Different aspect of device that can be adjusted

Confused?

by Penguin - 2023-09-22 04:48:13

Hi FullerCM, 

I'm not firing on all cylinders this morning, so it could be me but I'm a bit confused by your questions. 

Do you mean that adjustments made in appointments resulted in

1) your EF% reverting to what it was pre-pacing e.g. lowering perhaps? Note: an EF% is not an 'adjustment'. Very crudely, an EF% describes the % of blood that your heart forces out when it pumps. Usually, an EF% is measured when you have an echocardiogram and it is one of the measurements used to describe how well your heart is functioning.

2) that you were switched to single lead pacing although this was not how your pacemaker was originally set up?   Note: You need to understand why they did this.  There are good reasons, but these reasons should be explained to you. 

Re: Adjustments -  When pacemakers are first taken out of their packaging they have 'factory settings' in place.  These can be adjusted so that they help you and your particular heart condition.  Personalisation if you like. 

If you request a copy of your interrogations and settings you will see a long list of the settings for your PM.  There are too many to go through on this post and tbh many of us on here would struggle to describe each and every one of them and how they might affect you.  Different brands of PM also have different settings, although the main ones are roughly the same.

In your case I'd ask about the settings which may be affecting your EF% and ask your techs to explain how this is happening.  I'd also ask your EP for a copy of your echocardiogram pre and post pacing and set up some time to discuss the results if you haven't done so already. 

And a little more

by crustyg - 2023-09-22 06:30:37

Penguin has provided some wise words.

In answer to your original question, then you would need to get hold of the device vendor's reference guide to the device.  Most of them are available after a little web searching (always select the 'Professionals' option at the vendor's site for the docs).

Pardon me for stating the obvious, but there's a lot of detailed electrophysiology in these docs not all of which will make sense at first.

My advice would be to politely, and firmly insist on a copy of your device settings towards the end of all in-person sessions where your device may have been (re)programmed.  Take a USB-stick/thumb-drive with you, or failing that ask for a print-out.  If they resist your request, gently remind them that you've previously had a lead turned off (by mistake?) or that your settings have previously been changed without your consent.  If they still resist, point out that you *WILL* make a formal subject access request to get all of your records which must include your PM settings.  Much slower, but you'll be able to see who did what, and when.  Under this pressure, most professionals will give in with good grace (but not all, sadly).

Repsonse to comments

by fullercm - 2023-09-22 09:00:13

Thank you CrustyG fo your advice on asking for printouts etc.  I usually like to be fully informed about my health care so will start requesting printouts.

What happened in my situation was making the wrong adjustment.  I went back to how I felt before the device was installed. Disconnceting connection to one of the leads was not called for lead me to feeling that way. Thankfully I finally got a cardiologist who saw that it was done and changed it back and now I am ok.  I am sure there is more to it, but I see now that though trained not all clinicians are equally capable of making adjustments and neither are all cardiologists knowledgeable or perhaps just don't have time to check all the background of me and my device.  Even though they do not install Biotronik devices where I live, they are supposed to be able to read and adjust them. This was confusing for a couple of the clinicians and this led for adjustments that made me almost pass out and unable to hardly breathe when I did any activity.  When second lead was put back on this all went away within almost immediately.  I will make sure I go for an appointment when this cardioloigst and senior clinician are working.  Now I am back to pacemaker normal.