Replacement due sooner than expected

Hi everyone! I got my first PM implant Nov 2010 when I was 16 years old. I just went to visit my electrophysiologst at the end of April and was told I have about 2 months left until the battery goes into the "reserve mode". (I forget the actual term for it)

Well, 2 months turned into 8 days. My pacemaker went into the reserve mode 8 days after seeing my doctor. I had no idea but I just knew I felt horrible. Heart palpitations, hiccups, dizziness, shortness of breath. The whole 9 yards. I found out today that it went into the reserve mode after living like this for 3 days. (I know its meant to happen but I do not like this feeling) They are moving up my replacement surgery within the next 2-3 days. 
 

Any advice for how to cope with these symptoms until surgery? Any advice before/during/after replacement surgery? I feel so disgusting and laying still exacerbates the heart palpitations and the uneasy feeling. 
 

TIA 😊


8 Comments

Coping

by Julros - 2021-05-11 10:23:12

Ugh, what you are going through sounds awful. You really have no choice though, about minimizing activity due to a low heart rate. But, you will get relief soon in the form of a new, and improved box!

As for coping, many of us practice mindfullness and breathing excercises. This may be a great time to read an interesting book, or binge on Netflix. Are you a movie fan? Lots of things are availabe on line for a minimal cost. 

Afterwards, give yourself time to heal, follow instructions about activity, and you'll be feeling better in no time. 

Imminent replacement

by AgentX86 - 2021-05-11 13:40:31

I'm surprised that with even two months to go on full power that they didn't schedule you for replacement right away.  It's not even like the insurance company is going to save any money.

I'm not sure what to tell you about mitigating the symptoms except take a nap for the next two or three days.  I can only imagine how crappy this must make you feel.  Hopefully you'll be back to normal shortly after the replacement.

 

it can happen

by Tracey_E - 2021-05-12 09:33:09

As you learned the hard way, those numbers are just an estimate. Take it easy until your replacement. The pacer is no longer raising your rate on exertion, so don't try to exert. Good luck!!!! Replacements are super easy. 

Reserve Pacemaker Mode

by Marybird - 2021-05-12 18:56:04

My daughter went through the same thing, when her pacemaker went into the reserve, or end of service mode without warning. She had the pacemaker put in January 2012, so it did last for about 8.5 yrs. She was expecting some sort of audible alarm before her pacemaker went into the end of service mode, but she didn't get one. She woke up one morning feeling bad and realized her pacemaker was pacing at a steady 65 BPM, no rate response, no other programmed settings working.

She had to wait a week to get her new generator, had to take that week off work as she felt tired and short of breath when she did much. I think basically taking it easy is about all one can do with a pacemaker on its last legs.

As I understand it once the pacemaker goes into the end of service mode it's three months till it stops working. Thank goodness you don't have to wait more than a few days. You will be amazed at how much better you feel with your new generator. 

New and Improved

by SamDam118 - 2021-05-13 14:53:35

Hi everyone! I Appreciate everyone who took the time to comment advice and their personal stories. It made me feel so much better! Luckily I did get my replacement yesterday. It was a 13 hour adventure from entering the hospital to when I left. I feel better in regards to no more symptoms and feeling crappy! But the pain of the PM site is excruciating. My PM is under the muscle so I'm going to be sore for a little while. Like you all said, just going to rest and take it easy!!

Thank you again ❤️

number five

by dwelch - 2021-05-15 01:03:17

I am on my fifth device and four was removed early, five I still have. Either all of the first three or two of them went into whatever mode.  The last one two pacers ago, I definitely felt.  Couldnt take the stairs at work had to take the elevator (two story building).  Stuff like that.  They wanted me to wait a few weeks, I think I bugged them a few times and they moved it up.  But it was probably a week or more.

My first replacement was in the early 90s the doc said the device kept going into this mode he would program it normally it would fall back (understand I was only getting interrogated once every 6 months, no phone checks).  He said "so what are you doing next week" umm, "you are getting a new pacemaker...

My experience is you are locked at a fixed rate takes less power to do that so they lock you at say 64 BPM.  That means it doesnt increase when you get up and do stuff.  If that is below what you are used to then just sitting is going to be lets say fun.

Put your fingers on your wrist, count a full minute no cheating.  Is it still working?  yes it is still working, you can make it thorugh the minute, the hour, the day the week and then you get a new one, cant sleep for a week or two, wash your hair with one hand, all that fun stuff.

11 years give or take is a good run for that last device, hopefully you will be like that more often.  Mine have been closer to 7 than 10 years.  I started at 19 years old.  I have pacers for 34 years.  I have leads older than you...grin...

I was 26, getting damn tired of having to go in every 6 months instead of a year (doc was about an hour away from where I lived, next big town over), guess what you are doing next week...It happens.   

The battery estimates are garbage, when it gets to weeks it is time, before that ignore whatever they tell you and move on with your day/year.  Now insurance unfortunately is talking about or starting to push forcing us into this mode before they replace, I figure someone got a raise for extending pacers weeks or months.  Mathmatically it doesnt work out.  Even with you and me with a lifetime of pacers they dont save a whole 10 years by delaying replacement by a few months per device, there is zero savings.  But the first year or two of a policy like that across all of their patients, sure they save quite a bit of money, someone gets a bonus, then they have to find some other way to save a few bucks for a few months.  While we get spend weeks sucking wind every device.   I got them back for many of us though.  Number four we replaced at about 3.5 years or so, supposed to be like a 14 year pacer.  So...sorry this is your first replacement experience, and it starting off uncomfortably you will very soon have your new device and be past the recovery and have another 10 years or so of peace...You now know what it feels like, and if at any time this happens you know to call them or push the button on the take home box.  And hopefully they wont make you wait more than a few days to a week the next replecment. 

I do very much wish there were a way to have techs and nurses and docs feel what we feel like when they jack with our heart when they push a button on the interrogation machine doing a test, or how it feels to have to sit breathless and exhausted waiting for surgery.

Based on when you wrote this and when I wrote this I hope you had it yesterday or today.

Like Tracey_E and myself and several others, you are going to be an old pro at this.  Lifetime of pacers, always the youngest paitent (even now)...

Low, low Pacer Batteries

by Marybird - 2021-05-16 13:37:20

Well, we were told that when pacemakers go into their reserve modes, they remain there for 3 months before they're done, kaput. 

The problem is, a bit like a gas tank indicator in a car on 'E", it's hard to tell the time left before it's done because you may not know how long it's been running on the fumes. My daughter spent a week with her pacer in the reserve mode, but fortunately, when she woke up with it one morning they got her to the office for a device check ASAP- she had discovered a couple weeks before that her Medtronic Remote monitor ( manual) was not working. Her pacer generator replacement was scheduled for five days after that.

She said the pacer techs commented that it was lucky her pacer had enough battery left to respond to the interrogation, and they were able to see exactly when it had gone into the reserve mode. They commented that at some point in reserve mode, the pacemaker will not respond to interrogation, saving the little remaining battery power for pacing at the fixed rate. Then it's really hard to determine just where along that "E" ( or running on fumes) spectrum it is. Which would be another reason why replacing a generator would be an urgent matter.

ice

by Tracey_E - 2021-05-17 11:43:32

Glad it went well! Ice liberally, it will help with pain and swelling. 

You know you're wired when...

You have a $50,000 chest.

Member Quotes

My eight year old son had a pacemaker since he was 6 months old. He does very well, plays soccer, baseball, and rides his bike. I am so glad he is not ashamed of his pacemaker. He will proudly show his "battery" to anyone.