100 % Pacemaker Dependent

  • by J B
  • 2019-07-05 10:18:53
  • Coping
  • 285 views
  • 5 comments

In early Apirl I had my pacemaker installed.  Then 2 months later I found out that I was going to have to have an AV Node Ablation, after which my pacemaker would then be doing 100% of my heart's work. I had the procedure 2 1/2 weeks ago and am now 100% dependent.

I am trying to find information on what happens when my pacemaker quits (battery dies).  Will there be enough time to get a new battery/pacemaker or when this battery dies is that the end of me?  This probably sounds like a ridiculous question, but everytime I asked it I seem to get very vague, unspecific answers.  Is there anyone who can answer my question in clear and concise terms?

Thank you

J B


5 Comments

Vague, unspecific, answers?

by AgentX86 - 2019-07-05 11:06:57

On the first order, it's a pretty simple question and a very simple answer.  Under normal circumstances (read: 99.99% of the time) you'll know months in advance of any pacemaker replacement.  Your PM tech will be tracking your battery usage at every interrogation and will likely tell you, without asking, how much time you have left on the battery.  This is only an estimate but the closer you get to replacement, the better this estimation gets.  Since you're dependent, my assumption is that they won't make you wait until it's completely dead.  You'll have plenty of time to schedule the replacement.

That's the normal scenario.  It's quite rare but batteries and pacemakers do faill unexpectadly.  Usually there is some warning but everything made by man has some chance of failing catastrophically.  Most people have backup pacemakers that will fill in when the primary faile but at a (often much) slower rate.  These "ectopic" sources are normally hidden because they're slower than the normal beat, so get overridden by the normal beat.  However, if the normal beat stops, these are free to show themselves.

The short answer is that normally you have months to plan for a replacement pacemaker but if a catastrophic failure occurs, your heart will probably not stop but it may slow enough that you pass out.

Quick response appreciated

by J B - 2019-07-05 20:16:18

Thank you AgentX86

Your concise answer to my concern has been very helpful.  In fact, it has given me peace of mind that was desperately needed.  I really feel now that there will be plenty of time for a new battery when needed.  You have been very kind with your quick response.

100% PM Dep

by PK1960 - 2019-07-07 14:22:31

Hello, I am 100% dep on my defibrillator, I have had some events and have yet had a “normal battery replacement” and I’m currently on my forth generator since 2004. I had one that malfunctioned, and even with that, I had warning and ample time to get help and replacement, Getting accustomed to the fact if it stops you stop is a bit overwhelming at first, but I let my thankfulness of the technology that allows me to have a decent life win over my fears. (Most of the time). I hope this helps, lots can and does go wrong but the technology truly is pretty amazing and the safeguards are in place! 

normal

by dwelch - 2019-07-07 22:09:42

It is normal to be concerned about this.  Its not something you should worry about.  and I know that doesnt help.

I am on device number 5, number 4 we took out early so that is 3 devices that made it to term.  Not my first rodeo.

There are a couple of ways they can monitor.  It is a magnet test which I assume is rarely used these days.  I still have my box, but they dont schedule the calls anymore.  There are the annual visits the current devices and devices for a while now plus software on the laptop thing can estimate battery life.  It is a crappy estimate, dont get worked up if a new device that is supposed to be a 10 year devices shows 5 years.  Let it go, crappy accuracy until it gets closer to the end.  (the magnet test is similar when the magnet is detected the pacer forces your heart to a specific rate, with a simple ekg that they can send over the phone the rate tells them battery life from a chart for that device)

For most of the 30 years that I have had devices they have not had these take home boxes.  I didnt get phone checks until my second doctor somewhere during device number two.  First doc would bring me in every year then as we got close (relative term) based on battery test, would start bringing me in every 6 months.  Second doc, device two and start of 3, the magnet test take home box.  annual visits with phone checks in between, as the device gets closer the in office visits every 6 months and phone checks in between. Note that for device 3 that home stretch was 3 years of 6 month visits.  My current doc end of device 3, device 4 and the current device.  6 months visits with phone checks in between and as we got even closer phone checks every month.  The take home boxes can check the health of the device/battery as often as daily.  if not then when you initiate an interrogation or they wish you to initiate an interrogation.

We are told that the device will go into a safety mode or some other term, thats what I call it.  it will force your rate to be 65 or some rate like that.  Two of mine went to that level, and from what my doc says insurance these days wants to save some millipennies and wants to push all devices to this mode before replacment rather than based on battery measurement find a convenient time for us and them to have it (got a wedding coming, can we not do it month X can we do it earlier?).  You may/should know when you are in this mode.  Climbing stairs, other things that would normally involve a faster rate your heart is locked at that rate, so you start breathing harder you run out of steam pretty quick. you know something is going on and you call the doc or they might even call you if the stay at home box tells them first.

We are told you have months, plenty of time to schedule and have the replacement, I would agree with that understanding.

For insurance cost reasons we have been told by some folks on this forum in non USA countries (perhaps this happens in parts of the usa as well and I assume it will become more common) that you dont get office visitis at all unless the take home box indicates a reason to.

As mentioned by others above it is possible for something to go wrong with the device, cant rule that out, it is what it is.  the device is and has been keeping you alive.  I considere this borrowed time and appreciate it rather than worry about it.  I hope that helps rather than hurts.  They typically do a test during the visit where the turn it off or set it to a really low number to see if your body takes over pacing.  You can ask them about that.  If your doc cannot answer the simple question of it goes into a mode, it fixes you at a rate, you should feel it.  The take home box will tell us.  We will start visits more often when the battery life expectancy gets below X.  Should be able to simply tell you these things, if not, find a new doc they havent a clue what they are doing.

Every office visit ask for your copy of the printout.  Its your body, your device, your data, they might try to make you sign some release, thats fine, whatever its your data.  That report will have the estimate, the battery voltage value, etc. And might be helpful on this site about other questions you might have.  Someone might ask what is your blah and you can maybe find that there.

Short answer, if you have one of the take home boxes, then that should be the first thing that tells you/them its time.  Second are office visits, and they should increase with years to go.  The device will go into a battery savings mode that locks your rate at something like 65 BPM even if you increase your activity it wont move, so you will feel it.  Any/all of these indicate it is time, you have months to take care of it before the battery is not able to pace you.  Historically docs will use the battery measurement and replace before it goes into battery savings mode.  with the way insurance companies are, combined with a box that can communicate with the device as often as every day, this may change to not permit the replacement until it goes into this mode.  But you very shortly after it goes into this mode, giving you the maximum amount of time.

Very common question/concern, but something you dont need to worry about.

 

 

 

changes

by Tracey_E - 2019-07-09 14:15:38

Like dwelch, I have been through multiple devices and am dependent. We get plenty of warning that it needs replacement and it goes through 2 modes (each lasting approximately 3 months) before it totally stops. I'm on #5 and have never gotten to the second mode which is where we feel a difference in how it paces. The first mode is more like the gas light on the car, still fully functional but we know we need to be thinking about finding a gas station. They increase my appointments to monthly when it gets close to the first mode switch, but my newest has a remote monitor so I would guess that will tell them now. Easy, peasy.

During the actual replacement, they will use an external or temporary pacer while they pop out the old one and connect the new one. They have the new one ready to go so it's just seconds between devices, but they still have a back up plan in place to keep us going. 

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I am just now 40 but have had these blackouts all my life. I am thrilled with the pacer and would do it all over again.