Pacemaker - Infection

[Dogglebird]

I had a pacemaker fitted 7 weeks ago. The site began to become inflamed a week ago - red and swollen - and I attended the hospital this morning. The cardiologist said the site of the implant had moderate to severe infection. She prescribed a high dose of antibiotics and told me to return to the hospital in five days. What can I expect whet I return to the hospital? Cardio mentioned the possibility of having to remove the pacemaker - how likely is that? Would removal involve anaesthesia and/or a hospital stay?

[Chinkoflight]

I have an ICD fitted, which is similar. It failed on day one and was switched off. My problem was a detached lead. Infection control is very important so it's essential you follow all advice you have been given until you go in for further checks. I went back in in three weeks for a lead revision. It's routine of course to replace units at the end of battery life they are made to separate from the leads taken out and a new box put in and joined up to the existing leads. It's a little longer procedure than the initial fit, but all very similar, done under local with the offer of sedatives. All the risks are the same as the initial procedure but with a raised risk for infection. There are additional things they can use to reduce infection risk. My box was put back into an infection control pouch. I was advised I may have to stay in overnight as they have to do all the usual check procedures. The later the list in the day may mean you stay in. But although later than planned I still managed to go home the same day. Hopefully for you, the infection will be controlled and there is no need for a procedure.

[Dogglebird in reply to Chinkoflight]

Thanks for your reply. From what I have been reading over the past few hours, it looks likely they will remove the whole set up under a general anaesthetic and have to start again on the opposite side. They will have to assume the device has been infected and it is dangerous to leave it in situ. That requires surgery under a general anaesthetic, fitting a temporary pacemaker and, after a suitable period of anything from 3 to 13 days, implanting a new device on the opposite side. A bit grim.

[Chinkoflight in reply to Dogglebird]

When my ICD played up I asked for any experience on this site. But you (and I at the time) are in the low end of the 'there is a small risk' so there aren't many people about in the same boat! There is a newer type of ICD where the leads sit outside of the heart, it's generally fitted to younger people with VT risks. This reduces some of those grim possibilities you've read about and I read too. One cardiologist wanted to fit one to me but that is a general anaesthetic procedure. From memory though it doesn't provide the same pacing function that some cardiologists thought I needed. I tried hard to have that device fitted but its more costly and would have required me to go to a different hospital.

The grim bit you've read about is infection travelling down the leads. This was the big concern for me.

It's good we can look up stuff on the internet, but it can cause worry.

I sense you have 'broad shoulders' but nevertheless everything starts to spin with timeframes and urgency.

I was also concerned how my issues happened, I guess I was playing 'the blame game'. But I was concerned the cardiologist who fitted the device was marking their own homework.

So the revision procedure was carried out by the head honcho which I did find reassuring. I was blunt in my discussion with the hospital while at the same time knowing I was completely in their hands and dependent on them.

I do feel for you. You can't help but think the worst. In my case they undertook the riskier procedure to remove the offending lead rather than leave it in situ which I'd read about but hadn't expected to happen. So 4 months on everything is working as it should have done from the start.

I was acutely aware on the day that the whole team were well briefed and up to speed on the 'this is not a routine procedure - A game'.

You have to trust them completely in these circumstances would be my takeaway.

[Dogglebird in reply to Chinkoflight]

You are 100% right - we should be careful about what we read on the Internet. I am quite scientific and familiar with much medical terminology, so I tend to refer to published papers on the subject from scientific publications. They tend to vary a bit depending on the country where their research has been undertaken and the relevant protocols and guidelines they follow. In the US and most of Europe any infection results in removing the CIED and leads because they can't guarantee the infection hasn't become embedded. My main concerns are first a hospital stay - something I have never experienced, and second having to endure a second implantation, which was brutal and excruciating the last time, followed by six weeks of being next to useless. I do trust them, though, as this is their day job.

Glad you have come our of the other side and are now sorted!

[Lezzers]

This happened to my friends husband. He had the existing device removed but they left the leads in situ. They generally leave the leads in situ as it's quite complicated/involved to remove them & can be a bit risky as they're buried in the heart, though as yours is a relatively new device it might be a bit easier. After they removed the device they cleaned out the infection area (my friend calls it bleaching 🤷‍♀️) & he was given antibiotics. After a few days/week (if I remember rightly) they fitted a new device & new leads under the right shoulder. That was a few years ago now & he's never had any further problems. He was kept in hospital for a week or 2 but that was because he had other issues going on.

It's not common but it's also not unusual to get an infection at the device site, it doesn't always mean removal most people are able to get away with antibiotics depending on how severe the infection is, my friends husband had a really severe infection.

If you're on Facebook that a really informative group called ICD support-uk that I highly recommend, I'm sure you'll find other members in the group who've had similar problems. Good luck

facebook.com/groups/7879967...

[Dogglebird in reply to Lezzers]

Thanks for your reply. From what I have read, it seems to vary from country-to-country. In the US, any infection means the whole lot is extracted under general anaesthesia because they believe the device and leads are likely contaminated and reinfection is then inevitable - and with serious risks. I'm not certain what they do in the UK now - this is always changing as new research is published and protocols reflect that. The leads aspect should be easy just seven weeks after implanting them - they could probably just pull them out if they wanted to as they won't be established in scar tissue. I wasn't aware of the ICD support-uk group, but I have now signed up, so thanks for the link!

[Lezzers in reply to Dogglebird]

Yes, I would think each country would have it's own protocol, though I believe the UK still prefer to leave redundant leads in situ rather than risk puncturing the heart trying to take them out, though I know some people have had the leads removed but it's not usual. Also do bear in mind that although your leads are recently fitted they will still have embedded to some extent, after the implantation of an ICD they do ask you not to lift yours arms, carry heavy stuff etc for 6 weeks after the procedure to enable the leads to bed in. My understanding of the leads were they are made of a material (titanium?) that doesn't cause infections which is why they're left untouched, I would be really interested in what you cardiologist/EP says about this if you don't mind updating us after your next appt? I'm also led to believe that the downside of leaving redundant leads in situ is that, even if your ICD is MRI compatible, the redundant leads are incompatible. Again I would be interested in knowing if that's true?

Glad you found the support group, it really is a friendly, helpful and supportive group.

[Dogglebird in reply to Lezzers]

I will update you once I know what their plans are. Thanks for your input.