Lead Extraction & new Pacemaker

Since having my first pacemaker 10 years ago I have occasionally looked at your lovely supportive website & especially the last few months. In January I had a lead that wasn't capturing & had a new box change & a 3rd Lead. The box wasn't under the skin properly & I felt so ugly & because it wasn't in place I was getting all sorts of palpitations & feeling quite scared. In April I went in for a re-positioning of the box & was told there was an abscess under the site of a lead. My consultant continued to re-position the pacemaker & we thought all was good. A few weeks later it looked like the lead was on top of the box & was told I had an infection & was referred to St. Thomas' Hospital. I was so terrified when my new consultant told me about all the complications that could happen when there is a lead extraction, especially as I was a woman & my two old leads had been in for 10 years that I couldn't speak - just froze, even though the chances of something happening was 1 in 100.

Last week I had my lead extraction & a new pacemaker & leads put now in my right side & it's all good. I feel great! The thing was I got a book on positive thinking before an op. & read most of it so that I could thing of waking up after the op. & recovering. It was all in the mind. My consultant was terrific & I feel very positive now about myself & can hopefully start to feel feminine again.

So, I just wanted to say if you are feeling scared about this op., stay positive & all the very best to each & everyone of you for continued health with these wonderful little devices.

14 Comments

Minnesota....

by JeanWilson - 2013-08-15 02:08:28

When I was told I had an infection, I was put on a six week course of Rifampicin & Ciprofloxacin. I was sent to St. Thomas' for a PET scan which showed an infection under my lead. Last Thursday I had the lead extraction (3 leads in total) & box removed & yes my consultant did the new pacemaker & new leads on the right side afterwards. It was all down to the microbiologist to give the O.K. for the new set up to be implanted. My consultant said there was a little puss still under my lead. If there was a big infection I would have had to have waited a week with a temporary box, which I had first time round. If you have to wait a week, then you have to stay in hospital. I'm not sure what happened with the infection at the time of extraction, but was told I would get a phone call this week to tell me what microbiology found & if I would need to get antibiotics from my G.P. As yet, I have not heard but feeling great. As I said earlier, I was terrified, but when I had the phone call to tell me of my admission I read a book about staying positive leading up to an operation & that's just what I did.

It is so good to look at the old site wound & after eight months of feeling as though it will never go away, it has & I now have a brand new implant.

I know what you are going through & my thoughts are with you. All I can recommend is this...get the best consultant there is!

jean...

by lubro - 2013-08-15 05:08:51

It's always so nice to see and feel the positive energy from someone. Your approach to positive thinking will get you thru the fear that comes along with these procedures, or thru other situations in life in general. It's always so refreshing to have someone post about their fears and anxieties, but manage to remain positive throughout. I have experienced that 1% chance of having something go wrong, and it did. I was terrified as well. I got thru it, and still try to remain positive. But, now I look at it this way: What are the chances of me having another 1% episode? hmmm..
so nice to hear that you are now doing fine.
wishing you good health as well...
welcome...

Lubro

Hi Lubro

by JeanWilson - 2013-08-15 10:08:25

Thank you for your comment & I was so sorry to hear that you were one of the 1%, but as you say, you are O.K. now & remain positive. I was lucky this time to have the best surgeon & that helps too, but when I was initially told everything he would do I was terrified. I truly hope you remain fit, healthy & enjoy every day & be thankful for all the good things around you & support from others. Best wishes Lubro for the future.

Thanks Jean

by Minnesota - 2013-08-15 12:08:47

Your post was comforting as I too am battling an infection at PM site. I am just 8 weeks PO with first device. I'm on an antibiotic which has helped but very slow and outcome remains unsure. In the event I need removal and relocation it is reassuring to hear your story. I felt terrified as well when my doc explained possible need for removal then work on infection then new PM on right. I have a couple questions. Was your removal and new implant done same day? if not, how long were you without a PM and did you remain in hospital during that time? How did they treat your infection?
I'm trying to remain hopeful. Thanks for your positive outlook. I'm glad you are doing so well.

Update

by JeanWilson - 2013-08-16 06:08:51

I have just received a phone call from my consultant that microbiology did find a bug in my lead so I have now prescribed antibiotics. So, having the lead extraction was in my best interest.

Jean- another question

by Minnesota - 2013-08-16 11:08:31

Hi Jean. When you first suspected an infection, was it visibly noticeable- like at the suture site- red area, etc..? Or did you have fever and other symptoms? Did you have blood cultures and CBC? Did they show anything? My infection is visible at site- red bullseye with infection along suture line. It might be isolated to that area- a cellulitis I believe was the term my doc used. The size of red area has decreased but the suture line looks nasty- obvious infection. If I develop fever or site gets worse I am to have surgery ASAP. Til then we are treating and hoping it eventually succeeds. It's day to day. Thanks for your info it is very helpful. Take care.
Jennie (Minnesota).

Hi Jennie

by JeanWilson - 2013-08-17 05:08:30

When I had my box re-positioned in April, it was about 3 weeks later when it looked as though there were 2 hard wires on top of the pacemaker itself. The area was slightly red but I had no fever. For me it was just so uncomfortable and ugly. My consultant put me on a six week course of antibiotics & referred me to London. My blood cultures and CBC were clear. The PET scan showed there was a slight infection, hence the admission for lead extraction and re-sighting. The phone call I had yesterday was to confirm that there was a slight bug (pus) under one of my leads and I am now having antibiotics, but I feel great, although very very bruised. Have you had a PET scan Jennie?

