypass so was stabilised with meds and offered an ICD while I waited for Rotablation and Stents. I have to say I didn’t need asking twice why on Earth would anyone refuse their own defibrillator, we call it my Guardian Angel 😀. I understand not being able to drive for six months if it shocks but that’s nothing in the grand scheme of things, think of how many lives could be saved if we all had one, you’re a long time dead! I’m coming up to 70 now it’s never gone off, though I did get a call from the hospital asking me if I was ok as it showed something was going on as I had a bit of fluid , no problem I had a cold. This was posted from Spain where we’re traveling in our Camper, riding our bikes and having a lovely time in the Sun. Take care everyone and be nice 👍.
When I was diagnosed with dilated cardiomyopathy and heart failure after a virus my EF was in the low 20s. After about a year I was fitted with a CRT-D as a purely precautionary measure. I was told if my heart did go out of synch it could be fatal. I was very unsure about having it fitted. Anyway the device endured the bottom 2 chambers of my heart were synchronised and alongside Entresto my EF improved to 40 and all was well 2 years on. In March this year I went into VF, had a cardiac arrest , knew nothing about the shock from the CRT D that brought me back to life as I was already unconscious. Thank heavens I agreed to have one fitted, think carefully about the alternative. I broke my ankle falling during the incident, I was walking on a local pebble beach at the time but I’m here to tell the tale. It would have been such a different outcome if I’d chosen not to have the device that I felt was not needed
Many thanks for your reply.Your reply more than most is tipping me to going for a device. I am a keen mountain biking and it might seem obvious but never gave having an accident especially falling off the bike much thought.
It is a question for my cardiologist what are the odds of a fall triggering a cardiac arrest... thanks again for your input.
The fall didn’t trigger the cardiac arrest, I had the CA simply walking on the beach, suddenly and totally out of the blue and as I collapsed I fell and broke my ankle. I never imagined that the device would save my life
Just thought I would update all the good folks on here.....you may remember I asked the question about “anyone turned down an ICD?”
Two months on I have an update below...make of it what you will and please remember to discuss with your cardiologist if required as we are all different.
To recap:
The result of having a blood clot form in my heart after a forty mile cycle ride was a STEMI heart attack and three strokes. Because atherosclerosis was detected, three stents were fitted and usual medications administered and, after ten days in hospital I went home
.
I then had two echo scans six months apart.
Both revealed an Ejection Fraction of 35%.
This in spite of signing up for a “double blind” drug trial in the first week after heart attack for Dapagliflozin, I was led to believe at sign up that this drug could improve my EF by around 5%, so I was disappointed.
Then I was recommended for consideration for an ICD/SICD cardiac device.
I then did plenty of online reading from numerous sources including this forum and others about the pro’s and cons of having a cardiac device fitted.
I was told by my Cardiologist that NICE and the NHS recommend a cardiac device fitted if your EF was 40% or lower but at the end of the day the decision to fit one was mine.
Keeping an open mind, it was a bit of a no brainer to go ahead and have one fitted, but having read the problems that could occur hmmm!
I subsequently read that echo scans are notoriously inaccurate and MRI scans are much more thorough, I spoke with my Cardiologist about this and explained that I felt I really needed a more accurate result to help me make the decision to fit or not.
He agreed to the MRI scan which would take an hour to complete, I was dreading this as I am very claustrophobic but, needs must.
I am pleased to tell you the MRI Scan came out at 48%! This means I do not now need to have a cardiac device.
I am uncertain whether it was the Dapagliflozin (which could have been a placebo) or the 800+ miles of gentle ever increasing exercise I have done in the last nine months, this on the indoor bike, outside electric bike or walking. Maybe all of it?
Whatever has caused it I am glad I discussed this with my cardiologist and did all the reading.
So a big THANK YOU to all here who contributed....john.
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