Pacemaker

yikes

by Tracey_E - 2017-11-28 12:05:09

I can see why you feel like a guinea pig!!! What a rough time you've had. I'm so sorry. I know it's easier said than done in the UK, but can you go to another hospital, possibly a specialty heart hospital? Somewhere they've dealt with this before. Also try to get in with an infectious disease specialist. The cultures may be negative, but it sure sounds like infection. Good luck! 

Michelle

by IAN MC - 2017-11-28 13:47:11

I agree wih Tracey , maybe " Yikes " isn't a strong enough response !

I, too, am in the UK so what would I do ?    I have always found that your G.P. should be your first contact if all is not well even with hospital treatments. Never under-estimate your GP's level of influence !

Assuming that you are really disappointed with your treatments and resultant outcomes so far ,  I would tell your GP very forcibly about your experiences and your level of dissatisfaction.  I know the hospitals in the Midlands quite well and see that you live in Sutton Coldfield ( have you been treated at Good Hope Hospital by any chance ? )

I would ask your GP to refer you to one of the Birmingham teaching hospitals , for example Queen Elizabeth Hospital, which  is a cardiology centre of excellence. 

Stitches shouldn't just " come away " , a PM implant should be a relatively simple procedure, infection is always a possibility especially if you add to the complexity of the op by placing the PM under the chest muscle but your Drs seem unable to decide if it is an infection or not.

Maybe your implant was destined to be eventful but ,in your position, I really would do everything possible to try different doctors.

Best of luck 

Ian

You poor love

by Mapleshaz - 2017-11-28 13:50:06

You have been through the mill! I am assuming you are eating a healthy diet, all the right foods, vegetables, fruit, protein? Are you resting as much as you can?

I had my incision covered in theatre with a transparent plastic sheeting like a sticky thick Saran Wrap or cling film. Perhaps someone could give me the proper name for it. It is airtight, you can even shower with it. It stayed in place for eight days and the dissolvable stitches did their job. At any time I could check the condition of the wound without risking introducing more germs. Also, the evening before and the morning of the op, I washed the area with an antibacterial soap in the shower then rinsed really well.

I can’t see the reason to change sites. When the battery pack needs replacing every so many years, they use the same site.

Here’s hoping someone will have a definite answer for you and you can put this terrible time behind you.

Wishing you all the best for the future. ❤️

Pacemaker

by Shelly.97 - 2017-11-28 16:22:07

Thankyou all for your responses I really appreciate them.  Yeah Ian it was at good hope but apparently the surgeon that done the 1st 2 operations was the top pacemaker man he also works at QE.  And the second surgeon who opened it up to clean it was also apparently a top cardiologist surgeon.  I think I might go to the doctors as it looks such a mess after it’s been opened 3 times x

CIED Infections

by Hoosier Daddy - 2017-11-28 21:30:19

Greetings, Shelly, sorry for your misfortune.

Some things to consider: CIED infections are uncommon. ICD infection rates are higher than pacemaker infection rates; overall rates are typically published as being from 0.8 - 5.7%. Furthermore, not all fluid collections at the operative site are infections. There are things called seromas, or pockets of fluid, typically consisting of serum and dilute blood but not pus. During the first 30 days after implantation, "early post-implantation inflammation" can occur which can either be a non-infection or - yes, an INFECTION - but one that does not extend beyond the superficial aspect of the incision down into the pocket.

Next, we must distinguish POCKET INFECTIONS from DEVICE-RELATED INFECTIONS, meaning infections involving the deeper components, the leads. Not all pocket infections extend to the leads, and not all lead infections are the result of an infection which began in the pocket. Given the timing of your events, you almost certainly don't have a lead infection.

When you say your "results" have all come back negative, did they indeed perform blood cultures? Or have they just obtained swabs of the wound for analysis? When the blood cultures are negative, it is accepted practice EVEN in the instance of a proven pocket infection to treat you with a 10-14 day course of antibiotics. But when a device is new, it is not routine to get blood cultures (in the US, three sets) because of the very low likelihood of a deep (device, or lead) infection so early on (if you did have a significant lead infection, you'd be "septic", or quite acutely ill). 

When your doc talked about explantation and reimplantation on the other side, he was likely voicing the possibilities. Let me emphasize with you the PROBABILITIES. You likely have inflammation, a seroma, an incision infection, a stitch abscess and/or minor wound dehiscence, or at worst a pocket infection. Granted, these complications are not fun, but one has to keep everything in perspective.

For what it's worth, as one whose device is just 3 months old myself, we ALL have to contend with possible lead ("device", or deep) infections even more than a year after implant. Whenever we brush our teeth, and even to some extent when we eat some crunchy foods, studies demonstrate that we transfer ("seed") some of the bacteria on our gums through the periodontal circulation into our general circulation (bloodstream). It is NOT currently recommended that we receive pre-tooth cleaning antibiotic prophylaxis. However, there ARE people who develop late lead infections with NO involvment of the generator/pocket, some of whom have dental seeding and some of whom have no identifiable source, but these come about from a blood borne source of bacteria. For this reason, you are not alone! We all risk a serious infection of our devices, but we live with the certainty of the tremendous benefits they give us, too! 

What an ordeal for you!

by Zoë - 2017-11-29 17:05:24

Hi Michelle,

I'm new here too and am finding this forum a huge sense of comfort and I hope you do too.

I can relate to you feeling that nothing seems to be going right for you lately but hopefully with time, and one final procedure, you can look forward to a speedy recovery.