The EP pacing technicians had picked up a lead problem on the atrial pacing lead 4 weeks ago and three weeks after the device was implanted.
On Wednesday 1 May I went in to have the problem investigated and a remedy effected. This procedure was entitled a lead revision.
The delay was because I asked for the procedure to be done by the alternative consultant in our hospital.
On the day he was very concerned to manage infection risks and was stressing in the signing of the consent form that they were significantly increased and put a metric of 8x more than the same procedure done for the first time. He suggested that lead re-positioning would be the likely procedure but also talked if replacing both leads, a single lead, and lead removal of the failing lead.
The outcome was lead removal and replacement, removal of the original scar to create a new single scar pocket, meaning slightly stretched skin to close the pocket, and a tighter fit for the unit as he had used a special antiseptic pocket to sit the box in, again meaning a tighter fit. To be clear I was very aware of this as the whole procedure was a more robust experience than first time round.
I was drenched in antiseptic cleaning solution, to the point of feeling nauseous.
Today I decided to look up infection control and risks and the above paper link looks fairly representative and comprehensive. It talks about lack of awareness amongst professionals with the exponential increase in device fitting.
Interestingly I spotted some actions clearly implicated in the consultants concerns and a few missed too which I'll highlight. I'll put a cross when this wasn't done for me!
Drenching in antiseptic is helpful
Shaving of hairs should be done with an electronic razor with disposable head not blade shaving ❌
Anticoagulants should be continued upto procedure date where the patient has a previous stroke record❌
A new antiseptic pocket can be used although too little outcome data as yet
Where a failed lead has recently been fitted then removing it rather than leaving in situ improves outcomes
A delay of several weeks before lead revision takes place when failure has occurred in a new device should be preferred
Advising to not replace bandages or expose the wound area for a month after procedure if possible. ❌ I'm not sure how this sits with stitch removal at 10 days. But I will leave the bandage on until stitch date and use the spare bandage immediately and explain this need for hygiene still.
There are a whole host of catheter lab hygiene and antibiotics recommendations too which I can't comment on, except to say my observation was of staff coming in and out of the lab between patients without re-gowning etc. So I think this was potentially a weak area.
I'm recovering and on an amusing note, I now have one pert man boob and one looking a tad droopy! They obviously cut away a fair amount of flesh around the original scar that needed pulling together!!! Made my wife laugh. And now I can say ' inappropriate gaze' 🤣
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Chinkoflight
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Sentences I don't say very often - I wish I could see your boobs - deary me!! Glad you can have a laugh about it all and I'm glad you are out the other side.... here's to a speedy recovery and a good outcome.
I would really like you help if you don't mind. My husband had a dual lead ICD implanted in February this year and it straight away caused/triggered afib and flutter and debilitating symptoms which we are still trying to get help with from the hospital (also UK so NHS).
I've from the start wondered if it might be a lead problem.
Did you notice any symptoms from your lead issue? Do you know how the EP pacing technician picked up on the issue? Was it from the pacing data?
Thank you so much for you help and great list above for infection control, concerning some was not obeyed, Eva
Hi Eva, I'm sorry to hear about your husband. If like me your husband was discharged soon after the implant. It's a big thing and while most people who don't understand think you should be delighted you've been treated, it's actually a lot to get your head round. There is the discomfort of the procedure, the awareness of something foreign in you, and as it sounds, you don't feel miraculously better. Quite the opposite, almost immediately I was home I felt rough. I went to bed, being super-cautious not to move my left side and lay flat on my back. Soon after I was getting thumped, it made the bed move! I turned onto my right side and it thankfully stopped. I did sleep but again in the morning on my back I was getting single thumps quite frequently.On getting up I noticed short runs 3-10 taps on the left side of my heart area. Not discomforting but worrying. My Afib before the device was infrequent, and the left ventricular tachycardia had been a single event. So suddenly I was being paced and cardioverted with the device for previously un monitored symptoms.
Like you, I asked here whether this was normal and BobD replied suggesting no. It took two days to get the hospital to respond to my queries and they said they couldn't see anything on their monitor, but it didn't seem a very confident response. I suffered for three weeks. I had shortness of breath, feeling of doom symptoms, and terrible postural hypotension. I was convinced a lead or botheads were loose. It definitely was posture related. Sitting in some positions definitely increased the pacing twitches.
Then out of the blue I received a call asking me in to the hospital because a fault had been received. I think this coincided with me relocating the bedside minitoring box and pressing the set up button which would have triggered a report.
So do you have a monitoring box, and have you pressed the linking button, a heart button on my Latitude box? Do this when symptoms are worse. Then phone the hospital EP team to look at your report because you are feeling awful.
After I was called in, an offending lead, the pacing atrial lead was switched off and I more or less returned back to normal! The really difficult to deal with thumps disappeared, but the ATP pacing continues in random fashion. I also still had moments of breathlessness and feeling a tight chest.
Again, it was impossible to get a response from the hospital. So I decided to walk in first thing in the morning and ask to see a pacing technician or Doctor. I was briefly seen ,but not connected to a monitor, told it was safe and I would have to wait until my lead revision appointment. I walked out of there and straight into A&E and presented with my symptoms of breathlessness and tight chest that had woken me in the night. I knew I would have to sit it out for a long wait and go through the usual cannula, bloods etc. By going in to A&E with known heart issues you have to see a cardiologist. There is a duty cardiologist available to them so no need to feel guilty. Eventually a cardiologist who I knew, not an EP, saw me said there was some issue with bloods and I should have an x ray to see whether the lead had actually detached. This could be compared to the X ray you had after the device was fitted. He reassured me and fully explained how the ICD was impacting me and re- assured me in my case that the defibrillator lead was okay and the limited functioning of the pacing lead wouldn't hurt me. He didn't reassure me about the extent to which the lead was free inside my heart and potentially causing damage but I did feel better about this. It had raised my case in the cardiology unit to a higher level so I felt reassured enough to go home.
It's drastic but at times I felt so low that I did hear myself saying I can't live like this, it was so awful. The good news is since the lead revision on Wednesday, apart from the procedure discomfort and after effects of antibiotics, sedatives etc I feel NORMAL again. Fingers crossed healing is okay and hopefully the EP tied double knots!!!
I don't know if this will help you, I hope so. If you haven't pressed the button on your bedside monitor do so, every time you feel something's not right. They will get the reports and the message!
Good luck and feel free to message me directly and let me know how you're getting on.
My gosh Chinkoflight I thought I'd better go back and read your previous posts.... you certainly have been through it and then some. Quite a year!!
I am so pleased to hear the lead revision has had a great impact and you are finally recovering well.
And I appreciate you for sharing all your detailed symptoms and treatments it is very helpful and has given me more impetus to ask the hospital again for a lead assessment.
I've found many medical case studies around lead issues/faults and the difficulty in diagnose them, it comforting to hear from you that yes it does actually happen "to normal people" even if the official statistics is a very low percentage.
As a complete aside you have also highlighted that my daily HealthUnlocked email doesn't really do the trick as the last post I saw from you was the "would you drive or cook" which I remember as it made me giggle. All the others I had missed, I will start going in manually now and scroll through.
Right, on I go to update my husbands "current state" document and email the hospital again, fingers crossed.
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