I know what you are going through, how long have you had your implant?

Best wishes, Jean

Hi Jean. Thanks

by Minnesota - 2013-08-18 05:08:39

For all your info. I had my pm implanted June 11 for bradycardia. Perhaps 3 weeks later I too had discomfort and some slight reddening around site. Within just a couple days it bloomed into a full blown red bullseye around incision. A small dark looking spot was visible under my skin at armpit end of scar. I asked nurse if it was a suture under the skin and she thought it was. Within another day or 2 the dark spot crept along incision. During this time I had been to my doctor. He started the antibiotics. I was to call immediately if I developed fever, discharge or worsening site. I have none of those yet. But the infection across scar is stubborn. The red bullseye has reduced in size but infected scar is bad. It's closed- no discharge- but looks and feels bad. It makes the surrounding chest hurt. Painful to sleep. I return Tuesday to doctor. I asked him if we should have the infection department assess the wound. He said we could do that so I hope they have some options- maybe IV antibiotics as well as a topical. Like you my CBC and cultures are clean so they don't have any way to identify the bug. I have not had a PET scan yet- I have a lot of concerns about how long I can go on hoping for it to respond - at why point is it too risky. What if bacteria travel to heart? Etc. I will ask Tuesday. I will let you know what I find out. Thanks so much for staying in touch. It has really given me hope. Take care.

Hi Jennie

by JeanWilson - 2013-08-20 01:08:59

Well, there is definitely something wrong by the sounds of it, and so awful for your first implant. I too felt uncomfortable when I went to bed. It's still early days since your implant and I know that when I first had mine it was uncomfortable and felt as though it was falling to the side! Are you still taking the antibiotics as I was put on them for 6 weeks and then after the PET scan, if the infection was still showing then they would operate, which they did. How long are you on antibiotics for? I'm not sure if it's today you were seeing your Doctor. Is it your Doctor or consultant? I only dealt with my consultant and just had bloods done with Doctor. It's scary enough getting used to having a pacemaker - it took me a long long time to get used to having my first one. I'm so sorry you are going through this. Apart from the infection I really hope you feel well in yourself. Do please let me know how you get on. My thoughts are with you Jennie x

Thanks Jean- bad news

by Minnesota - 2013-08-20 07:08:50

I will have surgery Thursday. Remove pacemaker. Treat infection. Implant new device when cleared. My site started "leaking" this morning. Clear fluid tainted a bit yellow. Consultant said time to remove. Surgery Thursday morning. I will be without a device until cleared for new implant. I hope it isn't long. I'm scared Jean. Wish me luck. I will post soon.
Jennie

Suitcase vs Commando... ?

by Minnesota - 2013-08-21 01:08:44

Jean- I am enjoying my "last day" before the surgery tomorrow - Thursday - in the early morning. I took a long walk with my dog Sam. She's really going to miss me and I her. The consultant did not discuss the external pacer. I believe since I am not totally dependent they will have me "commando" or "without" so to speak. I am not looking forward to the time without the pacer. Very slow rate and pauses at night wake me up oxygen starved. I hope I don't have to go long without.
Yes it is good to get the device out and work on this infection. I think I will have local again yet I will ask for a little more "help" to take the edge off. I know I am going to start crying when they roll me down the hall. I did the first time also. I am an emotional cry baby... Uggggg. Can't help myself.
A heartfelt thanks to you my friend for your advice and support. I will post when I can.
Jennie

One last comment before tomorrow

by Minnesota - 2013-08-21 06:08:55

Jean- I will start a new post when I can post op. I think this thread will be deleted from the current page by then. I will mention your name in subject line. Or watch for my online name "Minnesota " to appear. 12 hours until we leave for hospital.
Thanks again for your support. Take care.
Jennie.

Thinking of you Jennie

by JeanWilson - 2013-08-21 12:08:18

Jennie, it's good that your consultant is going to treat you now. It must have been very scary to see that the site was leaking. They will remove your box and connect you to a temporary box I suspect and then you will have to stay in until the infection is clear. I had a temporary box while waiting for my very first pacemaker 10 years ago and It's a bit like walking round with a mini suitcase. It's best they clear the infection and as soon as microbiology are happy then you will have your new box. Will it be done under local anaesthetic? Don't worry, you'll be fine. I'm thinking of you and try and let me know how you are. I'm not sure about the time difference, but now it's 16.30 in the U.K. Good Luck for tomorrow Jennie x x

It's a new day!

by JeanWilson - 2013-08-22 03:08:16

Hi Jennie - you will now be in hospital, so will leave this message for when you can look at it. First of all, I am as soft about my pets as you and have been a cry baby too, so that's just fine. I am dependent (congenital heart block) so I'm not sure what they will do with you when they take you off your pacemaker. I also know what it's like to have a slow pulse and to wake up feeling as though you can't breathe in or breathe out - just scary, but you are in the best place and they will be monitoring you. You are not on your own and there is that red bell beside you to push if you are anxious.

At least they roll you down the hall, I've always had to walk into operating theatre and get on the bed myself - very easy to turn round and change my mind!

It will be good to get your infection drained Jennie and then they will have you sorted or soon.

I will look for your new message - thoughts are with you...

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