I have cardiac conduction disease due to a faulty gene that affects the electrics in my heart. It is extremely likely that I will require and ICD in my near future. I'm only 40 and am extremely frightened to have such a piece of equipment in my body that, yes can save my life, but can cause decades of anxiety, disruption and jolts of pain for the rest of my life. Its a hard decision to come to terms with, don't have one and limit your life or do and face the prospect of it adversely affect your quality of life.
I would love for people to share their ICD stories with me to help me understand the pitfalls and positive aspects of this life changing implant.
Many thanks
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Spatz76
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Hi. I had an ICD Inplanted back in 2014. I have had no adverse affects from it & unless you tell people you have one fitted no one would ever know. I had mine fitted after my 2nd cardiac arrest so when I had my 3rd arrest the ICD kicked in whilst I was in the ambulance taking me to hospital. So it works which is very reassuring. Having mine fitted does not cause me any anxiety or pain and does not affect my quality of life. The only drawback I have is that I live on the Isle of Wight & have to cross the Solent every time I have a check up at QA. I consider this a small price to pay for the reassurance of knowing that I have a device inside me which could, potentially, save my life.
Hi, Spatz! My husband had one fitted in March this year, and he was exactly the same as you as the date of his procedure approached. For him, it meant that he was giving up any chance of resuming his career as a coach driver, as well as all his other concerns. He very nearly didn't have it done, but concluded that he'd rather be unable to drive for six months (you are automatically stopped from driving your car for that period if the defibrillator has to shock you, as you probably know) than potentially be dead. Now, it's been in place for nearly four months, the wound has healed beautifully, and he actually proudly shows off the slightly-raised area of his chest where it sits! It's become a talking point! Other than if someone asks him, neither of us really even thinks about it during our daily lives. You are a lot younger than my husband, and have a lot of life ahead of you, and the ICD will ensure that you can live it with confidence. I'm sure that you have also got all sorts of other medication and medical back-up going on in respect of your existing heart condition, as does my husband, so see that, too, as a big positive. Yes, he did find the site of the procedure a bit uncomfortable for about two or three weeks, as he was told to expect, but now, he barely notices it. The ICD should absolutely NOT adversely affect your quality of life. My husband's consultant told him that the chances of it ever having to shock him were actually very low, but because of the particular issue with his heart (he had a massive heart attack brought about by radiotherapy for male breast cancer), it acted as a reassurance that his heart could be almost instantly brought back to a more normal rhythm. I wish you all the very best, and you make the decision that you feel is right for you. Catherine.
Completely understand being anxious etc as it isn't something you would normally encounter. Having said that, it really shouldn t have a negative impact on quality of life. In fact if anything it would hopefully serve to reassure and your local hospital may have a specialist nurse or support group for you to speak to in person.
I'm younger than you and wouldn't be without mine. It is a personal choice but for me, Having it meant I could sleep better and have the confidence to do things I may not have had without. A bit of discomfort while it heals and a shortish period of being unable to drive is a small price to pay for having the gift of protection/back up. It is however a personal decision and you should definitely speak to your doctor about any concerns and worries you have. They'll know your individual situation so should be able to give you more tailored advice or information - that isn't to say here is great but just to remember to ensure your docs know your concerns. It is your right to be a part of the conversation and the decision making process. GMC guidelines state they're required to inform and engage patients as much as the individual wants. It can be easier said than done but it is our right and their responsibility!
Also....no question or concern is ever too small to ask ☺
Thank you so much for sharing your stories with me. All of them have same theme, an ICD gives you confidence to live your life, it doesn't affect your quality of life and it is an insurance that when it comes to serious heart function disorders, it’s better to have it than not. Your messages have definitely been reassuring.
My problem is a genetic mutation that has only started to present itself over the last two years and has only been diagnosed for sure last week. My heart electrical impulses come from all over my heart and in many different rhythms. It is generally doing its own thing and is very erratic. I have a pacemaker currently which was only implanted in March (as my bpm is low so I needed it to be able to take Beta Blockers for the fast rhythms) but the pacemaker has picked up many more AF and VT episodes than we thought I had as I don't often actually feel the arrhythmia, although I do have much anxiety knowing the arrhythmia is there (especially the VTs).
The hospital staff from consultant to specialist arrhythmia nurse have been great. It’s been a long road as it was unclear what was the underlying cause of my issues which has very recently turned out to be my mutant gene. An ICD implant has been considered from the beginning due to my rhythms but I've always been against it due to the worry about it firing off when I'm at work (I work in a big open plan office) or when driving. I was also worried about it going off incorrectly. Mainly if I honest I was worried about the pain of a shock and living with the anxiety of waiting for it to go off at any moment. The hospital knows about my concerns and have offered advice, understanding and given me time to work through it for my own piece of mind.
