Replacement of internal cardiac defib... - British Heart Fou...

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Replacement of internal cardiac defibrillator

Callista profile image

Just had this done. It was really painful. Insist on a full anaesthetic not just a local. The NHS is just trying to save money at your expense. I screamed it hurt so much and I have had 6 children so am not easily scared!

Also what is this with keeping your outdoor shoes on while they operate. Can’t they spare the time for you to take them off.

I don’t know what this is about the NHS being under pressure. My ward was half empty and the nurses had time to chat amongst themselves rather than being flat out.

Just had my consultant appointment for January 2022 cancelled and replaced by a phone appointment. Is he really too busy that he cannot see me and he knows that six months in advance…

74 Replies

That sounds an awful procedure to have without a GA, thank you for the warning!

I'm afraid things have changed drastically in the NHS and I can understand how you feel about not seeing your consultant face to face next year. It's all very odd and not reassuring in the slightest is it. I think this is the way appointments will be from now on. Granted we don't always need to be seen, as there's no point if you just go along to say how well you feel. Telephone consultations can sometimes just leave us feeling a little uncared for.

I didn't know you could keep your shoes on when having a procedure. I'm having one soon and was hoping to keep my socks on to hide the nail polish on my toes, which I'm told I must remove beforehand. Op is in my chest, nowhere near my feet and I'm tall.

How are you feeling now?

Jean

I find that things are not communicated effectively by telephone and extremely difficult to intercept the continual flow of words from a consultant , who reels off technical jargon. Being a computer programmer I use lots of jargon but would not do so to a customer, and he would be equally confused if I talked that way. I don't know what it is but find foreign accents , even some regional accents, easier to understand when face to face. Must be body language. telephone appointments do not work with health ad risk a lot of mental health issues due to sheer frustration in not getting questions answered or even raised.

Some of us are not great communicaters. I am ok but did have stammer when a child, needing speach therapy. Teasing at school really knocks your confidence for life. I do not know how people worse than me can cope with telephone. I had telephone phobia into my thirties but fine now. Not good enough

My hearing is not good even with hearing aids so phone appointments are awful. I need to be able to lip read as well as hear. I've started taking a freshly washed mask with me if I do get an appointment face to face. It has a plastic insert over the mouth so you can see lips and I ask t hem to wear it. Some will, some won't. Some will take off their masks and just use a face shield. i even got a ridiculous phone appointment from ENT when I lost my hearing completely. It has to stop. My husband has a phone phobia and can't cope at all.

Must be awful for you. I Sympathise a lot . Must be so frustrating.

Annoying. It should be obvious to ENT that if your hearing's vanished, you can't hear a phone call. Brains? I had togo to the hospital one day to see the rhuematologist. I never got past his nurse. She took all test results to him . I assume he was locked away somewhere hiding.

I know just how you feel and think it is up to all of us to take a stand and refuse to accept these phone appointments. If I am prepared to drive for 5 hours to see my consultant, he could at least spare me 10 minutes of his valuable time. I am not good on the telephone.

I agree. I don't like talking on the phone and forget to ask things at the end. Once I got my report I had questions which I was told I could discuss with my GP. Its impossible to get an appointment so just left worrying.

Jean. We should not even be thinking that ‘telephone appointments’ are how it is going to be from now on. That is not a health service!! And we do pay the salaries of the 1,200,000 people in the NHS so we deserve a bit of care and attention in return.

True!!!.

Silverfox2 profile image
Silverfox2 in reply to mike2002

Well during a pandemic thats what they see as the safest option for all concerned.

Hi Jean from another Jean I have just had a pacemaker, defibrillator fitted 9 weeks ago

I had mine done at the royal Brompton in London

When I asked the doctor about having mine fitted

Would I get a sedition he said absolutely

On the day the anethetist came to see me and said

I’m giving you a big sedation

And a lot of local so it’s not to sore

Well think she hit me on the head with a hammer

Never felt a thing was away from my day bed for 3 hrs

Went to theatre or wherever at 11am returned at 3pm as the clock was above the door

So mine was amazing so hopefully yours will be fine

But my goodness why does the care vary so much

Good luck try not to worry

And do tell the doctor on your arrival that you want a good seductive so it does not hurt

Think what they don’t relies all our pain barriers different so we should all be assessed individually

Good luck

Hi Jean

Oh the predictive text in your message has made me laugh = I guess the seductive you've written should be sedation? I can live in hope I guess. 😂

I'm having my gallbladder removed so it will be a GA for me.

