Turn it down?

My PM followup was transferred from the EP's office following the implantation and two appointments,  to the PM clinic of my cardiologist's office. That's comprised of a Device nurse and a tech from the company, Biotronik. After an initial meeting in person, it will be via telephone.

The nurse called this morning and was more cheerful than I'm typically comfortable with. She said at our meeting she's going to "turn my device down* because I'm healed and it was turned up at implantation because while healing it requires higher settings.  She said I don't need that much "electricity" now and we want to save the battery.

Here's the thing.  For about two weeks, I've felt really good. I'm very concerned about changes when I'm feeling good. I asked if I don't feel as good, will it be adjusted? I think she said yes, but I'm not certain.

I haven't heard of this before. I'm not sure what "turning down" is. Do es this sound right?


15 Comments

Turning it down needs to be clarified !

by Gemita - 2020-12-04 19:31:13

Pharnowa,

Good to hear from you.  If I recall, you were having a lot of difficulty with a migrating pacemaker and you were going to discuss the possibility of repositioning it to prevent long term problems in the future.  I respect however whatever decision you ultimately came to and I am assuming that you decided to leave well alone?

The only aspect that concerns me at the moment is why are they already looking to conserve battery life with your new device?  Turning down the power suggests to me that they might primarily be concerned about premature battery drain.  I wonder whether the migration/position of the device/leads might have something to do with it, although I may be missing something here.  Update, yes I clearly am - see Sisterwash65 contribution below).

Modern pacemakers use battery current not only for pacing but also for other functions such as obtaining measurements of diagnostic data, measurements made by rate response sensors, and implementation of algorithms, such as for mode switching.  Pacemaker battery life therefore depends on a variety of variables, including baseline battery self-discharge, current drain for device housekeeping functions, current used to pace the heart, and current to sense the underlying heart rhythm.

Factors controlling current drain with a pacing stimulus include pacing rate, per cent pacing, programmed voltage, pulse width (PW), and lead impedance. 

I am not certain which items highlighted above would be adjusted (turned down), maybe more than one, so I would seek clarification. I wonder whether they intend turning your heart rate down too?  If you find that you are getting symptoms from these changes, then I would  tell them respectfully that you got a pacemaker to improve your quality of life and you would like the changes reversed to reduce any symptoms.  If they say this is not possible because of premature battery drain, then you might respectfully ask whether repositioning the device would help to prolong battery longevity?

But maybe I am speaking out of turn and all will be completely fine.  I do hope so.  

Turning it down...

by Sisterwash65 - 2020-12-04 21:29:44

I was told the same thing. When the PM is placed, it is programmed a little above what's necessary in order to get your heart used to being paced. Mine was placed at 3.5 and a month later was " tweaked" down to 2.0. My doctor said something similar about healing.From what I understand, this is common practice. I was also concerned about this and told my doc and the rep that I felt good, " please don't change it much !" However, after the change I could tell no difference. A few months later at my second device check, it was " tweaked " again. And again, I couldn't feel any difference. As time goes by you'll grow to have more trust in your doctor. I know I have.

Thank you Gemita!

by Pharnowa - 2020-12-04 21:56:24

I had two opinions on the positioning. First, I was told the EP is highly thought of and Board Certified, and if that's where he placed it, it probably was optimal to him. The second opinion said I am thin and he didn't see anything wrong with the spot chosen. Both have left open the option to move it. It isn't bothering me so I'm doing nothing currently. 

I have not had my meeting with this person who stated she's going to  "turn down" my PM. It's in 10 days. She said when healing I needed more "electricity" but now that I'm healed she needs to turn it down.She said it needed more "electricity" to go through healing tissue. I think she's not respecting that I'm not 7 years old and capable of understanding. She hadn't seen the positioning so I doubt there's much thought to that My cardiologist may have noted it in the chart but he didn't see a problem with it.