The part I am working through at the moment is trying to turn what I thought of a negative into a positive. This is of course just perspective. For a while I felt very unlucky that this has happened to me but now I'm starting to see that I am actually lucky that that this "journey" has happened and I get a chance to have a back up plan implanted as I may never have known about it until one day I wasn't around anymore. It’s the stark reality of this that is helping me realise I've got a chance to feel safe again. Bionic_swimmer called it the gift of protection, I like that description!
Does anyone have experience of being shocked they wouldn't mind sharing? (rogerctyler I know you have when in the ambulance but I’m not sure if you were awake and felt it) I know this is personal to everyone but I am worried if it happened it would be so bad it would knock me off my feet. I just wonder what it does actually feel like. I know it would never be pleasant but I have a high pain threshold so I’m hoping if I was ever shocked and conscious I’d be able to handle it.
Thanks again for your advice it’s been very helpful.
I just thought I'd share my story too. I'm 28. I was born with Fallots, and had no issues after corrective surgery up until recently. I had my ICD implanted about a year ago, and it hasn't gone off yet. Mine was prophylactic, meaning it's a precautionary measure in case anything happens.
YOU know it's there, but it's not noticeable. The scar is tiny. The procedure is done in less than a day from admission to discharge. And as Bionic_swimmer said, it's a gift of protection.
You'll probably get a remote device to send data to the hospital. This means you can do a 'remote' check every 6 months, and every other 6 months go into the hospital for a quick interrogation of it. That takes less than 20 mins generally (bar the waiting bit...)
The benefit of a remote device is if anything happens during the night, they know before you, and will call you to get things checked out. If it does go off, you can call the centre and they'll tell you what to do. If it's a single episode, they can do a remote download, and check data there and then.
Some real world situations you may experience...
*Airports - they're trained and deal with them well. They see thousands of people a day, so pacemakers and ICDs must be common to them. They known the machines and guide you through. Show them the card you get and you're fine.
*Work - honestly, telling H&S/first aiders the condition and what could happen scares them instantly, but after that when you explain it's all fine, they realise it's no big deal. IF anything ever happens, you know what to do. Work colleagues are generally amazed/curious about it. You're no different to before, so you shouldn't be treated differently. It does, however, fall under equality legislation, so you have a bit more of a legal backup if needed. (I didn't know this until recently tbh).
It does mean, as far as I know, that I can never get a private pilots licence, but I'm taking the positive of a personal back-up device as a bonus.
Thanks for sharing your story. I'm hoping I'm in the same situation as you in terms of the icd being prophylactic (new word in my vocab 😀).
Yes I can imagine the first aiders at work freaking out however I suspect people are already doing that every time I say I feel woosy or my arrhythmia is playing up. I think everyone I know will breathe a sigh of relief when(!) I get my insurance policy implanted. Not to mention my poor parents who are in shock about the whole thing.
To be honest I was away for the weekend and I was very nervous and on edge that something might happen as my fast rhythms seem to be more frequent. It did make me think that I'd rather be worried that I'm going to make a scene in front of people than worried I'm going to pop my clogs on my own.
p.s I'm scared of heights so being a pilot is probably not on my bucket list thank goodness ☺
Hi spatz I have recently joined this forum and just seen your thread. I too have recently had a CRT D fitted (a week ago)
You mention that you feel your irregular arrhythmia... and feel the faster rhythms too... which is what I used to have. As you say very worrying and feeling that the heart is out of control makes us feel constantly anxious and worried.
I can honestly say that in the last 10 days.... since my op.... what has been amazing is that I actually don't feel any heart vibrations! And realised this is what people with a healthy heart normally feel.
I also am feeling much more alert and the constant tiredness I used to experience has gone. I also don't get breathless when walking to the shops. I also used to feel my heart thudding if I walked any distance. Now I don't feel any heart tremors or rhythms at all.
I too worried about having the defibrillator in... which is there only as a precaution.... but as I am feeling so much better in regards heart rhythms...I honestly feel I am much less likely to have this issue anyway... so my fears have lessened considerably.
I feel like I have a much better quality of life already! And the device also stops deterioration of the heart and can in some instances improve your heart to a better function.
I do experience some discomfort from the device.... but only 10 days in and it is settling down already.... and based on others who have had in for some time ... they don't notice it there at all after a while.
For a long time I questioned myself and the doctors if this was the right treatment for me..... now I can honestly say it's been the BEST treatment just wish I had had it sooner.
I now feel free of worrying about my heart..... it's a great relief 😀
Good luck with your op and please see it as giving you a better quality of life... you are only young.... this device will give you peace of mind and a healthy future. Xx
Ps I am 55 and have lived with HF since I was 32..... which had got worse recently, hence the change in treatment. I now intend to live a good quality of life for many more years to come. As should you 😀 x
Thanks for your reply to my post and I'm really pleased that you are feeling great since your op. You must be feeling a little delicate as its so soon but sounds like you'll be raring to go in no time.
