ICD: Hello I have been referred for... - British Heart Fou...

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Cumberlandman profile image
37 Replies

Hello

I have been referred for ICD implant can anyone tell me of their experience please

Thanks I’m advancry

37 Replies
RufusScamp profile image
RufusScamp

I had one fitted about 18 months ago, a CRT with 3 leads. It's all done in one day under a local anaesthetic, and is quite straightforward. It takes an hour or so, but I was chatting with the nurses and surgeon all the time. Later, they do an x-ray to check it is in position, and a technician came to set it up, and show me how to use the remote monitor, which means they can read it from time to time without you needing to go back to the hospital.I was told to keep the dressing on for a few days, and had to be careful washing. You have to keep your left arm down for a couple of weeks, and if you drive, you need to tell the DVLA, and not drive for a certain time, (a week for me).

They prefer it if somebody can take you home as you can't drive yourself.

There is a good leaflet produced by the BHF telling you more about it, plenty on this forum can offer support and advice. Remember, they are offering it because they think it will help you.

Cumberlandman profile image
Cumberlandman in reply to RufusScamp

Many thanks for your reply much appreciated.

Consultant referred me last week following heart attack (stent fitted) last June. Diagnosed with heart failure and the medication they put me on keeping me going but that’s about it.

Thanks once again

Hi, I had an ICD implanted just under a year ago and haven't had any problems with it. I had a local anaesthetic and a strong sedative, so I was awake, but apart from a bit of pushing and pulling when the surgeon inserted the device, I felt nothing. Back on the ward in just over an hour, had a cup of tea and a sandwich, slept for about an hour, had an xray to check all was in place, and was home by teatime. I didn't have stitches, my wound was glued, which was much better. It took about 2 weeks to get rid of the glue residue, and I was left with a very fine 6cm scar. DVLA told me I couldn't drive for 4 weeks after, as it was a preventative measure, so I had to wait for my post op check up, by which time, my arm was fully mobile again. The only problem I had was a bad rash all over the operation site a few days later. The doctor thought I might have been allergic to the iodine wash they use during the op. It took 2 weeks to clear. I was quite aware of the device to begin with, but don't notice it at all now. You'll get all the info you need before you go home, including phone numbers to call if you have any worries at all. Hope all goes well.

Cumberlandman profile image
Cumberlandman in reply to

I thank you very much for the information. It’s early days so I don’t know how long the waiting list is, they don’t fit them at my local hospital in Carlisle - I’ve been referred to Newcastle.

Thanks for your best wishes

RufusScamp profile image
RufusScamp in reply to Cumberlandman

I had it done in Newcastle, and was very well looked after. They give you loads of useful information, and the food's not bad! I hope you don't have to wait too long.

Cumberlandman profile image
Cumberlandman in reply to RufusScamp

RufusDid they use stitches or glue to help heal the cut?

I’ve been referred to a Dr Marshall

RufusScamp profile image
RufusScamp in reply to Cumberlandman

I didn't see Dr. Marshall, but I think they use glue on all cases. The after effects depend on what sort of device you have fitted. Mine was a pacemaker, not a defibrillator. I would recommend writing down any questions you have, and making a note of the answers!

Callista profile image
Callista

I had an ICD implanted in Newcastle 6 years ago, and I too come from Cumbria. The device works but I did not feel they gave me sufficient information.I was not told it had an internal alarm fitted, I was not told I would automatically be banned from driving for 2 years if I lost consciousness when it activated, I was not made aware that the defibrillator clinic only works 9- 5 Monday to Friday and outside these hours you are told to phone after 9 on Monday which was not very reasssuring.When I needed help subsequently due to breathing difficulties the hospital was slow to respond to GP’s requests. Sorry to be negative but at least you can ask questions before it is too late.

Hope all goes well with you and I was just unlucky with my experiences.

Cumberlandman profile image
Cumberlandman in reply to Callista

CallistaYou have told it straight I appreciate that. I’m sorry that things were not straightforward for you.

I think I need to sit down and write questions down and take them with me when I go to Newcastle to see them.

Alison_L profile image
Alison_L in reply to Cumberlandman

Hi Cumberlandman. The 2 year ban only applies if they haven't solved the problem with your heart within 6 months of it firing. And, of course, that means the ICD will have fired to save your life, so it's a stark choice between being banned for 6 months (with a possible extension to 2 years) or being dead. I know which I'd choose. Info here - gov.uk/guidance/cardiovascu...

