Guest blog 2 – Paul Griffin, pacemaker goes into ‘safe’ mode for no apparent reason

Those who read my first article will recall that I am now on my sixth implantable device, four of which have been biventricular pacemakers. In bed at 2am is not the most usual time and place for something to go wrong but it did for me back in November last year.

Several years ago I had a lead fail which caused my phrenic nerve to activate my abdominal muscles in synchronisation with my heart beat. The resulting ‘twitch’ became quite severe to the point where it was continuous, even when standing. Consequently, I now have 4 leads in my chest, the three that are fully functional and a duff one! The whole idea of pacemaker leads is that they make good contact with the heart muscle and so, after a few months, the ends of the leads ‘bond’ with the muscle and, subsequently, are difficult to remove so it is simply medically more sensible to simply leave a duff one where it is. Obviously, they cannot do that too many times!

The ’twitching’ experience came in quite useful recently as my biventricular pacemaker went into ‘safe mode’ for no apparent reason. This caused the lead that passes close to my phrenic nerve to increase its signal strength four-fold causing ‘twitching’. The twitching was so severe that it caused the bed to ‘twitch’ as well! Because of my previous experience I knew the affect was not life threatening and so the next morning I attempted to contact my local pacing clinic. I was amazed to discover that their extension number was not held by the hospital main switchboard. The local Heart Failure Nursing centre did not have it either and I was advised to call an ambulance! That would mean adding the costs of doing so to an already underfunded local trust and tying up an ambulance and crew for no real emergency. As I was pondering this quandary, the telephone rang and it was the pacing clinic asking if I had a problem with one of my leads. My bedside monitor had highlighted the problem to them and I was advised to report to the clinic as soon as possible, which I did.

I was attended by the senior pacing clinician plus the pacemaker manufacturer’s representative who downloaded the data from the pacemaker to send to Berlin for analysis. My pacemaker was then rebooted. As a bonus, they were able to reduce the strength of the signal to one of my leads extending the battery life by around a year! Rather worrying at the time but everything has been fine since – 3 months. They’ve not been able to find a reason for the failure yet!

Apart from the above, when I had my first biventricular pacemaker fitted I was one of the lucky ones as I went from getting breathless digging up a weed or screwing in a woodscrew to virtually symptom free very quickly. I also increase my EF from 33% to 56% over a period of several years and my heart remodelled to an almost normal size. I had a relapse about 18 months ago but I’m pretty sure I have now recovered again. I had an echocardiogram on 19th February which should give useful data. Of course, I shall have to wait for my copy of my cardiologist’s report to compare with the previous results to see if there has actually been any change.

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