Pacemaker Check Feedback

Hi All

Thought I would feedback a couple of pieces of information from my device check last week in case it was of interest.

I have posted previously about my sensitivity to the acceleration and deceleration of the heart which normally occurs as part of the pacing checks.  After I explained that I had felt unwell during and after these tests last time, the EP told me that it was not necessary to conduct these tests until I was close to battery replacement or there had been a notable change in readings since my last appointment.  She was able to download all the information needed using the magnet without any disruption to the heart rate.  I thought this may be relevant to members who have similar sensitivity (in my case I think it is linked to my pacemaker dependency).

I queried what would happen towards the end of my battery life and how this would affect the functionality of the device.  The cardiologist who reviewed my results stated categorically that leaving a replacement surgery until the device battery was in its last few months of life and its level of function was affected would be a dangerous situation which should never be allowed to happen (I was thinking of you Piglet and the terrible position you have been left in as well as members from the US who are subject to insurance company protocols).  He advised that where there were indications that the battery was heading to this point, checks would be performed on a more frequent basis with a view to scheduling replacement surgery.  Surely this should be the case across the board for all pacemaker recipients.

There is no need to respond to this post as it is purely for info rather than asking a question.  I just want to make sure that if I learn something along the way I share it with the Group.

Best wishes to everyone

Rebecca x

 

4 Comments

Such relief !

by Gemita - 2024-03-04 15:56:50

Dear Rebecca, thank you so much for the feedback.  I am so glad that you don’t regularly need the intrinsic heart rate test, at least not until closer to replacement time or in the event of a sudden change in your condition and/or monitoring results.  That must be such a relief.

Your cardiologist sounds an extremely caring doctor and you seem well looked after.  It must have been reassuring to hear that he would never leave a device in place when reliable function could not be guaranteed.   My battery seems to be in the middle of its life, moving towards elective replacement time (MOL1 - Medtronic) which is rather surprising (but I am not complaining).  My device was placed in 2018 and I use the battery a lot at 70 bpm and with all the mode switches that occur with my arrhythmias … and now the Rate Response being turned on too.

Thank you so much for sharing your news and why wouldn’t we want to respond to our Rebecca?  xx

Thank you

by Lavender - 2024-03-04 21:10:47

I'm like you, Rebecca. My cardiologist already said last year that the pacemaker checks are not to include the intrinsic test of the leads because I am 100% dependent and very sensitive to the test. It's encouraging to know that when you need a new device there will be no unnecessary delay. 

Feedback

by piglet22 - 2024-03-05 06:02:58

SEENBETTERDAYS 

Thanks for posting.

Indeed, you seem to be well cared for.

What this nicely illustrates is the difference in "care" across the nation.

I've long thought that my health trust is poor and a recent report bears that out.

It used to be good but has got steadily worse over the period of nearly 19 years that I have been seen by cardiology. Right now, it's as bad as it can be.

I don't see anyone routinely, I upload data and don't get a response.

OK, I saw the consultant a week ago, but it was supposed to be a follow up and in my opinion, it's where you get tests results and some discussion of what they mean.

This was nothing to do with the current state of my pacemaker, but how I was responding to the change in Bisoprolol dose to calm the ectopics.

All the information I got was by asking and not by being told. It was almost as though the consultant hadn't read the notes or knew why I was there. The fact that he got my name wrong wasn't a good start.

Then comes the bombshell news that I was in the last 12 months of battery life. Having gone through one emergency replacement, I'm pretty jumpy and right now, it wouldn't surprise me if it's about to happen again.

I think they are experimenting with just how far they can go before someone has a serious outcome.

Like you, I don't like the tests in clinic and when I used to see them F2F, they introduced a policy of two staff being present and officially described the tests as challenging.

Of course if you don't see them it's not a problem.

So here I am, pretty certain that something will happen soon, no idea what they will do, a PM that isn't actively monitored.

Yes, we all know what pressures the NHS is under, another junior doctor strike just finished, but surely there comes a time where these peripheral service cutbacks have to stop.

I haven't got a clue what to expect from them, but at least I know they can and did do better.

Private Pacer Check

by SeenBetterDays - 2024-03-06 08:35:28

Thanks Gemita, Lavender and Piglet for your caring responses.  I just wanted to say Piglet that this was a private appointment as the NHS had put me onto remote monitoring like you and I felt uneasy at the lack of interaction so booked a private check for my own peace of mind.  I am really disturbed at the lack of proper care you are receiving.  Is it possible you could write to your GP and ask for clear advice as to the NHS protocols for patients nearing the end of their device battery life.  You could emphasise the distress caused by the previous emergency scenario and ask them for an absolute reassurance that you will not be placed in this position for a second time.  I think if you put something in writing expressing your concerns surely they would have to respond and liaise with your cardiac department.  I really feel your anxiety and frustration and wish there was more I could do to help.  I am lucky to have had the opportunity of a private appointment but know this will not be available to everyone. The situation you describe just does not seem acceptable and not something you should have to live with.  Let me know how you get on. Sending you all love and best wishes.

Rebecca x

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