Device replaced!

I'm 2 months post Op from my first battery change! All went well. Got my first PM August 2018 for exercise induced 2:1 to high grade block. The first 9 months were a lot of pacemaker adjustments specifically for exercise. Then at about 11 mos post op my block got worse! I would only experience AV block if my HR went over 120bpm. Then suddenly it was happening at 100bpm then 90 then 70bpm etc etc until it was 24/7. 18 mos after placement the pacemaker was working 100% on demand. Scary to see! My underlying rhythm was still in 2:1 to CHB. I was using battery fast due to the change in pacing. Plus I'm a runner,  so I attribute it to that as well. Even though EP and reps say no. Ha! Ok! The last 3 years my battery finally settled out and depleted a little faster than normal. His post op note stated I was pacemaker dependent with a HR of 28Bpm and needed to be externally paced during the change out. That made my heart sink. At 46, I never expected to get a pacemaker. I was told I would barely pace and I too thought I would barely pace. I paced about 30-40% my first year. I had to overpace in the beginning to give me what I needed for exercise, so I probably only needed 10% of that pacing. I've learned a lot in these last 5 years being paced. I enjoy helping others. Especially with exercise settings. 
 

I posted a while ago about replacement and what to expect. Things I learned. 
 

ERI -Elective replacement indicator is different for each brand. I have Boston Scientific and at ERI pacing settings do NOT change for accolade. Whew. That was a relief. The settings change at EOL- end of life. Once it triggers ERI, you have 90 days to replace. 
 

Surgery was easy and quick. I was fully asleep. He did move it up higher and inward. Not sure if I like it yet. I do like it not popping up when I lay on my side or feeling it in my armpit. But we shall see because I developed TOS from my leads. TOS thoracic outlet syndrome. Basically horrendous nerve pain! 
 

I got to keep my first PM. It looks brand new! It lasted 4 years 10 mos. I did NOT have to wait for ERI to have it replaced. The day of surgery I still had 2 mos before ERI, so basically 5 mos to EOL. So talk to your doctor when you get closer to replacement time. I felt better knowing my device I had full function until EOL. It's awful to feel Low battery mode and I think all insurances should approve before it hits low battery mode or the other device companies needs to define ERI so no one has to experience that mode. Glad to have Boston Scientific for that feature alone. So far this battery says 7.5 years. We will have a better estimate 3 mos post op. 


12 Comments

Replaced

by AgentX86 - 2023-08-21 16:44:39

It's really good that everything went so smoothly.

It's not at all unusual for a Mobitz-II heart block to get worse. I didn't get to where it was overnnight, but you weren't symptomatic until that point.  Once you have the pacemaker, it really doesn't matter, except you are now dependent (that didn't change overnight either).

The pacing percentage doesn't alter the battery lifetime much. Five years is on the low side but not terribly so. You had it replaced early because you are dependent.  If you weren't, you likely would have waited until at least ERI. Any battery estimates at this point are, well, pointless.

AgentX

by PacedNRunning - 2023-08-21 17:57:44

It definitely was a progression to dependency. My doctor didn't expect it this soon but no one really knows. I was told battery life is 50% pacing usage and 50% housekeeping tasks. Watching it tick down was interesting. It was pretty much on point from 3 years out. Up until that point it fluctuated a lot. I liken usage to car oil changes. Here me out. Say you need oil changes every 10k miles. It takes you a year to get there but takes me 6 mos because I drive more. So sooner to the oil change. I feel the same with the battery. Majority of PM patients are older and more sedentary. So that's what they see the most not people who are active with faster HR's 2 hours a day minimum. 

The EP didnt consider me dependent prior to the surgery. Next time I'll wait for ERI if I can. 
 

I think you were one of the first people I talked to when I was told I need a PM. My question was can I cure it?  Heck no was what I was told. :). 

Thank you for the update

by Gemita - 2023-08-21 19:03:50

PacedNRunning.  A new device, a new you?  I do hope so and that you will soon notice real benefits from the new technology.  Very good news.  I know you have been apprehensive about when you would get a replacement, so am pleased it is well behind you.  

I am glad the procedure was easy and over quickly.  Is the Thoracic Outlet Syndrome still a problem or will the repositioning of your device help?

