'Your Pacemaker is Working Normally'

Thanks Penguin

by piglet22 - 2023-11-09 07:26:31

I have theory that might be just my health trust or my hospital, but I get the impression that there might be a regime in place that in some industries goes under the name of "don't put your head above the parapets", "don't rock the boat", "don't report bad news to managers".

My impression is that the technicians, the ones who do the PM interrogations, do as much as they are asked to do and if asked, are very guarded about what they say.

Hence the "PM is fine"

That will do for most patients, but if you get the suspicions that you aren't being told the whole truth, then you can become less than confident about what you are being told.

The rot set in during the face to face sessions which had always been friendly and local.

Then for some reason, it was decided that even in a hospital setting, routine downloads were "challenging".

This led to two technicians being present, one doing the tests, and the other looking out the window.

I think this led to a breakdown in the testing atmosphere and possibly a degree of resentment.

The local clinics were closed then the regional ones as well.

This broke the engagement of technicians and patients. Technicians didn't get a day out to meet the patients and vice versa and now they get to sit in some basement room making phone calls.

I've worked in industries where people just did what was on the worksheet with deliberate policies of not reporting problems upwards. This led to managers and directors thinking all was well when it wasn't. God help anyone who did otherwise.

It doesn't help when a divide exists between consultants and technical staff. Possibly consultants having several other day jobs in the private sector can be divisive as well.

Just meant for us!

by Gemita - 2023-11-09 08:24:15

I think I will find a place in the FAQs for “What to ask my doctor when he tells me my pacemaker is working normally, but I don’t feel normal”?  It will be an enormous help if we can produce a brief paper to help members with the kind of information contained in the link and a check list of other possible causes, including meds, electrolytes and specific health conditions that can cause pacing abnormalities.

We are really beginning to challenge ourselves, each other and our doctors and it can only get better and help us to get answers/a more comfortable pacing experience, so thank you Penguin.  The link was a precious find and a great idea for a post.

A bit technical

by Gramzo - 2023-11-09 09:53:52

Yes - the article is beyond me at the moment.  I will tackle it again when my brain relaxes.  I'm glad we have knowledgable people like Gemita to explain things to newbies like me!  I'm feeling really uninformed right now by my EP's office.  As someone who knows the ins and outs of a mechanical heart valve and anticoagulation, I feel the explanations aren't given in more than a simplistic way by the EP staff because they are used to patients who just want to be reassured and don't care to know the "why" of it.  Last interrogation this week:  ICD is doing 100% of the pacing - yet they thought it was interesting that I was having PVCs on top of the beat paced by the ICD.  And with all the other PVCs it would seem, to this newbie, that the ventricals didn't bother reading the ICD manual.

A Really Helpful Idea Thank You Penguin

by SeenBetterDays - 2023-11-09 10:50:02

Hi Penguin,

I am one of the people who has had exactly that experience and had to go away and do my own research and take action when I suspected I had PICM.  It's really not great patient care to tell someone who is symptomatic that the pacemaker is working fine.  How is that helpful to the person receiving the message - it feels either that you are not believed or that they have done their part and now you're on your own.  It was an extremely stressful and frustrating situation.  I think you and Gemita are both spot on that we need to gather as much information collectively as we can so that we are more able to advocate for ourselves when we are not being heard.  Thanks to both of you for your contributions on this very relevant topic. I know that many receive excellent care and attention but, for those who have not been so fortunate, I wish that technicians/EPs would be led more by the patient's physical symptoms and how they are feeling rather than purely their device functionality -  just because the device is working does not mean that it is working for you!

Gramzo, Gemita, Piglet, Seen Better Days

by Penguin - 2023-11-09 10:55:31

Gramzo, you're right it is a technical article. I've been paced for years and I can't say that I understand the ins and outs of each explanation although I found some of the content helpful. 

Gemita - It would be helpful to 'de-construct it' into more patient friendly lingo .  

Piglet - I think that you and I have been paced for roughly the same amount of time and are both on device number 2.  To be fair, I've always had two x techs in appointments. One does the interrogation and reads out the figures and the other notes it all down - or at least that's how it used to work with paper notes. 

Seen Better Days - I had excellent care at the start of my pacing journey but clinics have got a great deal busier now.  It's really hard to advocate for yourself when something goes wrong. I empathise! 

Some of the references at the bottom of the article are worth a look.  There's some extra detail there. For example there's a piece about VT and it's incidence when caused by pacing for bradycardia with reference to AVD lengths and the MVP algorithm / DDD mode that may trigger the issue, and an interesting mention of the autocapture setting and how it can add to any existing (long) AVDs by a further 100ms.  

As mentioned in my original post it is important to know how old these references are, as technology may have changed. 

It's a great overview and a powerful reminder that how you feel is what really matters

by crustyg - 2023-11-10 05:20:12

We've seen posts here where contributors go to an in-person session, armed with lots of data and numbers - only to have the numbers dismissed, leading to dismay and resentment.

Our implanted devices are 'miracles' of technology and miniaturisation, but they only record what they are told to record.  We humans do a little better than that, and it's this that should guide the listening EP-team to consider an additional investigation which might reveal the cause of why we aren't doing as well with our device as expected/intended.

For this approach to work, it requires a little humility on the part of the teams that assist us: humility that something new may have developed, and humility that there may be aspects of our particular device which they hadn't considered as it relates to the patient in front of them.

All real experts are the first to acknowledge that they don't know everything - but generally have a pretty good idea of the list of known-unknowns.  The pretend experts, and those wedded to the Orthodoxy are sure that they know all of the answers.  Avoid them if at all possible.

ditto crustyg

by Gemita - 2023-11-10 07:07:23

I will work on something to include in the FAQs or some other prominent member page Penguin and I suggest you and others might like too as well?  We can then compare notes before we actually publish something that might be of help to members.  Two or more heads will be better than one and a page on this important subject is important to get right.  

As crustyg and many of us are always saying on this forum, our symptoms and how we feel are what really matter and we need to get this point gently across to our doctors when they come back with “The pacemaker is working as it should”.  Don’t minimise symptoms if they are really troublesome and mention your most important concerns first, so that these will be addressed during an all too brief appointment (at least here in the UK). 

Fortunately I have an EP who isn’t only interested in those numbers, data coming from my pacemaker downloads.  He is often more interested to hear how I have been feeling and this is exactly as it should be and has made such a difference to my care.

Good info

by R2D2 - 2023-12-10 18:51:23

I haven't read the article yet, I decided to read the comments first to decide what to glean from it all. I'm already tired of hearing that my device is doing what it's supposed to do. And I'm only 5 months in with this circus. Some days I think I shouldn't have gotten it, since the one thing the pretty much convinced me it probably wouldn't do because of my individual heart issues, it did. Now I'm afraid they won't be able to tell me why, or how I might be able to prevent it in the future. 

But knowledge is power, and I will learn everything I can and be my own advocate.