Also, if the pacing clinic is closed and you have a problem, a&e is always open. I'm not sure Callista's breathing problems would have been anything the pacing clinic could sort out - that's a cardiology problem.

I can't say I'm overkeen on having a lump of plastic & metal in my chest (I've had mine since July 2018), but it beats dying xx

Cumberlandman profile image
Cumberlandman in reply to Alison_L

Hello Alison

Thank you very much for the information. I agree with you it’s a better option than croaking it.

My heart attack happened when I was driving on the M6 coming home from Liverpool and I was heading north, luckily I saw a sign for Tebay services 1 mile so I knew I was in trouble and switched to the near side lane - I didn’t want to stop on the hard shoulder so I made it to Tebay doing 30mph got out the car and collapsed at a picnic table, help was on hand and the people who helped me saved my life so I thank them / I can’t remember events unfolding all blurry but I’m still here

Thanks again Alison I wish you well

Curlyman83 profile image
Curlyman83

I’d echo what others have said. I had mine implanted in Bolton just over a year ago. Op was done under local and the nurses and surgeon were brilliant. Unfortunately, I was placed on a very loud and noisy ward after my op waiting to be transitioned back to my original hospital - and I was there for bloody hours. Slept like a log when I got back.

My chest was a bit a mess for a couple of weeks post-of - the bruising was significant and the scar very prominent. Have to say, it’s healed really well and I’ve been left with a thin scar and a little protrusion from my chest.

The worst part is not being able to shower/bathe properly for a little time post op.

I was banned from driving for six months but my reapplication was seamless if a little frustrating due to waiting times. All back to normal now.

Good luck.

Cumberlandman profile image
Cumberlandman in reply to Curlyman83

Curlyman I thank you very much for the details you provided may you continue with good health going forward.

Everyone who has replied I’m grateful for doing so.

Soldierboy profile image
Soldierboy

I have now had three CRT-D (ICD's) insert the first being back in May 2011 and the most recent in September 2021. Due to other issues my first two were done under general anaesthetic, but the third under a local one. My ICD has activated five times, twice in 2011 and three times recently in Sept 2021, some ten years apart. Each time this has saved my life. I have had no problems in living with this device implanted into my chest, just don't play rugby! If your device activates then you can not drive for six months, hopefully I will be back at the wheel in March.

Cumberlandman profile image
Cumberlandman in reply to Soldierboy

Soldier boyMany thanks for posting.

Crikey sounds like your device has indeed done the job but sorry you had to find out the hard way.

I bet not driving is a bit of a bummer but hoping you can get behind the wheel in due course.

I’ve been told that the ICD is not a cure for my heart failure but it’s there for a cardiac arrest should that ever happen.

Driver11 profile image
Driver11

Hi, mine was fitted 3 1/2 yrs ago following CA. Done under local and you do know what is going on although you can't see it. No stitches but glued wound, told to keep left under below shoulder height for a while. Had problems sleeping for a while but its something you get used to and now don't even notice or think about it, good luck

Cumberlandman profile image
Cumberlandman in reply to Driver11

Hi Driver

Thanks for replying to me.

Hope that you don’t have any more cardiac arrests. Good luck going forward

It’s interesting to read of peoples experiences and I am feeling a little bit less anxious

Lezzers profile image
Lezzers

My husband is on his 2nd ICD & he's never had any issues with either one. Its a relatively straightforward operation to fit it, it takes about an hr and usually you're home the same day. There will be some pain for a few days but your GP can prescribe pain killers, my husband took co-codomol for a couple of days and then he got by on paracetamol. They'll be some things (raising your arm above your head, lifting etc) you won't be able to do for a few weeks while the device is bedding in. After a while you probably won't know you've got it. My husband has had a previous out of hospital cardiac arrest so we were more than grateful for his to be fitted.If you drive then it's 1 month no driving if the device is fitted as a precaution. If it's fitted due to a heart event or if it gives you an appropriate shock then it's a 6 month ban. The thing to remember though is, if it does shock you it's done its job and saved your life. If, during that 6 months it shocks you again the 6 months is a rolling period so it starts over again.

