Needing some info if anyone can help

Hello!

I'm still relatively new to this whole pacemaker business but could do with some advice if anyone can help me. To give you the best understanding I'm going to give you the full story!
I had my first pacemaker fitted in september after doctors discovered I was collapsing due to my heart stopping - cardio-inhibitory vasovagal syndrome is what they called it! All was going fine untill beg of Nov, at that point I started to see one of the edges of box slightly. Rang the hospital and they checked it, said it was all fine just the final bits of swelling had gone down and as I'm young (Only 22) and thin it was going to be slightly visible. I was fine with that and carried on with life. However by beginning of Dec, I had a lot of pain in the area and the edge was becoming very prominent. Back to the hospital again, this time a few concerned looks. In this time my skin had also become very itchy particularly round the site. I therefore asked the pacing nurse if I could be allergic to it, Was told definitely no way, they have been putting them in people for 45 years and no ones been allergic! My consultant then has a look confirms what the nurse said but sends me to a dermatologist anyway. To cut a long story short, skin tests came back and I'm allergic to the pacemaker, so my body was rejecting it!
So feb this year brought surgery number two, new box implanted and original wires left. All goes well until beginning of april. I noticed a small black dot on the side of my scar, over the week it got a bit bigger then burst. Some gunk came out and I took myself to a&e on the advice of my gp. They decided I had a stitch abscess, put me on oral antibiotics, said it would heal up and I went home for follow up in a week. 3 weeks & 3 follow up's later it hadn't, didn't get any bigger just wouldn't heal. As such my consultant decided he would do a site revision. Went from clinic to surgery in 20min (my consultant, once deciding he is doing something does it!) re-opened the scar, took some skin out and re closed it. I was home by late afternoon.
After that it went great again for 2 weeks, pain was there but thats standard. Then after two weeks the scar opened again and brought with it some more gunk. Originally consultant thought it was another abcess and would heal. However after two weeks decided it was a superficial infection so put me on oral anti-biotics and said it would heal. It still hasn't however and now they are considering it is a worse infection in the sight and they may need to operate to take the pacemaker out. I'm on my last couple of days of oral anti-biotics and then they are going to review my case on tuesday.

So theres the story, I have a couple of questions:
How can I have an infection, one which all the doctors seem a bit panicky about, when other than a slight temp that comes and goes and a site that is open and weeping I feel absolutely fine??
How is taking the pacemaker out going to help the situation? Will that get rid of the infection?
Do they put a new pacemaker in as they take the old one out, if not what happens in the meantime?
How did I get an infection when the site was closed for two months??

Sorry if they are really stupid questions, I thought you guys might be the best people to ask!

5 Comments

pm site

by Alma Annie - 2012-05-23 06:05:58

I'm so sorry that you have had to go through all this. Something does not seem right.
I wonder if you could suggest that they place the pm in an entirely different site, to allow your wound to heal. From what I can understand there are many sites in which to place a pm. Sometimes the Dr. need a suggestion.
Let us know what happens.
Alma Annie

infection

by Tracey_E - 2012-05-23 09:05:16

You can most definiely have an infection and feel fine, the fever is your first clue. It's not common but it's possible to have a pm for years then it become infected, so yes two months isn't hard to believe. They should have cultured the wound months ago when it wasn't healing. If they haven't done that, I would insist on it now. A culture can tell you if it's a strain that will be resistant to what you are on so you can be more aggressive.

Have they discussed iv antibiotics? That's usually the next step if oral doesn't respond. And I wouldn't wait another week. If you still have the fever tomorrow, call. This isn't the time to be laid back, you need to be aggressive if you are going to avoid removing the pm. Have you been referred to an infectious disease specialist? They are the best to treat this, not your cardiologist or dermatologist.

If an infection doesn't respond to antibiotics, it is common to take it out because you can't risk the infection spreading. To be blunt, people die from infections that spread out of control. I believe they generally wait until all signs of infection are gone before giving you a new one rather than do it right away because infection can latch on to a foreign body (pacemaker). So very sorry you are dealing with this!

Infections

by cohara - 2012-05-23 09:05:41

Infections of a PM can be serious if not treated properly. The pacemaker is connected to your bloodstream, so doctors will naturally opt to be cautious if they think the PM site might be infected. There are several ways they can address this. For some people who are not pacemaker dependent, if they think the site needs time to be infection free, they might remove the pacemaker for a while until all signs of infection are gone. The also have antibacterial mesh to help with infection. The worse that would happen is they give you a nice, clean, bacteria free new system. If the site seems to be compromised, they may select another site for the PM. Your doctor seems to be the type to stay on top of things, so I am sure he knows exactly what he is doing. The good news is that if they do need to remove and replace the system, your leads have been in less than a year, so they have not built up all the scar tissue that leads have after a few years in place and are much easier to remove.

The most common infection is a type of staph infection. They are fairly common but having them go to the PM site is thankfully not as common. It happens more often with a new implant, but it can happen to PMs that have been in place for much longer.

I hope it does turn out to be something simple. However, if it is an infection, you caught it before it spread so that is a good thing.

Good luck. Let us know how it turns out.

Carol

Infection

by bjbumblebee - 2012-05-23 10:05:04

I had an staph infection on the pm site. The wound was healed but then it started getting red and then a lump appeared that kept getting bigger. FINALLY I decided check with my regular doc who gave me antibiotics but was smart enough to also call my cardiologist. I was taken to the hospital right away and into surgery where they opened up the site to find it full of puss. They cleaned it up best they could and then I spend 2 weeks in the hospital with the wound site opened and packed with gauze and antibiotics, needle pricks in my fingers every day. The docs were freaked out. I'm 100% depended on my pm so they couldn't take it out. I was given antibiotics through IV which were so strong they burned my arms. Fortunately all the efforts were a success. But I had not idea that this infection was taking place at the time, I felt fine. It was quite a surprise. I hope the docs get you taken care of!

Bonnie

Insist that they culture it

by kat97 - 2012-05-24 08:05:05

If they havent cultured it insist they do NOW!! Do not take no for an answer. I complained for six weeks to my surgeon before I ended up in hospital. It was MRSA. I have a loop monitor not pm yet. Good luck! GET IT CULTURED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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