Hi everyone, I met with my heart specialist here in Newcastle upon Tyne (UK) yesterday and I have been pencilled in to have an ICD fitted. Does anyone on here have any experience of such a thing?
I'm brand new to this forum and I'm also absolutely hopeless with technology and computers so I just hope that I can navigate my way back to this page.
Thank you all. 👍
I'm not fully clued up as to what my exact circumstances are but I've suffered with heart failure since 2010 and I now have a very erratic heartbeat. Sometimes it's as low as 40 BPM and other times it can be as high as 100 BPM. I met with my heart specialist yesterday and the ICD was mentioned. I'll be having it fitted in the next few months.
Have you had any problems with yours? My specialist said they can occasionally give you a phantom jolt.
Any info would be gratefully appreciated.
Thank you.
Hi, I had one fitted a couple of months back, I won't lie it's not the most comfortable procedure but it soon just becomes something you get used to. Biggest thing of use for me was digging out all my old work shirts and ignoring my t-shirts, so much easier for the first couple of weeks. Any questions just ask i'm sure someone here will know the answer.
I was shocked 3 times during the procedure using proper pads (apparently my heart was a bit 'special' )😀 Normally anything medical doesn't phase me but I found the first 3-4 days after I was a bit paranoid, it soon goes away though.
One thing to add, assuming you drive start preparing now for 6+ months without a licence. Stupid things like not being able to go shopping or pop out for a coffee when I want have been far and away the worst part of it all.
Thank you to everyone who has taken the time to post as it's greatly appreciated by me. 👏
The specialist who dealt with me yesterday seemed to spend an inordinate amount of time dwelling on the negative aspects of having the ICD fitted, and when me and my brother left the interview room (four ears are better than two when talking to doctors) we both looked at each other in disbelief at how unsympathetic she had been.
I forgot to add that I do actually drive.
Hi - I have had an ICD for 25 years and had 4 replacements. The procedure is straightforward but will be uncomfortable afterwards and you will be conscious that it is there...Up until Sept last year the divice had shocked me 3 times in those 25 years since Sept I have had over 35 shocks..........these are painfully and dont let anyone say otherwise, my anxiety is now at a stupid level expecting the worst that it goes off.
The only way I can describe the shock is being punched full force in the chest, but it is the moments before that are terrifying.
As you can see I am not trying to dress this up and people should understand what we go through both mentally and physically,
However, on a positive note.......we are on this planet for such a short time and the ICD has saved my life over 50 times.
Stay strong my friend........
Has your specialist given you any reason as to why you've experienced such a huge increase in the number of shocks you've had since September?
Sam
Hi Sam the reason why is because I am getting older and when you do your heart scars on the inside. The reason why my heart keeps going into VT is because when my heart beats the electrodes keep hitting these scars then the beat goes into a look and the heart rate goes irregular which brings on the shocks........since sept I have had 4 ablations but they have done all they can on my heart as they can't do any more. So I am now on the heart Transplant waiting listRegards
D
Thank you for your very candid reply and I wish you nothing but the very, very best.
Sam
I had am ICD fitted in Nov 2022 and it really has saved my life. Yes, it was slight discomfort for the first few weeks, but it settles in after that and you barely notice it as it just becomes a part of you.
The hardest part for me was the fact that you are told to barely use your left arm for the first 6 weeks to ensure that the leads settle into the heart tissue as you really don't want these coming out as it may stop the ICD working and they'd have to go in again to put them back in place! You do need to gently rotate your left arm during this time though, which they will advise you, otherwise you will end up with a frozen shoulder.
The no driving for 6 months is only for those which have had a heart attack/cardiac arrest prior to getting it fitted. If you haven't like me, the ban on driving is just 1 month. These are DVLA's rules. You will also need to inform them.
PS...I haven't been shocked so far fingers crossed.
I had an ICD fitted n 2021 after the widow maker HA. I was only stopped by DVLA for a month from driving. Its onlyb6 months if you have a HA after it's fitted.
hello, having an ICD doesn’t stop you driving. If it provides therapy, ie shocks you , then there is a ban for 6 months I think , but if it’s just sitting in the background no it your heart you can drive ok.