Jean

I don't think you'll get seduction on the NHS, private? Maybe?? 😱 My husband is having his ICD changed shortly, I'll let you know what he gets offered!! 🤣🤣

Enonykasper profile image
Enonykasper in reply to Lezzers

😂😂👍🏻

Which hospital was this?

Callista profile image
Callista in reply to Lezzers

Freeman, Newcastle

Luisbrady profile image
Luisbrady in reply to Callista

I’m sorry to hear of your horrendous experience ! I think it might be a different scenario when you are an in patient as I was treated extremely well there and the staff were wonderful. I was in severe pain after a third angioplasty there in 4 weeks and it had to be attempted in both wrists - further stent fitted. The nurses were concerned and kept checking on me and gave me morphine. I was very grateful. The hospital also saved my life 4 weeks earlier after a STEMI. So I honestly think you’ve been unlucky. - no excuse - but just felt the need to assure anyone going there that it is not always like that. If I was you I’d complain to PALS about your painful experience. It might help others in the future. Hope all goes well for you

Callista profile image
Callista in reply to Luisbrady

I am pleased for you that your experience was very different from mine but unfortunately this is about the fifth time I have had reason to feel unhappy about my treatment. I have had a complaint against this particular hospital under consideration by the ombudsman in London and while I cannot go into details they have finally come to a decision and have found several failings in care on the part of the hospital staff. I am not sure I can face all the protracted effort involved in yet another complaint but I have been amazed at the number of supportive responses I have received on this forum. The vast majority reporting bad experiences and only a couple saying their treatment was excellent.If you want some light relief Google “Newcastle Hospitals and consultants sex romps” which were highlighted in the national press in 2017 when the CEO was dismissed for gross misconduct. It may alter your rosy opinion of the system.

Luisbrady profile image
Luisbrady in reply to Callista

I think I was lucky yes but believe me I don’t doubt your issues with them at all. My own father experienced horrendous failing at same hospital as a result of which he had to undergo two rounds of OH surgery and bypasses in 7 weeks! It was awful seeing him having his chest opened up again only weeks after first time. And yes the hospital made a compensation payment as he nearly died. But I try to believe things can change and improve - - and it was 20 years ago - and I had no choice about which hospital treat me as it was a major emergency. So no I don’t have a rosy view of the system and can totally empathise with you and your situation. I really hope it works out for uou. Is it not possible to change your treatment to another hospital? I had to but only because I needed A&E treatment a few weeks later. By the way, I could not have been as brave as you!! I would definitely be screaming and had to have sedation for all my angiogram/angioplasty procedures!!😩

RufusScamp profile image
RufusScamp in reply to Callista

I have recently had two procedures in the Freeman, and I cannot fault them. COVID precautions were fully observed, and all the staff went out of their way to explain what was going on and why. I am sorry to hear you had such a bad time.

Really. So the pandemic has not affected anything. Your post is political and reported

Silverfox2 profile image
Silverfox2 in reply to gilreid1

Oh for goodness sake. This place has become so flaming right wing....

Silverfox2 profile image
Silverfox2 in reply to gilreid1

Also I didn't say the pandemic hadn't made things worse, but this governments erosion of our health care system down the years has not helped! Look at the news for the last few days.

Totally agree!

Glad to hear I'm not the only one. :)

You are right as far as I'm concerned! :)

Definitely not!

Aopl profile image
Aopl in reply to Silverfox2

Is it not successive governments of all political parties who have kept the NHS underfunded as well as the care system? They are all as bad as each other!

mike2002 profile image
mike2002 in reply to gilreid1

You can’t just blame the amount of money going in each year. What about the quality of NHS management - or more to the point the lack of it?

Partner20 profile image
Partner20 in reply to mike2002

Totally agree. The NHS is top-heavy in management, most of whom would not last a week in the private sector due to poor quality of work. No amount of money can solve inefficiency; the current funding would be more than adequate if the structure of the service was improved. The organisation is run like something out of the Dark Ages, unfortunately.

mike2002 profile image
mike2002 in reply to Partner20

Best health service in the world so we are told.

Not in my personal experience. I wouldn't cross the street to 'clap' them!

Partner20 profile image
Partner20 in reply to mike2002

We have come across some brilliant and caring GPs, nurses and consultants, but these are sadly becoming the minority, in our experience. It seems almost the norm now to be discharged from most specialties without a word of advice or any help whatsoever, leaving you to do your own research and often having to self-treat and self-test, too. We are becoming experts in several fields now through necessity rather than desire. Not just disappointing, but quite frightening that we need to be like this.

mike2002 profile image
mike2002 in reply to Partner20

Yes - it should not be the way it is. There certainly are some very good people but they are becoming few and far between and are generally as frustrated as the patients with the way things have become. To many now it is 'just a job' that can be easily manipulated to fit around outside personal commitments - it is no longer a 'vocation'.With that attitude, care and explanations given are the bare minimum.

