Hi how do you know if you dislodge a lead

[Kimmykib]

I have had my ICD fitted for a week now had my wound check and everything is healing nicely but i am so worried that i may dislodge a lead i have been told a week not too move my arm and then yesterday was told 6 week am confused and worried can anyone help

[rogerctyler]

Hi. I had my ICD fitted back in 2014 & was given no such advice. If you think about it the wires go into your heart & are therefore far too long to be dislodged. Just be a bit careful until the wound heals fully. Keep it dry if you can as this helps the healing process. I hope this reassures you.

[Kimmykib in reply to rogerctyler]

Thank you that is more reassuring i keep being told alsorts of different advice and i dont fancy going back in to have more surgery lol

Just to ask how what time frame have you been given before your battery will be changed ??

[rogerctyler in reply to Kimmykib]

I was told 5 years but the battery is continuously checked via your carelink monitor & also during your 6 monthly checkup at the hospital in which you had the device installed so there is no need to worry about it running flat!

[Kimmykib in reply to rogerctyler]

Wow i have been told 6 to 9 years and as low as 4 years and the list of things that effect it is much longer than i first was informed its crazy how what i have been informed by so many different professionals and i i have my first check in 5 week so i will find out more because when i had it check the day after fitting i was rather unwell so didnt get much chance to ask any questions

[Ktomoph_ in reply to Kimmykib]

hi kim - here is a link to hopefully allay your fears re of what will/or may affect it -

heart.org/HEARTORG/Conditio...

Also look on the pacemaker club site - this is an excellent site to put everything into context.

pacemakerclub.com

[Ktomoph_]

Hi kim...I had device fitted end of August - when told not to lift arm above head, no lifting heavy things, sleep on back for first week and then opposite side to device for few weeks after, to be fairly careful and no yoga until after 12 week check - even though most of it made sense - I did ask why. The answer is to allow time for the tissue to grow around both the device and particularly the leads.

And I am with you on that one - I too don't want to have to go back to have leads put back in place through surgery!

And battery replacement - I was told 10-12 years. Think that this is plenty of time to forget about it being there and not fret as much as we may now. But for peace of mind do check, as it depends which one you have. As roger says, no need to worry. They are indeed incredible pieces of kit!

[Kimmykib in reply to Ktomoph_]

Thank you hun i didnt get the same advice as you i am finding it difficult because i am the one who does everything and especially for my kids so i am trying to find ways round it without causing myself an injury lol

Thank so much for your advice and rogers too its been so reassuring to get advice from people who have dealt and experienced the same as me so happy i came across this page 😁😁😁😁

[Ktomoph_]

Hey kim.....you have your hands full!......I have the luxury of time that I can use to sit and research it all.

I was already booked to travel across the UK by public transport 6 days after op - could not and actually would not cancel unless I literally was too ill. I too was fretting inside about so many things - all those 'what ifs...'

...'what if someone bangs into my left side?.....how will I lift my suitcase on and of buses and trains?....what about the security barriers in stores etc?....where should I hold my mobile?...suppose I forget and lift both arms up?.... what if I stand next to something with a magnet?...what if I roll onto my left side in the night?...'......omg the list was endless! Most of these thoughts came during the latter part of each day and into the evening. So, I made myself delay answering any of these till the morning. And of course, everything was logical in the morning. A tired mind is a worried one!

To assist my worries about people bumping into me when I was travelling(as it was only 6 days post op) I wore a long wrist tube bandage and held arm up to my body creased at elbow. I think it may have helped to be a subconscious signal - something to avoid.

It is a difficult one for you with children, but I will say with conviction, no lifting yet!

Good luck kim and wish you good recovery.

[Kimmykib in reply to Ktomoph_]

Awwwww thank you so much and i did push myself because i took my little mix concert 6 days post op and although i was tired after i managed to go and enjoyed myself and so did my daughter and i am a very strong willed person and very mindful and positive person too and have had nearly 2 years of testing for cancer and finally the outcome wasnt cancer (thank god) i have 2 really rare conditions and one is called sarcoidosis and then elevated to cardiac sarcoidosis which then led to me having my defibrillator fitted

I did research as much as i possible could and have been told different info from some many different people so i am just trying to follow the general advice and now i have the amazing advice from people on here i am a very logical person myself and work better with knowledge so know and planning is better for me

[Heartlady1]

Hi Kimmykib.... I had my device fitted just over 5 weeks ago... And I agree that I was told different timescales within different literature. I checked with my IC D nurse who said some of the messages gave changed over the years... as this is still quite new technology. They didn't have this avail when I was first diagnosed 20 years ago. Ok so the nurse told me not to lift my arm above shoulder height for first 2 weeks. Following that you can, butonly gentle movements above head height. Also no heavy lifting ( even to pulling washing out of washing machine... her example) with the ICD arm side. I have been told no lifting till my check op... 8 weeks post op. I too worry about wires becoming dislodged... which they told me can happen if we do too much too soon. And as you say none of us want the op again. I just think take it as easy as you can .... And keep that arm lowered as much as possible. Try to be gentle with yourself.... And get any help you can. I have my shopping delivered now.... And the delivery men have been fab when I explain I am not allowed to pick things up... they bring all shopping in and unload... And put away heavy stuff. It's only 8 weeks...i am happy to rely on others as much as I can to ensure all settles down well. Good luck x

