Pacemaker Anxiety

[Aoki]

I am shortly to have a biventricular pacemaker fitted and have opted for defibrillator back up. Was very pleased when this was suggested for my heart failure for which medication treatment is restricted by my kidney disease. (Yep. I'm a bit of a wreck !) Now the date is approaching and I'm having cold feet. I'd greatly welcome hearing of others' experience, hints, tips etc.

[Westie2012]

I’ve had a pacemaker since 2020, I was so scared especially on the day , you can choose to have enough sedation to sleep through the whole procedure or be awake . I didn’t want to know anything about the procedure so I was asleep all through. The waiting for the procedure is a nervous time . I was allowed home the same day .

[Aoki in reply to Westie2012]

Many thanks., Westie, for your helpful reply. I'd love to know how you got on after the procedure. How long until you felt ok? Did it improve things a lot/ a little? I gather they don't always improve things for heart failure.

[Westie2012 in reply to Aoki]

you’re very welcome , to be honest I wasn’t prepared for how much pain I’d be in, I thought , quite naively that I would only have a small incision and not really be in much pain , I felt that the cardiac team play down the procedure so as not to worry the patients which I can understand . When I was waiting for my turn to go to the procedure room someone talked be through a few things, said how routine the procedure was and that they do 7/8 a day . It’s routine to the cardiac team but not to us the patient who will be going through a scary time . I was in so much pain , I couldn’t put my left shoe on or use my left side without it really really hurting . It took a couple of weeks before I could look in the mirror at the pacemaker site, it felt very strange , very heavy and chunky , after all I had a piece of metal in my chest . I was very unlucky and had very rare complications after having the pacemaker , I won’t go into detail as I dint want to worry you , what happened to me has a less than 3% chance of happening so I’m sure you’ll be fine . I had a very long recovery due to the complications . My father in law has a pacemaker /defibrillator and he sailed through his procedure , no complications at all . Once I’d recovered from the complications I did feel better and the symptoms I was having have gone , I have tachycardia bradycardia and heart pauses . The pacemaker has stopped the pauses , and helps with the bradycardia . I’m on betablockers for the tachycardia . Sorry it’s a long reply , hope it helps . x

[Aoki in reply to Westie2012]

Many thanks again Westie. . Sorry to hear you had rather a bad experience with the procedure but great to hear that once that was behind you you felt better than before. Also good to hear about your father in laws good experience. Thanks so much for replying

[Westie2012 in reply to Aoki]

I got a vshape pillow before my procedure, highly recommend them to anyone who’ll be having a pacemaker , wear button up shirts & pjs they’re much easier in the first few weeks when you have to be careful not to raise the arm on the side of your pacemaker , dry hair shampoo until you can wash your hair . I took a list of questions to ask the cardiac team before procedure , phone , headphones and charger , a book to read and a warm jacket or dressing gown and slippers to wear over the hospital gown while waiting . It’s very chilly in the procedure room too . Just a few useful tips x

[Aoki in reply to Westie2012]

Dear Westie. Very many thanks for all these v useful tips espescially re the v shape pillow. I shall definitely get one as well as unearthing the button up shirts etc. Also the "stuff to take to the procedure " ideas. I feel better about the whole thing already. Xx

[Hylda2 in reply to Aoki]

I was tucked up lovely and snug!

[Aoki in reply to Hylda2]

Sounds great! Rather looking forward to the snug bit!

[Hidden]

Hi Aoki, My PM is almost 10years old, so I'm nearing a battery change at the very least. I'm in a different position to yourself as I was fitted with it due to Complete Heart Block, and already in hospital.

Alternatively to the battery change, subject to the results of a recent scan, it's suggested that I'll be fitted with a CRT-D device to aid my Heart Failure. I'm led to believe it would increase my Ejection Fraction, however I'm fairly hopeful I won't need it.

Best advice I can give, is to just let them get on with it, and take on board the advice afterwards.

[Aoki in reply to Hidden]

Many thanks for your reply, Heedio. It's really comforting to be in communication with other people with first hand experience. Its the CRT-D device they are planning for me . My fingers are crossed!! I'll post to let you know whether it improves things for me in due course. Thanks so much for replying.

[Blearyeyed]

As a bit of a wreck myself , I understand how you feel.All of us feel cold feet to some extent when a procedure is coming up , even if we know it is going to make life a lot easier after we have had it, it's that fear of the unknown and completely natural.