Silverfox2 profile image
Silverfox2 in reply to mike2002

Well due to a mixture of how poorly the government has dealt with the pandemic, plus the devastation it has caused to the NHS staff (who are exhausted and burnt out by it all), apparently 70 per cent are now considering early retirement and 20 percent have already left. All paving the way for full privatisation sadly.

Silverfox2 profile image
Silverfox2 in reply to mike2002

No, I'd rather they all get a much deserved pay raise instead. :)

mike2002 profile image
mike2002 in reply to Silverfox2

Ah well that should all add a year or two to the waiting lists. I think I was told in late 2019 that they were short of 30,000 nurses. Could have been a higher figure!

Partner20 profile image
Partner20 in reply to Silverfox2

"All" get a much-deserved pay rise??? We have come across many NHS staff of all ranks, from desk staff to consultants, who do not only not deserve a pay rise, but who deserve to be sacked! Many would simply not survive in the private sector, but hang on regardless, with little accountability, in the public sector. Yes, many are taking early retirement, the majority of those being consultants and GPs, due to the Labour government interference with their pension cap rules, meaning that it is not worth their while to work longer. For the others, their public-sector pensions are a great cushion, as I know from many of my friends who were public sector employees, as their pensions enabled them to retire early, unlike others of us in the private sector. By all means, reward the deserving, but not everyone is.

Silverfox2 profile image
Silverfox2 in reply to Partner20

Oh dear.......

mike2002 profile image
mike2002 in reply to gilreid1

Reported!!!??? Is that a joke?

MDR1 profile image
MDR1 in reply to mike2002

I believe not a joke. Some people on this forum have a finger constantly hovering over the report button!!

mike2002 profile image
mike2002 in reply to MDR1

Yes. I read on another board somebody complaining about comments received back in response to a post they made. Somebody else chimed in with:

'I don't know what they said but it's totally unacceptable'.

Some closed minds around!!!

Keyboard Warriors!!

It seems the norm now to keep your boots on. If they are worried about smelly feet they could always drape a sterile sheet over your legs…Re pain during defibrillator replacement I have done some research on the Internet and from the evidence those who are small, with a low BMI , and the device placed under the muscle rather than subcutaneously are at particular risk of experiencing pain during the procedure and require sedation at the very least.

I fit all 3 categories although they did not know where the device had been placed when they opened me up as my notes were incorrect!

Having said that if you are petite it is better to have it under the muscle as small people are apparently more at risk of complications such as haematoma if it is placed under the skin.

Good luck ( but at least you are tall!)

I suppose a lot have fungal spores and these can infect your heart and grow in the valves. taking off footwear could release millions of spores if they are infected. Some people do not even know they have them.

MDR1 profile image
MDR1 in reply to thunderstorm2

That's why they ask you to stop using normal shower gels and shampoos a week before the procedure, and give you a special anti bacterial/ anti fungal cleanser to use. This kills most bacteria and fungi on the skin.

I was wearing sandals so my toes were exposed anyway so that excuse doesn’t hold water. Surely a sterile sheet would prevent problems. When I had an eye op at Moorfield Hospital in London I had to wear white long stockings but they were very careful and even offered me and my husband overnight accommodation so we did not have to travel back up north that evening. They were amazing compared to the treatment I have had locally.

mike2002 profile image
mike2002 in reply to Callista

NHS treatment is just a lottery at the moment. It’s a lottery whether you ever get seen and treated (well aware of that one). Then it appears to be a lottery whether your treatment is good or bad. Sorry you had a bad experience.

Hi that sounds horrendous I am very small and thin and I found it awful getting my icd in definitely not enough sedation and he had the cheek to tell me to stop moving, I could always feel it move under my skin I called it my third boob it stuck out so much, but it did save my life I just wish they could make it a bit easier when it is put in, it was awful, but an angiogram was even worse once again they said it was because I was so small, I have had lots of right heart catheters done, through my neck and a couple of heart biopsies, all with my boots and jeans on, scans and xrays as well, I live in Scotland, it must be a British thing

That's plain disgusting treatment. Complain.

I can’t believe they treated you like that, you should definitely make a complaint.