[Kimmykib in reply to Heartlady1]

Awww thank you xxx

[laura_dropstitch Heart Star]

I've had my ICD over four years so can't remember specific advice, but think it was six weeks of not raising left arm above shoulder height and not doing any lifting (or hoovering - yay!) for same amount of time. I had a few accidental over-the-head stretches when half asleep and no harm was done, but I think it's probably better to be safe than sorry. I was breast-feeding an 18-month-old when I had my ICD fitted. I did try to get family members to pass her to me/turn her and I supported my left arm with pillows when I could, but this wasn't always possible, so I must have been doing some weight bearing etc, but I did it REALLY carefully. My daughter had an annoying habit of repeatedly punching my chest when feeding, right on my wound. Again, all was fine. So all in all, be as careful as you can be but don't panic unduly about the things you really need to do to get through the days.

Battery wise, I was told 5-8 years, but at my last check they predicted another 8 years of battery power left, which would make it more like 12 years. I think battery life varies a lot depending on what your device does. Obviously a shock uses a lot of power, so then you'd need it replaced sooner. If you are lucky enough not to need a shock, it will probably potter away quite happily for the best part of a decade or more. I imagine they'd check the battery if you did receive a shock and it's checked every six months as a matter of course, so you should have a fair bit of notice before replacement.

The first few months are horrible, wondering if it's OK, worrying about every twinge, questioning whether you should/shouldn't be doing things... But you do get to a stage where you carry on doing what you always did and barely give the device a second thought.

[andrew4322]

As far as I understand it they ask you to be careful because the tissue needs to grow around the wires as someone else said, then it’s all cushty from then on. I took it carefully and no problems, just a small wound infection antibiotics saw to.

Battery life about 10 years for me (CRT-D device)

Weirdest thing, apart from feeling it and the nightly checks when you definitely feel it working, is the conversations with H&S people and first aiders which goes something like

“Do you have a defib on site”

“Yes/no”

“Well, that doesn’t matter anyway because I have my own personal one”

And then calming them down when you explain what it’s for. I’m an expert now!

[Kimmykib in reply to andrew4322]

Awww thank you and will definately use that one and thank you everyone so much for all your help and advice its helping me cope and smile too xx

[x4251869]

Hi

Had my ICD device fitted in March 2010, had the ICD checked last week informed that the device still has three years left in the tank.

Don't worry to much about how much battery life you have in your ICD, your hospital will keep you well informed.

[Freebird4ever]

Hi , I had my icd in August and told to not raise arm above shoulder for 6 weeks, no lifting with left arm or heavy weights, regarding the leads everyone thinks that they might become loose but they should have checked device was working properly before you were discharged, they will checkout the device again when you have your six week check up.

Freebird4ever

[Beffohol]

You need to keep your arm in a sling or supported only for a couple of days after the procedure...then you really must use it or the healing process will make it restricted BUT you must not raise your arm above your head or carry heavy things for 6weeks (harder than you think😁) to allow the wires to embed properly. I was totally paranoid about dislodging them and was anxious about the pangs I felt but was reassured by others on here that all was as expected and normal....sure enough at my 6week check up all was well and healing nicely.... Just have a bit of patients and give yourself healing time....I know they call it a procedure but it is still your heart...YOUR heart...and you need to be reassured that all is well 👍

[holidaylamb]

Just got on this site Pacemaker fitted 3 years ago and last ouple days a large bruise and a lump size of marble has appeared at side of the pacemaker site Have experienced more episodes of collapses and when come round pain across chest This is new and woondering if anyone had this and any advice

[Lezzers in reply to holidaylamb]

Can't advise bout the bruise but if you're experiencing episodes of collapse & chest pain I would suggest you ring 999, or get yourself to A&E sooner rather than later

[holidaylamb in reply to Lezzers]

This related to my husband and being stubborn like a lot of men insists I am making a fuss He has had blackout for 4 years plus and the pacemaker does not help but this is new Think you are right and will just have to nag him to see someone

[Lezzers in reply to holidaylamb]

You have my sympathy, my husband passed out on a plane, onto the man in the seat next to him who then had to peel my husband off his shoulder. My husband refused to believe it'd happened! Just recently he was poorly but when I suggested calling the NHS helpline number he said no. I left it bout 15 mins then asked if he remembered what happened last time he was poorly, he immediately said ring them!! Yes they are stubborn & I really don't get it. Let us know how your husband gets on x

[holidaylamb in reply to Lezzers]

It is horrible seeing them collapsed on the ground and nothing you can do but wait until they come around I will persuade him to at least ring 111 about the bruising Maybe they can talk sense to him

[Lezzers in reply to holidaylamb]

I would certainly ring 999 without doubt next time he collapses