I have not had a pacemaker fitted as yet , so I can't talk about the details but I am sure that the cardiac team you are under will do everything in their power to help you understand what is being done and help you be as comfortable as you can be with your choices on the day.

I do have friends with pacemakers for various conditions whom received them at different times in their life . All I can say is that I'm sure none of them regretted the decision and the improvement they got back, even if they needed a little time to get used to the feeling afterwards.

I hope things go well for you too, take care , Bee

[Aoki in reply to Blearyeyed]

Thanks so much for your reply, Bee. Great to hear that your friends with pacemakers are all benefitting from having them. I'm trying to avoid too much googling about the whole thing as I know you usually only hear the downside of anything you're trying to find out about and sure enough when I DID google I learned that the chances of the pacemaker improving my condition were 70-80 per cent. This did rather depress me though the odds are really pretty good. Trying hard to look on the optimistic side and your reply has really helped. Best wishes. Susan

[Blearyeyed in reply to Aoki]

Glad it helps. I know it can be hard mentally to keep calm before any operation. If you have any questions you can always ring the cardiac nurse at the hospital or get help from the BHF helpline.But I find it's often a good idea to try to do things that relax and distract me before a big appointment or procedure .

As well as helping to make the time pass quicker , as we do get into a habit of clock watching up to the procedure it helps to keep your symptoms and feelings of Anxiety managed , and this is a big help to how well you cope with the surgery and recovery.

Good luck , I will be rooting for you , Bee

[Aoki in reply to Blearyeyed]

Hi Bee. I thought I'd posted a reply earlier but it doesn't seem to have registered - probably forgot to press the blue button as am not at my most efficient at the momen! Am trying to keep calm -- my secret weapon is BBC Sounds on my mobile phone which I'm listening to non-stop -- especially serials from ages ago . What a great invention. I am feeling a lot better for all the helpful messages on here. Thanks so much for your good wishes. BW Susan

[Blearyeyed in reply to Aoki]

Don't worry , I do it all the time , hugs , Bee

[Bingo88]

Good morning Aoki. Please try to keep calm with your forthcoming procedure. I too have C.K.D and I had to have a pacemaker and I am not good with hospitals and operations but I know we have different experiences but I found it easier than going to the dentist. They said they could make me drowsy. So I said I would rather be awake than half asleep. They put some numbing stuff on my shoulder and I never felt the cut to insert the pacemaker and wires into the pocket They made. I just felt a bit of pressure and prodding getting it in place. And as soon as I was back on the ward I was walking around feeling great. I accept some need more recovery time than me. Then you can't drive straight away for a few weeks. You need to keep the arm below shoulder height and its difficult to sleep on that side for a few weeks. Best wearing button up shirts while everything settles down. Anymore questions just ask away. Brian

[Aoki in reply to Bingo88]

Many thanks, Brian. As noted above I'm listening to nonstop BBC sounds to try to keep calm. It's largely working! Wonderful to hear about your very positive experience. So helpful to know just what you felt during the procedure and afterwards. I shall dig into my my wardrobe to find a stock of button up garments. I may well be coming back with more questions after the pre-op assessment and chat with the HF nurses which is the day after to-morrow -- oh heck -- another episode of Paul Temple mysteries on Sounds is called for !! Best wishes Susan

[Bingo88 in reply to Aoki]

Hope it goes well for you. Take care. Brian

[Letsallhope1]

good morning Aoki,

I’ve had my first pacemaker fitted in 2000 flowing major open heart surgery as my heart would not beat by itself anymore.

The surgery is THAT safe! Since then I’ve had 1 battery change and an upgrade to pacemaker/icd CRT which is helping synchronise both ventricles.

As someone else advised on here, make sure you discuss your anxiety so that the sedation can be quite heavy and you’ll sleep through the procedure.

Word of advice, really take it easy and follow to the letter the instructions post surgery ie. Not driving and not lifting your arm or heavy weight for a few weeks, really pays off. As a busy mum I started to do heavy duty jobs too early and one of my leads moved a bit and it is now protruding and be quite visible under the skin (luckily no pain or no need to reopen to reposition.

All the best!