My ICD is on the RH side so I had to have a full anaesthetic and an overnight stay. No sleep as a dementia patient on the ward. Sent home with instructions to take paracetamol which didn’t do much. Was black and blue as well and had an infection on the wound which took 4-5 months to clear up.

Mine moves around and I can feel it.

Well, it sounds like you didn't have a good time. My was fitted under local and I think this is more for the safety of the patients . Being connected to the hospital via your bedside monitor allowing them to see all your stats so the doctor can call you in if necessary. All my recent appointments have been by video and they have been great. Give it a try you might be surprised

Callista profile image
Callista in reply to Driver11

I was only offered a phone call not video. I only “see” the consultant once a year and am prepared to drive a 5 hour trip for 10 minutes of his precious time but he refused to see me in Feb. 2021 as well, so last seen Feb. 2020. I have a bedside monitor but it doesn’t tell them everything. I was desperately ill but the monitor was quite happy so no one wanted to see me. When I eventually forced an appointment the consultant was shocked to see how I had deteriorated.Do not place all your faith in the monitor. A face to face is worth a thousand words on the telephone.

Driver11 profile image
Driver11 in reply to Callista

Hi Didn't mean to be short with you however my experiences with Harefield have been so different. Firstly they kept me alive following CA and I spent 2 weeks in intensive care and the another in high dependency ward. My ICD was fitted with a local in a full operating theatre, I think I did pass out but was realised that evening. Have been back for scans and regular appointments. Last August had bad weekend followed by call from hospital on the Monday to tell me I was in Afib, Changed my meds and put me on Rivaroxaban, was called for cardioversion 3 weeks later which again was done as day out patient but in full operating theatre. Others in my ward were having ICD changed or new battery fitted. Put in bed, full tests and taken down for the op, definitely no external clothes . Consultant call recently for video update and decided to discharge me from his clinic stating that the Pacing clinic would still keep an eye on me. My experiences have been so good sorry that yours wasn't. Good luck and try and get your appointment , what about calling the consultants secretary

Enonykasper profile image
Enonykasper in reply to Driver11

I had a pace maker , Icd fitted at the royal Brompton 9 weeks ago I was absolutely amazed Asked the doctor on my phone call

Would I get sedation he said absolutely

In the day the aenethatist came and said I’m not giving you morphine as I’m allergic to it

But I am giving you a big one

And lots of local in this shoulder as it will be sore for a while

I never felt a thing

Needless today I was dreading the procedure but was really pleased it made all the difference

It's unfortunate you had such a bad experience. I have to say that my experience since my heart failure has been amazing. My last 2 appointments have been on the phone and very helpful. However my next one is in person.I had an ICD fitted under local anaesthetic and sedation, and didn't feel a thing. Bedside monitor sends reports to them but I was worried about it moving so had a face to face appointment with nurse. While I was there the cardiologist who performed my procedure made time to come and see me.

So nothing but praise. Maybe it's regional.

Callista profile image
Callista in reply to MDR1

MDRI I think you are right it is regional. All those who had a good experience are from the top hospitals if like me there is very little choice in my area you are shafted. As it is I have to drive over 100 miles. I have had 6 stays in the Freeman and my consultant has never come to see me on the ward once, even after being in intensive care in another hospital for a week. I saw different people every time if I saw anyone at all.

MDR1 profile image
MDR1 in reply to Callista

That is appalling. I go to Yeovil District Hospital so not really a top one, but the cardiology dept has a very good name. They have even got involved to speed up other non-heart related issues for me.It is also a post code lottery because I was recently offered a procedure that would not be available half a mile up the road in Wiltshire!

Hope you get it sorted out and feel better soon.

Can I ask, how similar is the procedure for ICD to pacemaker? Does anyone know? I had a ppm fitted 2 weeks post OHS for a valve replacement and I thought I would be sedated (I was returning to the ward anyway). It was painful and lengthy, I was in the cath lab for 2 hours and I cried I was in so much pain. If this is a similar procedure for ICD, my heart absolutely goes out to you. It was a miserable experience, the Dr and team were wonderful but I'll never do it again without sedation, I'll insist or they can leave it

fantasyfanuk profile image
fantasyfanuk in reply to Alessa_

I have had similar experiences to you. A lot of pain while having my original pacemaker fitted without sedation and when I had it replaced with a larger biventricular device and insisted on sedation it didn’t work. When I was aware and again hurting a lot during the procedure I was told I’d had all the local and sedation that I could! I spent most of both procedures crying too. Dreading it needing replacing. And it sticks out terribly so that I catch or knock it, which can be pretty painful even 18 months on. However it is saving my life so got to be thankful for that part!