Just a couple of questions.  Why is battery life only estimated at 7.5 years on your new device?  Will this likely improve at 3 months post op estimate?  I would have expected longer battery life with a new device, say around 10+ years or am I being too optimistic.  Also do you have any new features that you can share that might help with pacing or with your exercises?  Anything clever for ectopic beats or other arrhythmias?    Did you have a choice of manufacturer/model of pacemaker? 

With a high percentage of right ventricular pacing, have you noticed any deteriorating symptoms or are you tolerating RV pacing well?  I know you had reservations about a high level of RV pacing at one time, but I believe we all felt that if any adverse effects were going to happen, they would happen quickly or not at all.  

Thank you for all your help with my settings.  I have got a new EP who is willing to listen and to try out my ideas!   I feel I am making progress with my Settings at last

congrats

by Lavender - 2023-08-21 20:37:00

I was very interested to read your report. Sounds so upbeat! I too have a Boston Scientific and will need a new device in about 5 yrs. Your first device did not last too long! Cool though, that you have it for show and tell and to gross out grands and kids, etc. Mine do not want to hear about my pacemaker at all. LOL

May God heal you of the nerve pain! HUGS

Gemita :)

by PacedNRunning - 2023-08-21 21:21:32

 Is the Thoracic Outlet Syndrome still a problem or will the repositioning of your device help? The TOS Is still a problem as long as the leads are there. The compression comes mainly from the leads and the other part the device location.  I have stenosed area in my Subclavian vein caused by the leads.  Where the stenosed area is traverses close to my collarbone and the brachial plexus nerve. Thankfully the pain is under control and it took me a year to figure out how to manage it.  Took 6 months to settle the pain down. I don't know why he moved my device. I was told it would go back in the exact same area. It's definitely an inch higher and more towards the center of my chest.  I have a copy of my post op xray and previous xray and not only is the device higher, he didn't wrap my leads around the device.  I'm hoping for the nerve pain it's better but sports bra's and seatbelts bother the area with the new location. My previous location was 3" below my collarbone and nothing bothered it.  

Why is battery life only estimated at 7.5 years on your new device?  This estimate is at 2 months post op.  My EP does monthly transmissions vs quaterly and they upload them in my chart to see the data.  When I went in for my one week post op, It said 10years.  Both the tech and the PA looked at each other and said, "it will definitely go down."  I have the exact same device as the previous one. My previous one never said more than 7 years.  Even with minimal pacing.  I'm not sure.  I don't use much energy either but I do have low impendances and could be the reason.  My other one never said 10 years.  

 

Will this likely improve at 3 months post op estimate?  The explained to me it takes a full 3 months or 90 days to obtain an accurate battery life after new implantation.  So it will either stay 7.5 years or go lower.  

I would have expected longer battery life with a new device, say around 10+ years or am I being too optimistic.  NO you are correct. I thought the last device may have been a lemon. The year my pacing went from 40 - 100% in 6 mos, I lost 3 years of battery.  My model is on the early depletion list but my serial number wasn't one of them.  Hopefully this one lasts longer. 

Also do you have any new features that you can share that might help with pacing or with your exercises?  We are all so unique when it comes to settings. Not only for our specific needs but how the settings interact with each other.  I have found shorter AV delays are better for me since I'm mostly V paced and only A pace if I'm resting or sleeping.  So once I'm up moving around the A pacing ceases and at that point the AV delay is all based on sensed Atrial beats.  The sensed delay is always shorter than the paced AV delay because it takes time (milliseconds) for the device to see P waves or QRS waves before it returns the information back to the device.  When its a paced beat the deivce knows because it sent the pace and can time it much sooner than sensed beats. I hope that made sense.  Just think of how fast and slow the signal returns to the device. With paced beats, the device knows the exact time it sent the signal and times the V beat to that A paced beat.  With sensed beat the device has to sense first, relay the information and then the paced beat is sent.  My favorite setting for exercise is "rate smoothing" it may be called rate regulation in other devices.  When I was running, I was experiencing dropped A beats.  The device either couldnt' see my P waves because the tech said they shrunk when I ran OR I was having sinus pauses.  What was happening was my HR would be 160bpm, I'm running along an P wave gets missed or sinus pause not sure, but since I paced 100% VP with exercise at that time, it dropped me all the way down to 45 bpm my LRL.  Felt like I was being punched in the gut each time it did this. I would get the wind knocked out of me.  I had stumbled on a research article from the 1980's about paced athletes and this is where i read about rate smoothing.  I had a treadmill pacemaker adjustment session and this helped decide to turn on rate smoothing.  It's based on percentage from I think 3-25%.  We started at 18% and worked down to 6% where I felt great.  I still felt punching at 9% but 6% wiped it all way out.  Basically this setting will not allow more than a 6% fluctuation between beats for me.  So if I have an ectopic beat with a pause it will not allow it to be more than 6% from the last beat.  This helped me feel ectopics less. I still felt them but not as much.  I also have sinus arrhythmia which can be uncomfortable.  This fixed this as well. Sorry such a long answer, only because I know you appreciate them.  So shorter AV dynamic delays helped and rate smoothing was a life saver for me. It would take me several minutes to recouperate from those dropped beats.  