Hi and welcome. Dealing with the mental as well as the physical aspect it a big thing. Be good to yourself and as Pouchielou says be careful not to do too much at first until the wires bed in. I think sometimes surgeons do so many of these ops that they forget what impact their words can have on people…..unless you tell ‘em 😀. It’s amazing what they can do these days x
I had one fitted in 2021 after the widow maker HA. I was diagnosed with heart failure as my EF was only 31%. This was done 5 months after my HA as I was suffering from diagnosed PTSD due to the severity of the HA. Its an uncomfortable but painless operation and I watched my cardiologist perform and he explained every bit of the procedure as he did it. You are not allowed to raise your arm for 6 weeks after until all the wires have settled in Best thing I have had done to help me. My anxiety kevels dropped immensely after the op and I feel like I have a reassuring back up now, should anything happen again. Fingers crossed it doesn't.
A warm welcome to you, I hope that you find this forum as informative and supportive as I and many others have.
The CRT-D { Cardiac Resynchronisation Therapy With Defibrillator } I had fitted has without a doubt has saved my life.
I want that life for as long as I can have it, so I am willing and grateful to have one of the most remarkable pieces of machinery placed into my body to achieve that.
Love life ? get it done and then get on with it
Take care
one of the best replies, comments I have read. I’m in the same mindset, let’s take our second chance and enjoy every minute of every day. There are thousands of families out there that wish their loved ones had had a second chance.
Take care every one, today will be a good day and tomorrow even better.
Totally agree I look upon my CRT-D in exactly the same view.
Hi I had an ICD fitted six weeks ago
It was after quite a few discussions with the consultant and I did seem to make sense to have it done as it is really just a back up in case.
I was very surprised when I got to the hospital ( The Good Hope Hospital , great name for a heart surgery hospital) to find there was six of us on the list for that day so it is a pretty common thing.
The op is done under local does not really hurt but is an uncomfortable feeling while they are doing it , it only takes half an hour and then they send you back to the ward , they check it with a meter keep you there for an hour or two and send you home .
One thing is that it is pretty sore once the local wears off and this lasts for a few days then eases of and then just becomes a bit of discomfort ,it just feels like something is pulling in you shoulder at times .
You do know it is there for sure it is quite a lump but it does seem to have gone down a bit over the last two weeks
I was like I suspect you are seriously nervous about having it done but thought if it’s going to save my life one day then it has to be worth it and although it’s not a great experience it is not as bad as I thought .
You will be fine and before you know it it’s done
Hope that’s helped and I wish you all the best with it , keep in touch and we can compare notes , I have the follow up in two weeks so can let you know what that entails as well
They send you a monitor which I have plugged in and turned on but still not sure exactly all what it does ,
KR
Pete
Hi again everyone and thank you all for the very informative replies, you really are a grand bunch of people. 👏
Can I please ask about the use of mobile phones and tablets. Is it just a simple case of holding the phone to your ear furthest away from the device? I also use a 7" tablet and tend to balance it on my chest as I lie in bed. Will it be OK to continue with this but remember to keep it a decent distance away from the device?
I'm sorry for all these dumb questions.
Sam (Newcastle upon Tyne).
Dear Sam
No questions are dumb and you are in the right mind set to find out all you can before having this procedure done.
You will hear a lot of scare stories about what you can and cannot do once it is fitted, most of the cannot dos are on the caution side.
I even cook on an induction hob, but I don't lay all over it { strangely never did before my fitting either }
My Rhythm team { still doesn't sound right } have never had a modern pacemaker fail because of user error.
All modern Pacemakers will only be disrupted by strong magnetic fields and even then will re-set themselves to your own personal setting as soon as you are out of range of the disruptive force { all very Star Wars }
Depending how interested you are then the Pacemaker uk site can help a lot.
At the end of the day if you have been offered one of these incredible machines then they must think that it will improve your outcome and longevity, and anything that does that surely must be worth it.
Just because the operation to fit them is viewed as routine , it is far from that, its just the skill of the team and the thousands that have gone before us, makes it seem so.