Alessa_ profile image
Alessa_ in reply to fantasyfanuk

I'm so sorry to hear this, that feeling of dread is very relatable too. I agree, it's doing a job and that's important, it's just such a shame it has to come at such a price to everyday comfort. I remember thinking there's no way that people walk out in 45 minutes and go straight home although this was how it was sold to me.I really do hope for better times in the future for you should you need a new device

fantasyfanuk profile image
fantasyfanuk in reply to Alessa_

Thanks for your kind thoughts Alessa. I agree about how it is sold to you as a minor procedure which won’t take long and you’ll be much improved straight away. It wasn’t and I didn’t! However I’m much better since a change in meds in February and enjoying being able to do more. I hope all is going well with you.

Alessa_ profile image
Alessa_ in reply to fantasyfanuk

Of course, I'm glad to hear that things are going better for you these last few months, onwards and upwards I hope. Thank you kindly, I'm hopeful things will settle down in time

Enonykasper profile image
Enonykasper in reply to Alessa_

I’m so shocked reading this My experience was so different

I asked the doctor will I get sedation while having my pacemaker, Icd fitted

He said absolutely

The aenethatist said I’m giving big sedation and a lot of local anethsetic

In your shoulder as it will hurt for a while

I never felt a thing and I was away from my day bed for 3 hours

How is the procedure not the same every where

Mine was done at the royal Brompton

Alessa_ profile image
Alessa_ in reply to Enonykasper

So pleased to hear that your experience was comfortable, that really is how it should be! I agree, there really should be a minimum standard here so that procedures are as painless as possible for everyone

I couldn’t have done this without sedation As it’s just such a big ask when you think about someone drilling holes in your heart

Getting a Icd came as a big surprise to me so I was trying to deal with that and the thought of a bad experience is shocking I’m new to this page very nice to meet you 👍🏻

Sorry to hear you had bad experience having your ICD replaced. I had mine replaced a couple of years ago under local, and although I could feel them pushing and pulling a bit it was not painful. I was chatting to staff most of the time and told them at one time when I could feel it getting a bit uncomfortable and they just gave me a little more sedation.I am a very petite person and do not weigh very much at all. My device sticks out quite a bit so not great to look at as I can see outline and wire going up towards my shoulder. I was worried that there would not be enough skin to pull over device!

I had the procedure done at Papworth and arrived early morning and left later in day.

I was scared about having it done but nowhere near as bad as I expected.

Hope you recovered quickly and it will be many years before having to have another change.

Callista profile image
Callista in reply to Pippy36

Glad yours was relatively pain free. Was it submuscular or subcutaneous as it seems to be the former that causes problems. Unfortunately they only found out when I was on the operating table that one of my leads had a lot of scar tissue which will shorten the life of the new defibrillator. If they had bothered to check at my pre op appointment I could have had the more complex op with lead replacement and anaesthetic in a full operating theatre and would then have enjoyed a full battery life. So much for our brilliant NHS….

Pippy36 profile image
Pippy36 in reply to Callista

It was submuscular.. I had had my ICD for 10 years so I am hoping this one lasts as long.

It's probably being done that way to save time but it's so wrong. You should put a complaint in.

I had this done, also with a local.

I have always had a GA for my four previous ICD replacements but I did have a transoesophageal echo last year with no sedation at all. It was horrible. I only found out afterwards that usually they use sedation - no idea why they didn’t offer me any!

It was the same with a gynaecological procedure I had done three years ago. It was agonising and only when I read about the procedure that they previously used GAs, then had switched to sedation and a local. I had nothing, no wonder the nurse looked really sorry for me as I lay there crying.

So sorry you had a bad experience. I was surprised too about the shoe thing. Before my angio at Harefield I had to shower a couple of times with some special stuff to kill bugs and make me all lovely and clean. But then they said it was perfectly OK to keep my trainers on which were very far from squeaky clean. Very strange.

IrisCarter profile image
IrisCarter in reply to dunestar

It is the skin through which the incisions are made which needs to be clean. If there are microbes on the surface of the skin the instruments can take them deep into the cardiovascular system. They are also not worried about airborne microbes because the wounds made are so small.

I'm so sorry to hear about your experience :( When I was in having open heart surgery a few weeks ago, I should think I saw my Consultant twice for about 5 minutes afterwards ! Otherwise it was his Registrar He's also not phoning me for 12 weeks after surgery. My follow up appt with me GP was over the phone as well !

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