My LRL was 45bpm for a long time. Then we moved to 50bpm for a few years and the last 18 mos it's been 55bpm.  Not because of symptoms but because my settings just seem to blend well starting at 55bpm vs 45bpm. I'm tempted to try 50bpm again but my heart seem happy at 55. lol  I have a wide range from 55-185bpm. Felt better not starting so low.  

 

Anything clever for ectopic beats or other arrhythmias?   Rate smoothing. Most doctors don't use this any longer from my understanding. It was invented to help afib.  Doesn't hurt to ask or read up about it more and see what it has to offer.  

Did you have a choice of manufacturer/model of pacemaker?  I stayed with the same brand.  My first implant my doctor said he would implant any brand I wanted but he preferred Boston for lots of reasons.  He's the expert so I was happy to be a compliant patient.  I could have gone with an extended life (EL) version of the same battery but because of my TOS, I opted to not irriate things. I've had to make alot of lifestyle changes, I didn't want to risk it because the EL batttery can last upwards14years but a little bit bigger then the non EL

With a high percentage of right ventricular pacing, have you noticed any deteriorating symptoms or are you tolerating RV pacing well?  I actually tolerate 100% pacing better than intermittent pacing.  I use to switch to 100% V pacing once my HR went over 110bpm and I could feel it start and stop.  Once it started, I would feel it for about 2-3 mins and then I wouldn't feel it even though I was still pacing.  I always knew when it stopped. I could feel the switch.  My conditon is unique. Once my HR was under 110bpm, I would be in sinus rhythm again and pacing would cease.  My EF last check was 63%. It did drop after implant to 52% and then went back up.  I tire easily so I have to make sure to pay attention to my activity level day to day.  I've gotten use to certain things that make me out of breath. Which I think is partly pacing and how the heart is paced with 2 leads.  

I know you had reservations about a high level of RV pacing at one time, but I believe we all felt that if any adverse effects were going to happen, they would happen quickly or not at all.  You remember well!!! Yes, my EP's goal initially was to pace me as little as possible to avoid the consquence of high RV pacing.  It worked for about a year.  I think Tracey E stated her EP said if you don't develop PICM In the first 5 years chances you should be ok for many years. Something like that. I will be 5 years on wednesday. My yearly echo is April. So we shall see.  

Thank you for all your help with my settings.  I have got a new EP who is willing to listen and to try out my ideas!   I feel I am making progress with my Settings at last. You're welcome. Glad I can share what I've learned. It's alot!!  It's nice to help each other.  I'm glad you have a new EP.  I like ones that are willing to help us feel better. I love my EP and if it wasn't for him, I honestly don't think I woudl be where I am today.  All the best Gemita!!  Keep me updated!!

Thank you Lavender

by PacedNRunning - 2023-08-21 21:25:41

Thank you! That's pretty funny! I tried to show my son and he was like ewwwww. lol..

PacedNRunning

by Gemita - 2023-08-22 11:38:28

Oh what a complete response to my questions.  That is such helpful feedback.  Thank you.  Every time I see your name on this forum I think of positive things and see an active member and it is hard to believe that you too have a few difficulties.

I have just re-read your post and noticed the post op statement from your EP which stated you had a heart rate of 28 bpm and needed external pacemaker support during your procedure.  Even allowing for the anaesthetic meds, a heart rate of 28 bpm doesn't sound promising.  That combined with thoracic outlet syndrome would be enough to make a lot of us take the easy path.  Instead you continue to push yourself to your limits.  

