Pacemaker replacement

Hi

Not posted for a long time now. I recently had my device changed after 7.5 years ( can't believe how quick it's gone). Went from a St Jude's to a Biotronik, both duel lead
Proceduce went well , just a horrible few seconds whilst my heart decided if it was going to beat on its own. I have complete block but still retain an intrinsic rate of approx 30 bpm. 
Unfortunately I'm having problems with exercise and my new device, settings were put to my previous levels but getting terrible diaphragm pacing and breathlessness when out walking or kayaking. 
Going back for another check ( previous attempt to see if anything was recorded ended up with the pm going into emergency pacing. We don't know what happened) 

Posible cause is an in built logrythm that is thinking I've got PMT and blocking me out. 
Any other folk have had problems with optimising a new pacemaker. So frustrating as I had so many problems with getting the settings right for me with the first PM. 
Thanks for any ideas 

Jane. 

5 Comments

Did you discuss the change of vendor/model with EP-doc prior to replacement?

by crustyg - 2022-11-07 12:59:52

I'm years away from replacement (I think/hope) but given the efforts by my team and myself to get my PM tuned, I'd be very concerned if someone dropped in a different vendor/model, especially as you say that you had a lot of issues getting the last PM setup correctly for you.

In your shoes I'd be pestering my EP-doc about the need to have some time/resources/money spent getting this new device setup correctly - reminding everyone of the effort required for the last device.

And don't stop pushing until you get what you need.  It's your device, your lifestyle and your life.  Your medical / EP-team advise and diagnose, but you're the one who suffers if it's not correct.  Getting Biotronik CLS tuned correctly seems to be non-trivial.

Biotronik Settings

by Mad Hatter - 2022-11-07 15:04:44

I am three months in on a Biotronik Edora 8 DR-T dual lead and had a follow-up 11/1/23 which had been rescheduled due to a conflict in the EP's schedule.  I had adjusted well to the pm except for having dizzy spells on rising from any position with my head down (pulling weeds, looking under a counter, kneeling down to pet a dog, etc.).  I mentioned this to the pm tech on my first check a week post pm but she said she didn't see any events and I didn't see the EP on that visit.  Now three months in the EP says getting the settings right is like tuning a Stradivarius and may take some back and forth with the tech.  The tech then consults with the manufacturer rep and changes my settings from DDD-CLS to DDDR.  She said the former was more for older people who are not very active.  This was interesting because I had told her on that first visit that I am an avid runner and wanted to get back to running as quickly as possible.  Interestingly, the former settings did not affect my running as I completed a 10K a week ago with no issues.  I have no idea what the settings mean, but the new setting seems to have worked with the dizzy spells.  I've been very disappointed with my EP and tech in terms explaining what the pm is doing and the impact of lifestyle on my settings.

I see you are close to my age and active, so I mention this to encourage you to be more persistent than I was about asking questions and getting your settings adjusted.  Also, there is a Biotronik app that apparently lets you monitor some information your pm is recording, but I have not gotten it to work.  After registering I get an error that it can't communicate with the server.  The Biotronik people tell me it's something in my phone and they can't help me with it.  Very frustrating.  But I'd be interested to know if you or anyone else has success using the app.

Good luck and God bless.

programming Biotronik

by Tracey_E - 2022-11-08 09:00:32

If you pace with rate response and had trouble getting your last one programmed correctly for actitivy, Biotonik can be an excellent choice for you because it's rate response works totally differently. However, CLS has to learn you so it doesn't work perfectly immediately and likely need to be tweaked. If you don't feel right, go back. 

That said, with heart block we typically don't need rate response, so the answer might be as simple as turning that feature off so it doesn't compete with your natural sinus rate. 

Seconding Tracey

by Lavender - 2022-11-08 13:27:43

My rate response is turned off because my sinus node still works. My AV node is not working at all. They said I don't need rate response. 

Settings

by Jane S - 2022-11-10 13:53:34

Thanks for replies, 

Was back for another check as I got symptoms again on my last kayaking paddle. Nothing showed up but I was given a monitor to see if that can detect anything. 
Rate response is off, impedance is fine. My sinus rate sometimes goes inappropriately quick and I get a slow atrial tachycardia - the old device was tuned to try and not respond to it, we think the new one is reacting in a different way. 
The woman I see at the clinic is great so I'm hopeful I'll get there. 
Thanks again, always good to get different suggestions. 
jane. 

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I just want to share about the quality of life after my pacemaker, and hopefully increase awareness that lifestyles do not have to be drastically modified just because we are pacemaker recipients.