Although my husband's ICD has never shocked him, we do know that it's corrected his heart a number of times to avert a cardiac arrest which is the point of it being fitted. And just recently Papworth phoned him on a Sunday evening to say his device is showing he's retaining fluid and needs meds for that ASAP.

Hope this helps, if you have an questions I could help with, please ask. Good luck

Cumberlandman profile image
Cumberlandman in reply to Lezzers

LezzersThank you very much for your detailed response regarding your husband. It’s reassuring to read about his experience.

Daddo1 profile image
Daddo1 in reply to Lezzers

Hi my husband had an icd fitted this week after a cardiac arrest at home he was only discharged a day ago can you tell me it’s is very obvious if a shock has been given he had some large twitches in his sleep last night and I’m not sure what I’m looking for thanks

Lezzers profile image
Lezzers in reply to Daddo1

First I hope it reassures you to know it's a scary time for you both right now but it does get easier in time. The majority of people (though not all) are very aware if the ICD shocks them as it's a very large & usually painful shock. My husband starts massively twitching just as he's going into light sleep, sometimes they're quite deep jolts. They usually stop when he's in a deep sleep but it does always make you think!! Twitching is very common in people who've had a cardiac arrest, I would say if your husband feels fine then it's probably nothing to worry about. Unfortunately pacing clinics aren't open at weekends but if you have a home monitor you can do a manual download, phone them on Monday and ask them to look at it. Obviously if you're very concerned or he does feel poorly the A&E or NHS 111 are the answer.If you're on Facebook there's 2 closed groups that I'd highly recommend for support and advice, one is called ICD support-uk the other is sudden cardiac arrest UK (neither are limited to UK though), both groups are very friendly, informative, supportive & totally understand what you & your husband have gone/are going through. There's someone on the CA group who will be able to explain the twitching issue & why it happens.

I always think that people don't realise how traumatic it is to experience CA/CPR unless they've been through it.

I hope this helps, please let me know if there's anything else I can help you with, happy for you to PM if you'd prefer.

ph5019 profile image
ph5019

Hi,I have read your replies and they are very informative.

In case you are slightly confused, there are two types ( I have had both last year ).

One you have a general anesthetic, this is the subcutaneous ICD, inserted under the arm, this is a more modern version.

The other is inserted usually above the heart in the front, I currently have this type and it is normally inserted under local anesthetic and sedation is available which is what I had.

Personally I find the latter more comfortable to live with, but a lot depends on your anatomy.

Good luck and kind regards,

Paul

Cumberlandman profile image
Cumberlandman in reply to ph5019

Ph5019Many thanks for your input. And I wish you well going forwards in life.

You have 2 implanted devices - crikey.

It really is wonderful how advances in medical tech can transform our lives

ph5019 profile image
ph5019

Hi, just to let you know, I have one now, did have two for a short while,although the subcutaneous one was turned off as I had technical problems with it.It fired inappropriately, but it is well worth having, it gives you great comfort and peace of mind.

Kind regards ,

Paul

Bingo88 profile image
Bingo88

Had a pacemaker fitted just over 2 years ago. Didn't have any sedation at all. Just numbed all my shoulder up. Just felt a bit of prodding and pressure getting everything in place. You have to be careful lifting your pacemaker arm for 6 weeks above your head. While everything settles down. Prefer this operation to going to the dentist myself. Also a Pacemaker uk group on Facebook that is very supportive. Good luck Brian

Cumberlandman profile image
Cumberlandman in reply to Bingo88

Brian

Hello and thank you for your post,

Glad your procedure has gone ok.

No sedation brave man I dunno if I could do that so I doff my hat off to you.

Bingo88 profile image
Bingo88 in reply to Cumberlandman

I don't usually like hospital procedures at all and it was all done so quickly. I didn't want to just have sedation and still now what was going on. So decided to stay awake. Hope it goes well

Cumberlandman profile image
Cumberlandman in reply to Bingo88

Thank you Bingo / good man

Frequentshocker profile image
Frequentshocker

I was given a choice of ICD type following my idiopathic SCA 7 yrs ago yesterday. Id never heard of them until that point but the cardiologist explained the differences and left it with me. I opted for the standard ICD with inbuilt pacemaker and was so glad I did as both used many times since to save my life!Mot of the above has covered everything but do write a list of questions as its usual, once discharged to gp care, you get little or no support afterwards, no follow up appointment either.