[Aoki in reply to Letsallhope1]

Hi Letsalhope. Great to hear that you are doing well after a really bad experience twenty years ago. I must count my blessings that I could even consider not having the pacemaker -- my quality of life is not too bad without so I guess I'm really fortunate to be considerd for one at all. But I'm aware of having really slowed down over the last 18 months and I'm really looking forward to an improvement once I've got through the dreaded procedure. I'm already feeling much more up forit after getting all the very helpful replies on the site. Very many thanks for yours. Best wishes. Susan

[Pouchielou1972]

Hi Aoki . I had an ICD fitted in Nov 2022. There was initial pain for the first 2 or 3 days, but only a little. I expected the pain to be a hell of a lot worse. It was just slight discomfort after that whilst it settled in. They will advise you not to lift your left arm above your shoulder for a few weeks to allow the leads to settle into the heart tissue. This is really important to heed to this advise, but at the same time, they will also advise you to ensure you do move your arm gently to avoid frozen shoulder.Once I got the all clear to lift my arm above my shoulder, I must admit, weeks of sticking to the rules and not lifting my arm above my shoulder meant that as much as I now tried to lift my arm, meant that my arm seemed to be stuck, but thankfully this eased up after a few more weeks and I'm now using it as normal and also able to sleep on my left side again.

Wishing you all the best with your ICD....it really has been a life saver for me and I don't notice it now.

[Aoki in reply to Pouchielou1972]

Hi Pouchielou . Many thanks for your very helpful reply. I shall certainly keep in mind the advice re arm raising. So good to hear you're now feeling ok and not even noticing the device now. I must say that is an aspect of the whole thing that's been bothering me -- the idea of having an electronic device inside! All these positive messages have been so helpful. Thank you for your good wishes. BW Susan

[BeeBee79]

Hi,

My ICD/pacemaker was put in almost a year ago after (age 43) I had a sudden cardiac arrest on holiday with my family. I personally couldn’t wait to get it in as I was petrified it would happen again.

I was sedated during the procedure and I remember thinking it’s definitely more uncomfortable than an ablation. I just kept asking for more drugs

There was more pain felt afterwards than what the hospital said there would be. I needed help getting dressed and sleep was VERY uncomfortable. I would advise looking into V-cushions if you don’t already have one.

I’d say it took a couple of months of getting used to a heavy feeling in your chest bit I couldn’t be without mine. I even love the scar and the little outline of the ICD on my chest - it’s reminds me everyday of how lucky I am.

Good luck with whatever you decide x

[Aoki in reply to BeeBee79]

Hi BeeBee. Many hanks for your reply . It's great to read your very positive approach. I guess I've been really fortunate in that for quite a while after I was diagnosed with HF I felt pretty ok -- once I'd got over the cause of it which was a serious brush with sepsis. I felt I had sort of got away with it. But the last year or so I've been aware of gradually getting slower and slower. I think I do really need the something now and I'm told the pacemake is my only option thanks to the kidney problems also due to the sepsis episode. I am now determined to focus on how fortunate I am to be getting the device AND having a really nice cardiologist who'll be doing the op. And on getting in helpful things like the V cushions. Thanks so much for your good wishes. BW Susan

[Deejay62]

Hi I had a biventricular fitted because I have dilated cardiomyopathy, and I was in heart failure when they discovered I had atrial tachycardia coming out of my AVnode, which was stopping my heart from functioning, so I had an AVnode ablation then a CRT-P fitted.

A few years ago when the battery was running out and my heart function got worse, I was upgraded to a defibrillator, because I was considering heart transplant. I haven’t received any shocks so far and it’s been around 5 years

I had cold feet too. It’s the not knowing. The second time I had it done things had changed completely from the 7 years before. It was a lot more comfortable and caring.

[Aoki in reply to Deejay62]

Sorry slow reply Deejay. Life got in the way! I'm so encouraged to hear that your defibrillator hasn't been called on in 5 years. The idea of it coming into action does intimidate me. I have now been in for pre op assessment and a chat with the HF nurse who was very encouraging and nice so I'm feeling more reassured. The big day is Friday so I'm gearing myself up.!!!

[Deejay62 in reply to Aoki]

Take it slowly and try to follow all the instructions, don’t forget you can still ask questions, and keep us posted when you’re ready to. All the best.