I don't know that anyone can declare someone healed in 3 weeks, but I haven't heard this explanation of turning it down by anyone previously. I can't say I'm concerned about the battery at all. She seemed to present it as common goals to save battery life. I didn't get the impression it was anything specific to me. My interrogation done two days ago at the EP said battery life was 7 years, 5 months.

I am admittedly upset. I've had AFib for 4 years. I've felt pretty bad. Finally, about a week after the Implant I felt very good. To hear that my device has to be "turned down" to save the battery and because the PM was turned up initially is concerning. I think the ultimate cruelty is to feel better then have it taken away.

I've decided I'm going to call her and discuss this further on the phone. I saw the Device nurse twice at the EP and I was comfortable with what he said and did. If need be, U think they'd let me stay with them but they do encourage return to your cardiologist for follow up.

Thank you Sisterwash65!

by Pharnowa - 2020-12-04 22:03:03

That's reassuring to know. It's the device nurse I'm questioning. I rreally dont want to feel badly again.

 

Hopefully all is normal

by Gemita - 2020-12-04 22:14:50

Pharnowa,

Take a look at Sisterwash65 helpful post (? on voltage changes) which confirms more or less what you were told.  

I have never been told of any changes over two + years.  Indeed they always confirmed "there were no changes" during my checks but we all have very different conditions and this will affect our pacing requirements. 

I would still query specifically what will be changed, particularly if heart rate will be changed and request a copy of any changes for your records so if you become symptomatic again they can be adjusted back to perhaps where they were?   A heart rate change for example would definitely be noticeable.  

Oh we are all learning aren't we !   Well done Sisterwash65 !

I attach a link on voltage settings from an old Pacemaker Club thread which might be of interest Pharnowa and Sisterwash65.

https://www.pacemakerclub.com/message/26274/voltage-setting

 

Changes.....

by Pharnowa - 2020-12-04 23:46:26

I agree about keeping records of what is changed. i.am grateful for the helpful information from Susterwash65!

It just seems there are so many things that CAN be changed that if one feels great, I'd prefer to not touch it. 

I would really protest if the heart rate is changed. I'm set at 60 and I'm really comfortable with it.

Thank you again!

turning it down

by Tracey_E - 2020-12-05 08:31:10

They should only be turning the voltage down, not the rate. This is perfectly normal and you shouldn't feel a difference. It's better for the heart and will make your battery last longer. They only have it up higher until scar tissue forms, it was never intended to be left that high long term. 

Thank you Tracey

by Gemita - 2020-12-05 09:24:23

I wonder if you could kindly explain how a build up of scar tissue enables voltage to be reduced? 

Thinking about scar tissue in general, I would have thought the opposite, that extra power (higher voltage) might be needed to pass through scar tissue, rather than a reduction in voltage power, but this is all new to me.

Or am I looking at this in the wrong way.  Is scar tissue in this respect, regarded as protective, healed tissue following lead fixation and once healing has naturally occurred, they can safely change settings?  How do they actually know when we are healed sufficiently?  Can they tell from pacemaker interrogation, or do they say allow a set period of X weeks for each patient?  Time to formation of scar tissue I would imagine would be different for each patient, so I think Pharnowa's question about whether healing is complete at say 3 weeks, is a valid one.

Based on what you say, I presume my voltage has been adjusted downwards too at some stage.  

scar tissue

by Tracey_E - 2020-12-05 11:16:09

That is an excellent question! That's what they told me but I didn't ask them to explain more detail.  I'm just guessing but I think it's because the lead is more secure, it makes sense that scar tissue means it's attached better. I believe it's a standard 4-6 weeks because they usually do it at the first check. 

Scar tissue etc

by IAN MC - 2020-12-05 11:42:32

It has always been my understanding that almost everyone has the PM voltage reduced at the first PM adjustment session.

What scar tissue does to electrical current is in a way irrelevant ..as the main objective of the EP is to start with a voltage which will GUARANTEE  pacing ( i.e. the creation of a heart-beat ).  If this voltage is too high , not only does it shorten the battery-life but it is also more likely to pace the diaphragm which is undesirable.  It usually is set too high !!