Things Id ask, knowing what I know now are about follow up care, whether you will have a home monitor or attend regular ICD checks, what to expect if your ICD ever fires a shock (this will depend on how your meds control your heart issues) what you can/can't do re exercise, sports etc, when to contact the pacing clinic or A&E if you do have any problems, driving, and of course your immediate surgery and after care at home.

Most have been covered above so just a little of my experience of post surgery to add. The op is as explained, nothing to worry about and theyll ensure you rest before having someone take you home. You wont be able to lift your arm on that side for a while, no wrenching or pulling on it. I was wary of this for a few weeks worrying if Id pull the wires out! The box can be felt under your skin and may move a little as you regain movement with your arm and shoulder but it will settle in plave over time. You may need a pillow beside you to stop you rolling over uncomfortably in your sleep for a few nights too. I had stitches which started to itch as they healed, and applied my natural remedy for any infections. Its smelly but effective, a thick slice of raw onion! Onion absorbs infection and stops the itching so a pad and plaster over it to hold in place did the trick. Changed it regularly and 2 days soon cured the problem. I have a v neat almost invisible scar now. Less smelly is tcp or surgical spirit but it stings!

Once healed Ive had no problems apart from regular shocks but that was down to readjusting my meds as we couldn't get that controlled. My ICD has saved my life many times though and although each shock meant another 6 month ban I'm gradually getting more stable now and live in hope.

As my problem is due to regular VTs and AFs this probably wont apply to you as much but at first its normal to worry about what if your ICD fires a shock. Over time you'll get used to it and worry far less.

What to expect if it does happen? If you were to get an ICD shock its probably wise to call 111 or someone call 999 as you will need to be checked and see whats going on with your heart. Hopefully you will never have a shock from it but its there as an insurance in case you ever need it.

On my previous meds that didnt work Id usually feel tired and breathless then if not able to rest Id collapse pre shock and come round to find ppl had called an ambulance. With heart problems they will usually take you to A&E. Id then get taken to cardiac unit where theyd check if it was my ICD at fault or a genuine SCA problem. If you get a shock at any time its your ICD saving your life so an essential inconvenience! On my current meds I'm now much more stable, only v rare shocks but I now tend to remain conscious at the time and tbh Id rather collapse unconscious with it. I've had milder shocks over the last few years too, rested a while and carried on as normal but if in any pain or unwell I've ring 111 so don't be scared to do so if you ever are in that situation. An unreported shock shows up via my heart monitor and the pacing clinic usually ring to ask me to come in same day and get my ICD checked. They check and sometimes reset the pacing and I'm off home again within 15 mins. Its fairly unusual to have as many shocks but with me it was an unknown cause and I had allergies to the meds so my situation was very unstable for a long time. Now my current meds have stabilised and I'm used to it all but I hasten to say this is not the usual experience as the majority of people with an ICD sail through life with no problems at all.

I can totally understand now why I could not get my driving licence back but fingers crossed, I'm getting there! So will you too.

Another thing to mention is when you go through security screens at airports etc you must tell them you have an ICD so they will hand check with the machine. You can't have magnets near your ICD. I carry my card with details as proof when travelling and a small copy of it in my purse at all times.

I think the only real down side of having an ICD is you have to declare it for holiday insurance so the cost goes up.

You will also be advised not to carry your mobile phone near it too.

With all the worst points mentioned here, I must say I feel totally reassured with my ICD and wouldn't be here without it so enjoying many more years of life far outweighs any inconvenience. You have us all on here for support and you will soon feel reassured you have the protection of your ICD, the little magic box that means so much!

I hope this helps with your list of questions for your cardiologist too but most of all be reassured having your ICD is the best way to be protected should your heart need it at any time.

All the best and feel free to ask more questions on here if you need to!

Cumberlandman profile image
Cumberlandman in reply to Frequentshocker

Hi Frequentshocker

Firstly thank you very much for your detailed and informative post and secondly may you continue to prosper in life going forward.

The meds and doses I’m on keep changing since last June and the healthcare team have monitored me regularly I cannot fault the care I’m currently receiving.

I will write down questions to take with me when I get an appointment, just reading responses on here has reassured me somewhat.