Grab life , take everything and anything offered to make more memories of it { and not just for you }
I'm with Blue1958 here, the scare stories are exactly that. Using my phone on the wrong side, wearing full size headphones, wearing a fitbit, moving through store security fast, I was dubious on all of them but maybe that's because my insertion was far from normal.
A week later I was fine about all of it, the only changes I have made are an attempt to use my phone on the opposite side (although I often forget), and changing my magnetic bracelet on the fitbit but that's because I wear it at night and often sleep with my hand up by my shoulder.
Jury is still out on my induction hob as it has a boost function that is pure evil, on the plus side though my wife now does all the cooking 
It seems every time I come on here there's new messages been posted and I'm grateful to each and every one of you for helping me out in this way. Thank you. 👏
I have another question: I realise all of our conditions are slightly different but what do you all do regarding drinking alcohol?
Will it be OK for me to have four or five beers once a week or is alcohol best avoided entirely?
Thank you all once again. 👏
Sam
Hello again. Its not the device that is affected by alcohol, it is drugs i.e. the medication you may have to take now you have a diagnosed heart condition. It is mainly the blood pressure and beta blockers that they advise not to drink with. But I have been on both for over 40 years and still have a glass or 2 of wine now and again. But like someone else on here said. You do need to consider, if you want to live then some lifestyle changes do need to be made. Embrace them and enjoy life, or kick and scream and moan and have a less than enjoyable future. That really is your and yours alone choice to make.
If you look in the settings for your membership, you can set it to send you an email when anyone replies to your post. ( Do a single click on the circle for your name - top ri ght- probably says'more' and it shows email notifications). You can also bookmark the page ( ie save a link to it) ion your browser. Try right clicking on the web address and see if it says something like add to favourites or bookmark this page. If there's a star next to the address click it- that will also save a bookmark. It depends what browser you use. Even simpler is to copy out the address and save it, either on computer , phone or a piece of paper.
My medication and alcohol just doesn't mix { believe me I have tried } but that is me so its a question to ask your Cardiologist/Dr { time to begin writing these questions down }
It certainly has not stopped me being social now that there are some fantastic, low to no, alcohol beers { or whatever your tipple is }
Sam I will be honest with you, your life will change, it has to, but that's not a bad thing I promise you, once you settle into the new you the old one will become a thing of the past, just let it go, it was making you ill after all .
Warm wishes
Hi MyGeneration, I had a CRT device fitted years ago because of heart failure. In 2018 it got upgraded to CRT-D (Cardiac Resynchronisation Therapy-Defibrillator). I was only stopped from driving for a month. It is uncomfortable for a while then you forget it’s there. I’ve never had a shock, and I don’t want one because from what I’ve been told it’s awful. I noticed it was a lo better the second time I had the defibrillator added, and the care was a lot better. The first time everything was open for me to see it was horrendous, but the second time it was covered over I could only see the monitor. They do give you pain relief, tell them you feel pain badly so you need extra sedatives lol that’s what I do.
Hi only a quick comment regarding previous comments made about the pain of receiving a shock from the device, my life was saved a second time by a shock from my CRT-D after a second cardiac arrest, I felt no pain due to the reason for the shock, but even if there had been severe pain I would take that any day rather than the other option.
I have had three Ablations now ....but still have problems as they only work for a week or so, however I suppose I am lucky because I had a general anesthetic for all of so so knew nothing
.
Hi had a pacemaker/defibrillator (aka an ICD ) implanted 6 months ago after surviving a sudden cardiac arrest. It can be a bit scary at first but I understand they cost anything from 10k upwards to mine around 23k so not something they would be giving you unless considered to be in your best interest. If you take that outlook on it I found it helps you to come to terms with it. Don’t be scared though op only takes about half an hour and normally no need to stay in. There is a specific ICD forum also. But we’re all here for different heart reason so if you just need to talk or need a bit of support there’s always someone to listen. Hope it all goes well for you. Let us know how you get on.
Had mine fitted 15/3/23 . Far bit of brusing not to bad pain wise . Pain you can't drive for 4 weeks after op . Had to slow down a fair bit too
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