One year checkup

Not Good for PM Implanted in 2022

by Penguin - 2023-04-12 15:55:09

Hi again, 

I hear your frustration loud and clear and hopefully your doctors / GP will hear it too. 

You've clearly just seen your pacing clinic - which is a good first step. They have obviously provided you with some information that you are finding confusing and no doubt a little worrying / frustrating.  I will try to offer some help / information which you should obviously double check with a medical professional when you see one.

1. Lead Impedance -  Hopefully 'letting the EP know' about the lead impedance issue will lead to an appointment for you.  I'm not the right person to explain lead impedance issues to you as my own knowledge isn't great. As far as I know 'within tolerances' means that your lead(s) are working OK for now.   This may need to be reviewed.

2. AF 100% of the time must be incredibly uncomfortable, if you are symptomatic, and clearly this dangerous rhythm disturbance needs to be dealt with via medication or some other means. I trust that you are receiving anti-coagulation meds?  Low rate AF tends to receive less attention than the higher rate episodes that some people experience. You don't state the rates at which your AF occurs. Do you know? 

3. Cardioversion, as I understand it, isn't necessarily always successful at treating persistent AF but, as a positive, it doesn't carry as many risks as an ablation.  It could be considered as an 'initial' intervention for AF which isn't established.  If it hasn't worked the first time and you are now in AF 100% of the time, I would be concerned that a second go at it may not work either, but that is something for you to weigh up and consider yourself.  You need to also consider the alternative suggested - ablation.

4.  An ablation is a procedure to consider very carefully as it is invasive and creates scar tissue in your heart to stop the AF. This British Heart Foundation link explains what happens. https://www.bhf.org.uk/informationsupport/treatments/ablation

The risks vs benefits of an ablation are certainly something that you will want to discuss with your EP and possibly your GP in the first instance.  It may be helpful to post on here for advice from people who have been offered ablation as a means of stopping their AF.  There will be varying opinions and outcomes but this may help you decide whether or not to press for this.

4. Re: Referrals. As you have been advised the GP is the gatekeeper for referrals in the NHS and you will need to go via this route unless the technicians speak to the EP and the EP decides that he/she wants to see you urgently re: the AF and lead impedance issue. 

It may be helpful to outline your concerns in a letter to your GP and to tell the GP why you feel you need to see your EP and to explain the current situation with your AF and it's progression despite the cardioversion.  

Wait for more replies re: the lead impedance issue as I have not answered you terribly well and you could do with better information if you want to make a case for referral with your GP. 

I hope you can get this matter sorted out as promptly as possible. 

Thankyou

by mar892ree - 2023-04-12 16:33:22

Hi Penguin

Always appreciate any replies/ comments .

I think I just want - what everyone wants , to feel well / better .

I've had / have issues that I didn't have pre pacemaker,  or that's what it seems like . Maybe a coincidence?

I'm just extremely frustrated with the " system" , no one seems to explain anything ! GP doesn't seem to want to do anything , can't see or speak to cardiologist,  and pacemaker technician isn't a Dr , so can't really comment on anything other than settings etc .

Yes I'm on 5mg warfarin daily and I'm not equipped/ aware of AF episode incidence.

I do remember technician saying something about milli seconds or something,  but again not explained.

All I know is I'm 100% paced for last 103 days ? 

Mark 

I get it!

by Penguin - 2023-04-12 17:08:13

Hi Mark, 

Of course you want to feel better and it's clear that you feel incredibly frustrated and just want some information / reassurance or dare I say, action, if required. 

I'm pleased you have the anti-coagulation in place. That is reassuring.

It is scary when the amount of pacing goes up to 100%. Mine's been very high in the past and I remember feeling as if the PM was taking over and yet I had no explanation as to why pacing was so high.  You need to understand this if it worries you and if nobody has explained.  It will put your mind at rest. 

Your previous posts are a little confusing. Do you have complete (third degree) AV block? I ask because this would explain 100% V. pacing.  As far as I know AV block (certain types of 2nd degree block) can progress and this too might lead to 100% v.pacing.  Again you need to know what's going on.  It's your health afterall. 

I don't know how technicians determine the % of AF either, but am aware that intermittent / paroxsymal AF can become persistent and that's not a good thing. As I understand it AF becomes harder to treat as time goes on if it becomes persistent.  Early intervention measures/ prevention measures / meds or measures to control it when it occurs are all things to consider and explore with your GP.  Anti-coagulation is important but other meds may be necessary whilst you and your GP / EP consider how to deal with it. 

Pacing is confusing. The stats / nomenclature / terminology and settings all seem to be designed to keep us at arms length sometimes, but it's worth keeping in mind that this device is in your heart and is therefore entirely your business and of interest to you! Keep asking questions and keep up the persistent firm demands for information and help. You've only got one heart and wanting to look after it is not only understandable but necessary! 

Good luck x 

One year

by AgentX86 - 2023-04-12 22:49:44

I'm sorry to hear that you're in long-term persistent or even permanent Afib.  You can try a cardioversion.  It's cheap and easy but it's highly unlikely to work if your AF is this far down the path.  My first cardioversion held for seven years.  My second, five minutes and third, not long enough to measure.  The difficulty of an ablation increases and the probablility of success falls through the floor the longer the Afib goes.  The longer it's untreated the faster it progresses but it progresses anyway.

As Penguin notes, the big danger is blood clots (stroke) so anticoagulation is a must.  It's interesting that you're on warfarin. That takes some work to keep balanced.  I was on it for a while but I haven't heard of anyone using it lately. NOACs (DOACs) are so much better but also far more expensive.

Anti coag

by mar892ree - 2023-04-13 00:59:45

Hi Agent X86

I'm afraid what ever happens or is offered to me in the way of treatment is entirely upto the Cardiologist , whom I've only ever seen once ( briefly) just before my PM procedure.  Apart from that I've had one follow up call from him . 

I was on Apixaban , but the Cardiologist said I'd be better off on Warfarin - something to do with being over a certain weight !!