Thanks again

Frequentshocker profile image
Frequentshocker in reply to Cumberlandman

I'm pleased to hear you are getting your meds balanced. It can take time if the first meds dont suit you well. Its a fine tuning game that varies from one person to another. I was great after my SCA and ICD fitted, no meds and was back on the dancefloor for hours again only a few weeks after but once on beta blockers life changed dramatically. Fortunately I'm on more suitable meds now and now working hard to get fit once again. I am so grateful to have my ICD and Id certainly recommend it if theres any suggestion you may need one. I hope it all goes well and you're soon feeling fit and reassured you have a lifesaving device fitted!

Do let us know how you get on.

Cumberlandman profile image
Cumberlandman in reply to Frequentshocker

HelloThanks for your reply

They put me on beta blocker (bisoprolol) after I had my heart attack but it didn’t agree with me in fact I became ill so it was stopped

At the moment I’m on Ticagrelor, Aspirin, Ivabradine, and they keep adjusting Eplerenone plus they want to try me on a lower dose of bisoprolol and also put me on Dagaliflozin

I’m on other meds too for other things.

I’m hoping I can tolerate bisoprolol

Gosh I don’t think I’ll be dancing very much lol. Used to be very sporty but that’s all finished.

Yes I’ll post whenever they sort me out

Thanks

Frequentshocker profile image
Frequentshocker

I couldnt cope with the tiredness on Bisoprolol. When they increased it to 5mg daily I couldnt function as despite giving it a fair trial I still got more shocks from my ICD so it failed to do its job anyway. After dropping back to 2.5mg and further shocks I was put onto Sotalol instead which caused an immediate anaphylactic reaction. They insisted I persist with them thinking it would settle down but it quickly got worse and after a bad fall down the stairs due to blurred vision (and nursing a broken foot then too) I had to stop taking them. Yet some people on here can take it without any problems so it really depends on each individual. I tried a few different beta blockers but 2.5 Bisoprolol seemed the best option available until another shock and concussion from that collapse put me in hospital again. I saw an electrocardiologist that time and he suggested Quinedine so I tried it and its been much better since. Its unlicenced in the UK and I've only ever heard of one other person on it but I seem far more stable on it now. It seems to lessen my VTs but not so much the AFs unfortunately so last year after a rare shock and my readings showed an average of 12 episodes per month I was also prescribed Diltiazem on top. Once again they made me ill! I just appear to have an oversensitivity to any blockers so my consultant recommended simply increasing the Quinedine. It seems to be the best option now as not much else they can do. On double the dose I get side effects so now Im at home a lot more I can rest when I feel the fibrillations starting to play up and if it persists then I take the extra dose of meds. I've come to the conclusion that one med doesnt fit all, we all have differing cardiac issues and its a case if trying until you find one that suits best. Ive finally accepted I wont ever get past the constant level of tiredness now, its part of my condition but I can make the best of improving my quality of life. A good positive mental attitude was difficult at first but it really helps. I've learned to listen to my body especially when I start feeling drained, and good sleep, a healthy diet and plenty of gentle walking is certainly key to functioning well. To have a second chance of life makes it well worth living it as best you can so lets make the most of it!

Fieldhouse profile image
Fieldhouse

Hi I have been following these posts and would like to thank you all for sharing your experiences. My cardiologist has wrote to a colleague recommending I be considered for an ICD. My question is how long did people have to wait for the procedure ? I am scared I may have an incident while waiting and not survive.

Lezzers profile image
Lezzers in reply to Fieldhouse

I see no one has answered your question, but that's probably because no one can tell you how long you'll have to wait. The waiting list can differ between different health authorities, the reason the ICD has been recommended, are you being monitored to see if meds help first etc. Why not contact your cardiologist or his/her secretary and ask where you're at with this. My husband is currently waiting for an urgent echocardiogram & was told the wait would be about 3 months, the referral for the echo was sent about 3 months ago and this is still showing as pending, I know of other people in different health authorities who've been referred and even though they've not been urgent referrals they've had the echo within 2-3 weeks!

Cumberlandman profile image
Cumberlandman in reply to Fieldhouse

HelloI waited from March until I had the procedure on June 21st

Hope this helps

Cumberlandman profile image
Cumberlandman

Just to update this threadI had the ICD wired last month

(Cramlington Hospital) day surgery home that evening.

Restrictions lifted after 4 weeks from the DVLA still tender and movement of left arm a bit stiff have drove the car managed ok

I would like to thank everyone who contributed to my thread and if I can advise anyone awaiting an ICD I will be happy to do so

Thanks

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