Just as update I've had my ICD implanted now, its actually 8 weeks old today. I now see it as my own personal paramedic. As you can see from my original post I struggled to mentally come to terms with the need to have it and wondered how it would affect my anxiety/life after it. I couldn't quite believe it wasn't going to be a burden and it made me sad. However, like you I've found its given me a confidence and peace of mind that I never thought possible after my diagnosis. Sometimes the cardiologists do know best
I've just got back from holiday which I booked to give myself something to focus on. It was the first holiday in 18 months that I haven't had crippling anxiety and I actually managed to relax. The majority of the time in the last week I forgot about my heart problems. It was brilliant! I need to book another!
Hi I had a cardiac arrest in September and I never imagined having something implanted in my chest. Once you get over the initial shock there's nothing to worry about. I now look at it as my insurance policy
I'm back to playing golf, gardening and household DIY
Hi I have just come across your post from a few years ago re an ICD implementation & while yours is an old post but my date is Tuesday & I’m very anxious about the op & the intimidating surroundings I read all replies to your post & they were encouraging to read I was just wondering how you got on with your op ? If you can remember. Thanks in advance
Thanks for your message. I understand completely about your anxiety and intimidation of the cath labs. Its a busy place with lots going on. Its easy to feel a little lost and small in a place like that.
I do remember my op, like it was yesterday. 😊 I was the last on the list on that day so I was waiting around until about 4pm I think. I'd had a pretty stiff upper lip throughout the whole process of diagnosis and procedures which had gone on for many months before but on that day I gave into to my feelings and let the nurses and doctors how frightened I was.
I'm glad I did because the nurses were so lovely and literally held my hand when they were preparing me for surgery. There were lots of kind words and patience. It still amazes me how much empathy those angels that are nurses have, even when it’s just routine ops for them.
When I was on the table I was literally shaking, your body kind of takes over in those situations. Its quite a slick process of them getting you hooked to machines and whatnot, preparing you for surgery, They do try and distract you. In my experience there is always a nurse there dedicated just to talk to you and keep you calm.
I was actually put under general anaesthetic for my ICD procedure. So I remember up to when the anaesthetist gave me the aesthetic and then remember waking up in recovery with the surgeon telling me it had gone well and wished me a quick recovery.
Once out of recovery I was determined not to stay in hospital overnight so within 4 hours I had eaten something, walked up and down the hospital corridor to show I was OK and I was out about 9pm and home.
So really the op in my case was pretty easy as I don't remember much. I remember waking and feeling relieved that it was in and all over. I had this sense of calm that I was now protected.
Post op was fine, yes its painful but nothing you can't bear and the pain gets better quickly within a couple of days I felt much better. Its surprising quick recovery considering its heart surgery. Neurofen Express with Lysine was my best friend for the first couple of days
I'll never tell you its not nerve wracking, you wouldn’t be human if you went into it without being nervous but just try to focus on the safety you’ll feel post op.
A couple of years on you'll hopefully be like me, hardly even notice its there anymore!
Just a top top tip, if you are on Facebook there is a really good closed group on there called Living with an ICD (support group). Its members are from all over the world and there are new people joining every day with the same concerns we all have as we start our lives with and ICD. We all have the same worries, concerns and questions. It’s a really good group and I would recommend reading the posts there even if you don’t post yourself. It really makes you feel like you not alone and are the same as everyone else in terms of your feelings. You can pick up some good tips there too.
Sending you my best wishes and I hope you are feeling much happier and comfortable this time next week. Good Luck for Tuesday x
Hi Spatz 76 your story is very encouraging. and I hope all is well. I'm a lot older than you and due to have a two lead icd fitted in a few weeks as a primary protection. I'm gradually getting my head round the idea of the insurance...though it's taken a few weeks! Just wondered have the leads veins etc given you any issues as im worrying about that a bit best wishes CS
I am very well thank you. It does take a few weeks to get your head around things. For me it was months! 😁
I have a dual chamber ICD so a few wires knocking about in there. I have had absolutely no problems with them at all. I have to admit I was quite paranoid when the ICD was first implanted that I would dislodge the wires if I lifted anything a bit heavy for example and I developed a phobia of falling over (rediculous I know) but nothing untoward happened and they stayed put. Honestly, if you follow the hospital's advice on limiting your movement in your arms for a few weeks then you'll have no problems either. It's hard not to worry about it at first but you'll soon find you have no problems with the wires.
Hello spatz sorry only just saw your reply been worrying too much and got distracted!
I'm glad its working out well for you and no issues with wires etc. I'm still getting my head round the idea but almost there and your account of your good experience with the device provides confidence. Best wishes cs
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