The objective at the first PM adjustment session is to re-set the voltage to an OPTIMUM level . This is the minimum level necessary to create a heart-beat ( with a little extra added to be on the safe side ! )

You need not have any concerns whatsoever .....this is normal practice as Sisterwash says.

Best of luck

Ian

Thank you!

by Pharnowa - 2020-12-05 14:54:58

Thanks for those explanations, Tracy_E and IAN MC.

I would miss how good I feel!

My Two Cents

by Marybird - 2020-12-05 16:04:47

I appreciate all the explanations, they make sense.

I wasn't aware that pacing voltages were often set at a higher rate at implantation of a pacemaker and lowered at subsequent in office pacemaker check visits. I guess this is meant to counter the effects of the inflammation around the tissue where the leads were implanted ( foreign body reaction, reaction to the surgical "insult") which probably provides some impedence to the electrical signals from the pacemaker.

Interestingly enough, the voltage on my pacemaker was set at the minimum from implantation. I was informed this is where it was the following day after implantation by the pacer tech in the cardiology office where I was instructed to follow up with a pacemaker check. She explained that my heart was responding well to pacing at the minumum voltage setting ( she found an atrial pacing rate of 83% that day), and that this would save on battery life. I've had several pacing checks in the office since then, it's still at the minimum voltage and still responding well ( with an atrial pacing rate of 91% with the minimum heart rate now set at 55, and the rate response turned on at my 5 week checkup), and I have not needed any further setting adjustments, so I guess the EP pretty much got it right at the beginning. Lucky me.

Ian, great explanation of the pacing voltage and scar tissue. I'd read that scar tissue ( consisting of fibrotic tissue, and not so much normal cardiac tissue/cells) doesn't conduct electrical signals well. The impression I got from what I read was that formation of scar tissue around the lead tips into the cardiac tissue could become a problem with some people (not everyone) as time went on. This could lead to diminished responses by the cardiac tissue to pacing signals so that an increase in voltage was necessary to get through the scar tissue to the cardiac cells so they'd react and pace properly.

When I looked up everything I could scour around and find about pacemakers, leads, tips, and so on, I saw that it's customary for many pacemaker lead tips these days to have embedded in them a steroid-eluting component. The purpose of the steroid eluted into the cardiac tissue around the lead would be to reduce the amount of post-surgical inflammation in the cardiac tissue, and possibly the formation of excess scar tissue later on ( scar tissue forms in areas of inflammation.).

I don't know that all types of pacemaker leads implanted these days have the steroid eluting component in the tips, but when I looked up the specs on the leads I had had implanted in June 2019, I see they did.

Just thought that was interesting.

 

Thanks Maryburd!

by Pharnowa - 2020-12-05 23:30:54

That's interesting and I do feel better after receiving all this information.

Thanks!

Scar tissue

by Gemita - 2020-12-06 05:08:36

Thank you Tracey and Ian for your comments.  I have always thought as Marybird so clearly expresses that scar tissue can cause problems and therefore may require, over time, an increase in treatment rather than the opposite, hence my question.  Scar tissue elsewhere in my body certainly requires extra help and manipulation, but I won't say any more!

Pharnowa I think we can both be reassured that from your improved symptoms alone, your pacemaker team are doing their best.  I hope you have a helpful discussion with the nurse when you return soon.  At least you have got lots of useful information so you are in a much stronger position now to ask any questions and to fully benefit from any answers.  I am hopeful that you will be fine from now on and I am sorry if I may have caused any unnecessary worry from any of my earlier comments.  It has been a learning process for me too

Gemita, you always help!

by Pharnowa - 2020-12-06 13:21:27

Your detailed, thought out explanations have enormously helped me, always.

What I knew about PM's was limited to people get them and then live better. That's all. 

Because if your willingness to share such detailed information, I even knew to gently confront the PM about where he placed my PM. I now know many settings to inquire aboutt. I even know to ask for the interrogation reports! I can't understand all of it yet, but some of it I do!

I am grateful to you and all of the posters!!

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