The thoracic problem is something I can relate to when I experienced collarbone pain for months post implant until I developed collateral vein circulation because of a partially blocked subclavian vein.  Fortunately I seem to be completely symptom free now.  You clearly are not so lucky.  Strange about the leads not being wrapped around the device and the device being placed in a higher position.  When you can I would want to know why too?  I thought they always used the same pocket/position unless the pocket area was not entirely healthy to use for the new device, so they had to go slightly higher.

Battery life. I note your low impedance and see that low impedances could be due to lead insulation breaks that exposes the wires to body fluids.  Perhaps in the future you can get your pacemaker moved to the other side or have those offending leads removed/replaced to relieve some of your difficulties with battery longevity and comfort.

Thank you so much for another lesson on Settings.  I think my AV delays are pretty short too 180/150 ms.  I am jealous about your device’s rate smoothing capabilities.  I don’t have this clever feature, but have Atrial Preference Pacing instead.  I will try to make sure that my new device at replacement comes with Rate Smoothing.  It sounds good for me too, although my technician wasn’t so enthusiastic about it when I asked if I had this feature.  I want a feature to help regulate dropped beats, although from our discussions privately, I do appreciate adjustments to this setting can take time to optimise but your further, detailed comments are so helpful PacedNRunning.  Technician tried to tell me that at 70 bpm I shouldn’t be noticing any long pauses, but of course I still feel them.  Perhaps an increase in LRL to 75 bpm might help but I have achieved a high level of improvement already from a few other settings adjustments.  I think we are both sensitive to dropped beats.  I see that the rate smoothing percentage starts low at 3% which is probably where I would want it, to be symptom free!   I am going to try to find that 1980s article you mentioned.

I am so glad you are not affected by your RV pacing, particularly since you need it.  I know immediately when I am switched from atrial to ventricular pacing and I don’t seem to like it at all.  I think you are probably right, intermittent pacing or frequent mode switch changes are difficult to tolerate which is why I am happier when I am steadily paced almost 100 % in my right atrium.   Maybe one day if I ever need an AV Node ablation to disconnect my atria from the ventricles, I will be able to better tolerate permanent ventricular pacing, although I know this would only be done as a last resort if my Atrial Fibrillation progresses and becomes out of control.

Percent usage

by AgentX86 - 2023-08-23 11:44:20

More important to pacemaker life is how much energy is delivered to each pace.  The pacing energy may go up as the pacing voltage is increased or the square of the voltage.  It depends on why more energy is needed to pace.  A change from 60 to 70bpm amounts to a 17% increase.  A pacing voltage 2V to 2.5V will increase the pacing energy between 25% and 55%.

Agent X

by Penguin - 2023-08-23 15:29:42

Agent X - that's an interesting nugget of info.  Pacing energy = battery usage yes? 

Agentx86

by PacedNRunning - 2023-08-23 20:31:43

Yes the amount of energy and impendance play into battery longevitiy.  I have low impedance due to the type of leads I have. I was told because of my lead type, low impendance is normal for this lead.  My voltage my first PM was on auto threshold so it varied from 1.2v-1.3V. We turned off the auto threshold feature because I did not like the daily testing. It's now fixed at 2.0V. 

 

Gemita :)

by PacedNRunning - 2023-08-23 21:00:03

I will surely let you know why he moved it higher. My guess is the device slide down in the pocket because I'm so active.  

As far as the TOS. I did have the shoulder pain the first week and once I went back to full sports at 6 mos post op, it got angry.  I saw a top specialist in my area for TOS, a vascular surgeon and her words were.  This happens in young patients who are active. They don't tell us prior to implant but it unfortanely happens.  I'm very athletic and it was explained to me that with the stenosed area that was at one point a clot, compresses nearby nerves=nerve pain.  The device craming in a area that is already tight and strong can press on the brachial plexus area. They aren't sure where exactly the brachial plexus is being compressed but it appears the culprit is the stenosed/clotted area.  I did build collaterals pretty quickly but with upper body activity, I notice the most irritation.  I now limit how much upper body activiy I do. My career doesn't help because 70% of our job is upper body.  I've spoken to several people with TOS. post implant and all are young and active.  Someone needs to figure out how to place these devices for us young active patients.  I consider myself lucky because some are far worse off than I am.  Some are disabled because of it and others have atrophy of the PM arm.  I'm hoping the higher area improves my symptoms but so far it's the same.  I was cutting a bunch of fruit and veggies today, just that repetitive motion caused a spasm in my PM arm.  So I have to be careful how much I use my upper body.  

