Update CRT-D leads

[Jaskei]

Me again sorry for the long post and I know you lot are probably fed up of me by now but I'm completely confused. My consultant has just phoned, apparently they had their meeting yesterday. He said all 3 leads have moved, however they have programmed around the movement which will keep it working as it should short term. I will need the leads, hopefully repositioning, if not then new leads. He said he hasn't had this happen to one of his operations for years and he apologises especially as he knows what a bad time I had. He can't do the operation next time as if the leads displace on the first operation you have to have another consultant do it next time . I have been put forward as an 'urgent' case and I will have my appointment through the post in the next 3 months as that is the current waiting list! He said in his opinion it would be worse for me to go back in immediately and have it done as the muscles are still fixing from last time and as they have managed to programme around it, it should still be safe. I have to take it easy and try not to use my left arm for the next few weeks to give the leads chance to stay placed. I don't get why the leads are now having extra to time to attach if they have to be moved, or replaced, none of this makes sense to me? Has anybody else experienced similar? I am so fed up at the moment.

[RufusScamp]

I understand your frustration. The NHS is under terrible strain. It sounds as if a delay is not so bad in your case. Look after yourself, and keep us posted!

[devonian186]

I have no experience of this but have you been given advice on diet, exercise or other lifestyle changes to ensure you are in optimum condition when you have it fixed?

[Jaskei in reply to devonian186]

No I haven't had any advice whatsoever and they are unsure why the leads have moved. I changed diet and lifestyle etc when I was first diagnosed.

[honeybubs]

hi Jaskei, so sorry you are going through this it must be terrible for you. I don’t know but with me having it done the same time as you I can only think that there is still a lot of healing to do inside and at the wound site and so perhaps it’s better for you to wait until it’s properly healed before they go in again. Thinking about you and no one is fed up of hearing about this we are all here for each other and I am especially interested in what happens to you so please keep posting and letting us know. Thinking about you, Joy x

[Jaskei in reply to honeybubs]

Thank you so much Joy x

[Dogloverxthree]

Hello sorry to read your post, I had cardiac arrest back in November and had pacemaker implanted (I’ve also had triple bypass) my surgeon had trouble and I was in theatre ages !!!my pacemaker has moved and I can now trace the wires with my fingers and they are visable also when I lift my arm up in the shower I can get my fingers underneath it,and sometimes it feels itchy under the skin!! I went back to pacing and they said come back if it gets worse and is bothering me but it’s working or it was when I saw them which was months ago, had a couple of AF admissions since then and they never mentioned it, hope you get sorted soon

[Jaskei in reply to Dogloverxthree]

Oh wow! That doesn't sound nice at all but I guess you are getting used to it. The alarm went off on mine so I had to go into pacing and the readings were not very good, I had a chest xray which showed the leads have all pulled back. They have managed to adjust the leads to read a little better but said it's only a temporary fix. I had a bad time when they originally fitted it just over 2 weeks ago which is why I am dreading going back in. Best wishes.

[Virkie]

Hi there,

It’s just same procedure but doesn’t take as long second time around and healing time is much faster without the same horrible discomfort. First time I had to wear a sling for a few days (told not to) and had to sleep on my back.

In theatre you’ll get the same IV pain relief. Remember to ask for the good stuff! Home same day. My original scar was healing up perfectly and then they had to do it again so it’s not quite so bonnie now but small price to pay.

Don’t spend a minute worrying about it and promise to treat yourself to something nice when it’s all over.

It’s all to give you the longest and best quality life and it’s amazing what they do.

Best wishes

Julie

[Jaskei in reply to Virkie]

Thanks for the info. I definitely need to ask for the good stuff as the last lot was pretty non existent. Looking back I maybe should have spoke up but I didn't.

I will just be glad when it's all done now, thought I had already got the worst of it over with.

Hopefully it won't be so bad second time round.

Best wishes to you

Julie

[BeKind28-]

Hello

I have not had to have this done but reading your post I can understand why you feel confused and fed up

Try and stay positive though with the thought they are going to sort this out even though the waiting is the worst I know but lets hope you get an appointment soon

Let us know how you get on x

[Jaskei in reply to BeKind28-]

Thank you x

[BeKind28- in reply to Jaskei]

x