Infection? 6 months post new lead and box change

I am 42 and had my first (dual chamber) pacemaker at 19 due to complete congenital heart block. Six months ago I had my latest battery change (lost count how many!) but also had to have one new lead fitted as the other was essentially broken! This last procedure was not without complications but I had seemingly fully recovered.
A few weeks ago I noticed I had a few sharp pains periodically around the pacemaker incision site when I moved or laid a certain way. It is a little itchy and best I can describe it as is 'increasingly uncomfortable'. Today I noticed a swelling that resembles a large boil (about 1cm x 1cm) at the top of the incision site. I have two elderly parents who rely on me totally to take them to their respective cancer treatment appointments which are coming thick and fast, I have two children aged 1 and 3 and work full time. I am really hoping it isn't an infection which will necessitate another operation which will keep me out of action in terms of caring for my family but can it be anything else?


See the doctor

by Lavender - 2022-12-28 18:32:51

Don't fool around.  See a dr. Asap.  It might not mean surgery might need on antibiotics though. You won't be any help to your family if you don't first take care of yourself. 

Go get cultures asap

by Tracey_E - 2022-12-29 09:49:41

Don't let them just send you home with antibiotics, you need to be sure you are on the correct antibiotics immediately. Don't panic, but don't mess around and stand up for yourself if you need to to be sure it is treated aggressively and quickly. 

And Lara,

by Lavender - 2022-12-29 11:13:35

Please get back to us and let us know what you discover about this problem from the docs. 
May God send you a spirit of calming peace and richly bless you as you so richly bless others 💗

Thank you

by Lara - 2022-12-29 19:56:24

Thank you to everyone who has taken the time to reply and share their advice. I called the pacing team at the hospital this morning but when they called back they advised me to seek advice from the GP. I rang the GP surgery and, to be fair, the GP rang back fairly promptly this afternoon and asked me to send over a photo of the problem area, which I did. Not wholly convinced you can tell much from the photo but she is an expert and I am not! She advised that she would review the photo and then either write a prescription for antibiotics for me to pick up as she thought an infection might be likely based on what I told her or ask me to come in to be reviewed. Haven't heard back today so maybe tomorrow...

In person

by Lavender - 2022-12-29 20:21:30

I'm not aware how things work in the UK. Here, we would see the specialist who did the surgery for a recheck in person. Also, they would do a culture on the area to see what antibiotics would fight the specific bacteria causing the infection. 
Call again tomorrow and don't let it get pushed out another day with no answers. 

"she thought an infection might be likely based on what I told her" is particularly concerning in that she didn't act more quickly on this. 


by Tracey_E - 2022-12-29 21:41:20

Push hard for a culture. Here's the risk- if the infection spreads too much it can get on the leads which go straight to the heart. If that happens, everything is coming out and you are in the hospital on a drip then getting a new system after you heal. Most GP's have no idea how high the stakes are. If you take the wrong antibiotic for a week, that's a week the infection is growing and increasing that risk. Cultures get you on the right meds faster. You might want to consider the emergency room given it's a holiday weekend. 

Yes I would go through A&E to be safe and to get some checks

by Gemita - 2022-12-30 07:33:53

Lara, your comments sound about right for our failing NHS service at the moment.  My experience too is that GPs usually prefer to assess the urgency of a skin lesion by photographic evidence first.  Then if the diagnosis is uncertain or worrisome, they will triage us and give us an appointment to see them in the GP surgery at the earliest opportunity.

However, as you will read from members here, if it is an infection, the potential for it to spread - device-leads-heart - is real and cannot be ignored.  The best way to get a diagnosis is to attend A&E (groan I know) or an Urgent Care department in your local hospital, since the GP cannot arrange all the necessary checks and get the results back this side of a holiday weekend, whereas A&E/Urgent Care can and won’t (or shouldn’t) discharge you without firm answers.

In light of what members are telling you, you may need to be firm about the potential urgency in getting a diagnosis to rule in or out any infection and to identify the particular infection, if present, so that an appropriate antibiotic can be prescribed without delay.  

Thank you!

by Lara - 2022-12-31 19:59:59

Thank you again for all your comments, I really appreciate the advice. The GP contacted me yesterday morning and said it wasn't clear from the photo of it was just inflammation or if there could be an infection brewing. She asked me to go in at 6pm last night which I did. As soon as she saw it, she said it was much clearer that it was an infection having seen it in person than on the photo and she prescribed antibiotics. She also made comments which echoed those you guys have made which is to not mess around over the weekend - if I developed a temperature, felt unwell, or things didn't improve then I should go straight to A & E. I asked about cultures and she said that is what would probably be done at A & E next if there was no improvement. 30 hours on and I think it is slightly less red and itchy so I am hopeful the antibiotics are working...
As an aside, it is really interesting that people in other countries have such easy access to cardiologists. I have NEVER met my named cardiologist and since my first pacemaker implant 24 years ago the only time I have ever seen or spoke to a cardiologist is on the operating table when I am having a box change!! And it has been a different one each time!! When I was pregnant four and two years ago, I was deemed high risk because of my age and heart condition so the specialist ordered an echo each time. The second time, it appeared there had been a deterioration in the ventricular function/ ejection fraction and some issue with a couple of the valves. They asked my Gp to refer to the cardiologist for another echo (when I wasn't pregnant) to check things out. The referral was 18 months ago and still waiting!!! I guess this too illustrates the current state of the NHS system ☹️

Anyway, fingers crossed the antibiotics do the trick. Happy New a year to you all.....xx

Be safe be well

by Lavender - 2022-12-31 21:21:50

Thank you very much for reporting in. It sounds like you're on the road to mending. Please do keep close watch on your symptoms. 

I have had the same cardiologist all along. She's not a warm personality but she's always been there. I see her every six months, can see her or her staff quickly if need be. 

Well you folks are already into 2023, and we here in the USA will be ringing in the new year in a few more hours. A blessed healthy happy new year to all! 

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