Moving the device was strongly advised against by the Vascular surgeon. She said " it will happen on the other side."  No thank you! One side is enough.  She said "don't touch it!"  My EP said the same, he wasn't touching it unless it was absolutely necessary. His fear is different than the Vascular surgeon. He says I'm too young and we need places to place future devices. If we move it to the other side, we can't go back to the that side. You run out of options and you're too young for that. You will need a device a long time.  So moving was a last resort and thankfully I've managed to keep the pain/irritation under control.  

 

My lead impedances are normal for my lead type. I did ask my EP about this because my A lead is the 350 range and V lead 450 range. He said it is normal for my lead type to have impendance in this range. So good pick up.  

So your device doesn't have something called "rate regulation?"  Bummer.  I agree with the tech I would think a LRL of 70 you wouldn't feel much pause after ectopics etc. But it depends on where your HR is when it happens.  Let's say your HR is at 100bpm, The device will not allow you to fall below 70 bpm, Say you are cruising along at 100bpm and then drop down from a pause it won't pace you until you fall below 70bpm, but that is a 30bpm difference in change.  You are going to feel that difference.  I know I did. I tried 3% and didn't notice much difference from 6 to 3%, so I left it at 6%.  So I can see why you feel the pause still because it's not just about keeping you above 70bpm, but where you start and fall to 70bpm.  I hope that makes sense.  Techs' don't look at it that way. Another example, say you are at 85bpm and suddenly go to 70bpm, you probably won't feel it as much because it's a 15bpm change vs 30 bpm change.  I don't think they will fully understand how it feels to us.  They see numbers, we feel numbers. :). I remember doing my treadmill session and we kept seeing my HR drop approximately 50-60bpm, sometimes more.  It would be nice if your next device has this feature.  So I'm not sure if raising to 75bpm will make much difference unless you notice more ectopics at a certain HR range and it would be beneficial.  

I recently wore a zio patch for symptoms.  It showed I had accelerated junctional rhythm. The solution is to raise my base from 55 to 70bpm to outpace it. My EP strongly advised against it for me. He didn't give an explanation but said "I strongly recommend leaving your LRL where it is."  Not sure if it's because I have a history of being sensitive to pacing or there is another reason.  It seems my accelerated junctional rhythm has only happened twice since my new device.  So hopefully that fixed it. :). 

As usual, thank you for your help PacedNRunning

by Gemita - 2023-08-25 05:05:42

Hello PacedNRunning, yes, I do know what you mean about the heart rate dropping suddenly and causing symptoms.  What I didn’t realise is that ectopic beats can come in fast too.  I always thought they were only slow and pausing beats, but when they cluster and get going, they can cause symptoms apparently and trigger other tachy arrhythmias, like Atrial Fibrillation during PACs and Non Sustained Ventricular Tachycardia during PVCs.

I was told my Atrial Preference Pacing algorithm currently in use, will suppress atrial premature beat activity by making sure I am pacing the atrium 100% of time, but that it has its own limitation.  It can only pace to a maximum of 130 bpm (my Upper Rate Limit) and they cannot safely raise this limit as it may trigger other atrial tachy arrhythmias by pacing too rapidly.  Atrial Preference Pacing may not therefore be able to suppress all my premature atrial contractions when they are coming in at too high a rate.  

Yes Rate Smoothing or a similar algorithm is something I will ask for well before my device needs replacing.  Even if there is a lot of skepticism that a pacemaker can help with arrhythmias, anti tachycardia pacing, overdrive pacing and other helpful algorithms all have their part to play.  I have already had clear benefits from being paced and I am more than happy to experiment further.  That is the only way technology will ever advance.  

Of course there is the small matter of my Mode Switch function being triggered during high atrial rates, quickly bringing down my heart rate too when I reach my limit of 171 bpm, so there is a lot potentially going on to cause symptoms.

I was concerned to hear about your accelerated junctional rhythm and hope it will settle without any intervention if that is what your EP recommends.  I know it can occur during periods of bradycardia or complete heart block hence the raising of the lower rate limit might help. Have you had checks for electrolytes, infection, inflammation?  Are you on any meds that could be causing heart rate/rhythm changes?  We are clearly both sensitive to pacing and to heart rate/rhythm changes, aren't we.  I think as you are so active it will be more difficult to get those settings adjusted to keep up with you but I have confidence that you will succeed.  

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