First pacing checkup

Changes to Settings

by Penguin - 2023-08-29 04:44:08

Hi Robert, 

Your post brings up territory which is familiar to most people with a pacemaker.  Techs do sometimes change settings without telling us. This can be challenging and lots of us find it annoying. 

What you have done e.g. calling the clinic and expressing your concern / describing the feelings is entirely the right thing to do. Your clinic have clearly responded well, apologised and helped you and that's very encouraging. 

You say that things have improved but are far from perfect.  Maybe give it a little more time as sometimes these things take time to settle. After many years of pacing I have learned that it is often best to wait and see if the expected improvements happen over weeks, rather than to expect immediate improvement / perfection. Be reasonable and patient if you can manage this whilst feeling these (uncomfortable) symptoms but also persistent if things continue. 

You mention endless loop tachycardia / PMT (Pacemaker Mediated Tachycardia) and Pacemaker Syndrome.  I will offer some info on the former (PMT) which may or may not be useful:

PMT can be detected and terminated by your device. There is a setting called 'PMT detection' which should be switched on. When this setting is programmed you may feel some PMT before this algorithm terminates it. Perhaps this is what you are feeling ? 

Ideally the underlying cause of PMT should be looked into if this is what you are dealing with. 

What the techs can do: Your techs can set alerts so that PMT episodes are counted and can programme the device so that PMT events are printed out for verification when the device is interrogated.

What you can do: You can organise a download from your home monitor when you feel the symptoms. Just ring the clinic and they will tell you how to do this.

Also keep a record of when you feel these events (times/dates and what you were doing and what your symptoms were.) All of this information can be helpful to the techs when determining the triggers and how to avoid future episodes.

Reply

by robert9034 - 2023-08-29 05:02:19

Thanks for the advice Penguin. I guess my concern is there was something which prompted the original change.  Although I had been told the pacemaker would only kick in if the heart rate dropped too low apparently it had been kicking in 99% of the time.  The change reduced that to 63% but made me feel unwell.  The change back to the original settings was just to undo the new problem and nothing was done to address the original situation. Seemed to be just a superficial panic / begrudging change back. So as far as I know , no changes have now been made as we are back to square one 

Post Deleted

by Penguin - 2023-08-29 07:01:11

Hi Robert, 

I've re-read your posts and I'm not sure I've answered you terribly well.  Start again...

When you went for your first post implant check what did you ask ?  Did you mention that you seemed to be receiving more pacing than you expected or report any symptoms / concerns? 

Are these symptoms / concerns still present? 

You're not being difficult!

by USMC-Pacer - 2023-08-29 13:53:13

YOU have to live with this thing implanted in you. If you don't complain, they won't know anything is wrong. I was having issues during exercise that I thought was just an upper rate issue (MTR).. after they increased that, I was still having some issues. Initially they said there's no other changes they can make :( , but I persisted until finally the EP got involved and they turned off the PMD (I think it's on be default), and made some adjustments to the PVARP and that fixed everything for me! Point is you have to campaign for yourself and be that squeaky wheel to get the grease. 

Reply

by robert9034 - 2023-08-29 14:24:14

Hi USMC 

One is always reluctant to make a Fuss but I believe you are right. Press and be assertive  while being polite seems to be the only way to get a response. At first I was fobbed off with another appointment a year on. By being pushy I think I will see a more senior person within the next few days. My life, my heart so if I don't push no one else will 

To Penguin. I didn't ask anything. I didn't think it was anything other than a check it was working . Symptoms albeit less so still exist. I am pushing very hard for a proper assessment and seem to be succeeding Robert

Robert

by Penguin - 2023-08-29 15:36:06

I hope you get the answers you need. A bit of help / reassurance now could make all the difference in achieving a positive relationship with your clinic going forwards . 

Best Wishes

Being informed

by Lavender - 2023-08-29 16:02:20

I can't say how it works in your country. Here in America, the pacemaker tech cannot make any changes without the cardiologist or EP approval. I'm always told if there's a change and why. 

To Lavender

by robert9034 - 2023-08-29 17:03:24

It's very different in the U.K.  The NHS acts as if it's doing you a favour because it's funded by taxation and not paid at the point of use  They also tend to treat you as if you are a bit stupid   So the technicians just made the changes without telling me and without checking with a doctor Sadly you have to be a bit pushy to get it dealt with properly which I'm able to do. Latest is that despite the techs telling me to go away and come back in a year I now have them willing to see my in a few days and by a consultant 

NHS UK

by Pacesister - 2023-08-30 07:14:36

Sorry Robert feels that way. My NHS technicians are amazing.  Explain everything  all through my visits, couldn't  be  more  helpful. 

Tp Pacesister

by robert9034 - 2023-08-30 07:35:45

Guess its just luck who you get. My emergency treatment was first class . 999 to in the operating theatre within 3 hours. Its the after care which has been poor  Promised rehab but instead got a letter saying it was not avaialble due to reorganisation  Promised a follow up consuttation in 2 or 3 months Instead gor a letter offering a telephone consultation after Christmas. No discussion with technicians, adverse reset, struggle to get it fixed. Maybe I've been unlucky except two consultants i know personsally have both said its typical of the NHS now

NHS

by piglet22 - 2023-08-30 08:08:00

I'd have to agree that NHS care can vary considerably in quality.

Of course that can be down to individuals, but it also comes from how the department is managed.

I worked in an organisation that was obsessive about bad news going upstairs. Consequently, senoir management never got wise about things going wrong, people at the sharp end kept their mouths shut and never did more than was in their job description.

We've seen recently in the NHS what happens when concerns aren't acted on and people die as a result.

I do get the impression that the cardiac technicians are under orders to say as little as possible and not to offer information unless pressed.

Slightly more contentious is the impression that the care you get depends on your profile.

If you are a kid that poked something up its nose for fun, they fall over you to help. If you are a bloke of later years you can sit and wait for a long time.

The NHS did well during the Covid crisis and rightly got a lot of support, but several years on, things have not recovered. I was treated so badly by a grumpy radiologist recently, that I put in a formal complaint. If you've had a bad day or don't like the job, then don't take it out on the patients.

As for the funding and how it affects your relationship with the care providers, it's really no different if you pay a monthly insurance premium or you pay indirectly though general taxation and National Insurance. Paying through a company probably gives you more of a connection to what you get in return.

latest from clinic

by robert9034 - 2023-08-30 10:52:22

This is what I've now been told. It's beyond my area of expertise so any comments or suggestions as to what adjustment might help would be welcomed PMT Pacemaker induced Tachycardia? VIP some kind og logarithm?

"Yes, we received your transmission which confirmed that you are still experiencing some of these PMTs, although these are being caused by ectopics (premature atrial beats), rather than VIP which has been explained before). I have spoken to the manufacturer of your device and confirmed some setting recommendations, which we will adjust when we see you in clinic.

However, you have mentioned concerns regarding your device pacing 99%, this was identified at your original 6-week appointment and is caused by your own heart rhythm having a long electrical delay between the atria and ventricles. My colleague programmed on the algorithm, VIP, to reduce this, which was successful in reducing the pacing from 99% to 63%. However, this then resulted in the PMTs which were triggering your symptoms, hence why we brought you back in to turn it off. Therefore, we are effectively stuck between a rock and a hard place as the saying goes, because we can either programme you with VIP on, which caused the PMTs, or VIP off which will result in 99% pacing burden. We will discuss with the company who make your device if there’s any further setting changes they can recommend."