IV-ICD intravenous implanted cardioverter defibrillator , in my case two lead with a pacing functionLead failure - a generic term used to describe any sort of lead related problem, broken, loose, cracked etc
HTFAGE *
Hi this is another missive from me. Hopefully there are some grains of usefulness. I have previously sought advice and received great support for my ICD implant problems. Background: implanted 12/3/24 , started causing debilitating problems from first evening, support calls to hospital team were negative, get used to it, and finally a call back from the hospital 2 weeks later to say the device was failing, as if I didn't know, and the pacing lead was temporarily effectively switched off the same morning.
The outcome yesterday was a "lead revision" procedure. In addition to the information from the pacing technician wireless based device monitoring,a second set of X rays were used to look at lead position to compare with the X ray images taken just after the device implant.
This showed the pacing and sensing thinner lead position in the right atrium was detached and 'floating' around. This meant it was subject to change as my posture changed and was the cause of the erroneous charging/pacing activity I had experienced.
So much better this time round, I was talked through the procedure, the options, risks etc and was 'allowed' to ask questions. In truth the options are limited, the main decision being around whether to try and reposition the lead, leave the failing lead in situ which is viewed a low risk solution or to remove it first and replace with a new lead. The relative risks were not given, the consultant wanted all options available, but he was pre-occupied with the considerably increased infection risk in this procedure, 8x the risk!
I had read up about lead revision and there are worrying risks in some literature around lead removal, suggesting this should only be done in larger heart centres that had OHS facility. Indeed a previous responder kindly shared their troublesome experience of a problem removing a lead. This was in the back of my mind.
I asked a question about this and was advised, 1 there were unspecified reasons why removal was likely a good idea, 2 as the leads were only recently implanted it would be easy to remove, 3 it meant the existing Venous hole could be used for the replacement.
I had already made my mind up, in spite of some concerns about this centre and having reviewed options with my GP around second opinion and centre change, that I should accept all the risks, and to 'give myself over' to the Consultant. I wanted to be able to manage my anxiety in the run up to the day and on the day. To help I actually wrote a review of all the issues I had had with the hospital team, all the unanswered questions. Quite a lengthy piece. This worked in that by writing it down I knew it was always going to be too difficult to address given the pressure NHS services are under which no doubt contributed to my issues and care. Should my care outcomes badly fail on this second attempt my family will have a very good paper to put to an inquest!
The lead revision felt more brutal overall than the initial implant.
For cosmetic and I suspect access reasons, the consultant proposed to make a longer cut encircling the scar to remove it and leave me with just one scar on completion. Infection was a big concern from the outset, and as he talked me through removal of the device to access the leads, he said he would make space to insert a special anti infection pocket for the device to sit in. He removed the old lead before inserting a new lead. Replacing the device in 'the pocket' was a very physical affair and in spite of a lot of local anaesthetic, still painful. This was because the combined bulk, removal of the scar requiring pulling together of the wound made for a tight fit.
Thereafter the remainder of the procedure, recovery, pacing checks, x ray was fairly standard to discharge.
However, for those following my journey, you may remember much of my anxiety was around the need for a pacing function associated with my SR Bradycardia, bisoprolol impact, and whether all I needed was protection against a fatal LVT.
I had lived for the past four weeks without the pacing lead working and the rationale for it to me seemed lost, especially pacing at 60bpm at rest.
So I was surprised when the consultant said the new lead would be set at 35bpm , meaning it was effectively switched off, when he had initially persuaded me why it was essential to have the pacing function device.
Although I still believe I would have been better served by having an s-ICD , as was an early plan by a consultant, the fact that my heart is being allowed to function for the most part in its natural flawed state 99.99r (!) % of the time is okay. Here's hoping the infection control has been managed.
I hope this is a helpful and not too lengthy read, I never could do precis. (Sorry)
I still believe, more work needs to be done regarding outcomes for use of non- heart invasive devices for combatting LVT. My guess is the issue of time and facility for implanting s-ICDs for example is an economic cost. But I note that a centre I am very familiar with has just started the first implants of leadless pacing devices for Bradycardia ((Medtronic) via the femoral artery in England! Avoiding invasive trans-venous leads is the way to go, but may be some way off before this is the norm.
Oh not forgetting
* Hard To Find A Good Electrician 😬. ( All my jokes are inevitably in bad taste I'm told)
Apparently there are some good thunderstorms around later today to observe from a cage! Are there any research papers on the risk of being outside in a storm with an ICD or Pacemaker! ?
#chinkoflight