[Aoki in reply to Deejay62]

Many thanks. Will do

[playcards]

I had a pacemaker/ICD fitted 5 years ago. I was not, I thought, a good candidate as I very much didn’t want it, am a super-whimp and not good with pain or discomfort. HOWEVER all went fine both during and after, very little discomfort at any stage. Subsequently I have had to have an AV node ablation and, again, no problems. Don’t know if this is a majority or a minority experience but good luck with yours. And thank you NHS!

[Aoki in reply to playcards]

Hi playcards. Thanks so much for your helpful reply and sorry for my slow one. It's been one thing aand another over the past week. Really great to hear from a fellow super wimp who has had a good experience of the dreaded procedure. And Indeed thanks NHS -- really getting a rolls royce service on this. BW Susan

[Qualipop]

After being forgotten for 2 years ( He'd been told he needed an urgent pacemaker), my friend's husband finally got one when he was 88 last year. He says best thing he ever had done and no problems at all. A little soreness at the insertion site and he had to put some padding under the car seat belt for a couple of weeks but that's all. His only problem because he isn't at all tech minded was understanding how the monitor works but the pacing team gently explained it to him. He had one phone call from them advising him to reduce the dose of one medication. The actual operation was very straightforward

[Aoki in reply to Qualipop]

Hello Qualipop. Sorry slow reply. Great to hear of your friend's husband's good experience --espescially as he's even older than me! Like him I shall certainly need a lot of help to get my head round the tech. Luckily my tech savvier sister is coming over so hopefully she will sort all this out. As noted above I've now been for the pre op assessment and chat and am feeling much more reassured -- I only hope that lasts until The Day now alarmingly near -- Friday!! BW Susan

[Qualipop in reply to Aoki]

One phone call and they will talk you through setting it up. Once connected it's completely automatic. He doesn't have to do anything at all.

[Aoki in reply to Qualipop]

That's really good to know. Many thanks.

[EMBoy]

Hi Aoki,

Please don't worry about having your pacemaker fitted - the procedure is not as bad as it sounds.

I have a dual lead PM, and the procedure under local anaesthetic took about 40 minutes. I wasn't offered any sedation, but there was no pain during the implantation, just a lot of pushing and shoving to get everything into place. They make you lie on your side, and cover your face so you can't see what's happening, and this is a bit uncomfortable.

I believe the procedure for a biventricular PM is a little more complicated and takes longer as there are three leads to insert, so you may want to take advantage of any sedation offered.

Although the cardiologists make light of the procedure (it's routine for them), it is still fairly major surgery, so you are bound to feel pain afterwards. For me, it lasted about 10 days, gradually getting better, but I had to sleep sitting up for the first week as it was too painful to lie down. In the hospital, I was offered a choice between co-codamol and paracetamol for the pain, and I opted for paracetamol which did the job nicely.

Just before I left hospital, one of the nurses said to me that my pacemaker would give me a new lease of life, and she was quite right. I can now live a normal life.

Good luck - I'm sure you won't regret going through a couple of weeks' discomfort that will change your life.

[Aoki in reply to EMBoy]

Hi EM Boy. Sorry slow reply to your message which is really encouraging. I have now seen the counselling people and they indicate that I'll be pretty heavily sedated -- may even not remember the procedure afterwards!! -- so that's reassuring. But I'm shocked to hear you weren't offered any sedation at all. That sounds tough. I'm now really looking forward to the new me post procedure. I'm so grateful for the replies received here which have all been so helpful. I've already procured a V shaped pillow for sleeping sitting up. It arrived from Amazon this very day!

[Callista]

I have had a defibrillator for several years. My only advice would be to check that you are aware of the automatic 6 month driving ban if it fires and 2 years if you lose consciousness. Admittedly it is worth it if it saves your life but not if it goes off in error as the DVLA are not prepared to take the consultant’s opinion into account.

The other problem I had was when they replaced it after 5 years and insisted on doing it under local anaesthetic. It wasn’t a good experience!

[Aoki in reply to Callista]

Hi Callista. Very many thanks for your reply. It's been so helpful to hear people's personal experience with this , to me, rather terrifying prospect. Perhaps luckily the driving issue is one problem I don't have as I don't drive -- and never have done. Yep. I date back to the dinosaur age! Very sorry you had a bad experience with the replacement. They sound pretty keen on sedation where I'm going. I only hope this proves correct!!