Scared, battery is low

I am getting scared.  I have a St Jude dual chamber ICD, pacing artial 90% ventricle 20%.  SSS, right atrium defect.   I live in the US.

This is my second, soon to be 3rd pace maker.  I was implanted in 2011 with this device... I have been told I had 2 years, 6 months later, 1 year,  2 months later 10 months before I run out of battery.  It is dropping quickly.  Mathematically I am at less than 9% battery life.   They (Kaiser Insurance) don't want to swap out until it is closer to the end, like when I start beeping for low battery.   The doctor's are good with that too, but they are employed by Kaiser as well.

If your cell phone was at 9% you plug it in... ?right?   Why would they make me wait.   I am PM dependent and they are just like, nope, not close enough...    Am I wrong to be so scared???

Also, I was 36 when implanted... I keep reading PM patients usually live only 20 years after first implant.   I have approximately 15% cardiomeglia.  I waited too long to get implanted and my heart muscles grew.   My valves are great...  I am 55, not ready to die...   Have any of you gone over 20 years??   

Sorry so long... Any feedback will help..

Thank you,  Lori


6 Comments

it is fine

by dwelch - 2021-11-24 22:55:48

I know I cannot completely or perhaps at all make you more comfortable about this.   Now that estimate is just an estimate.  Second that is to a replacement point, there are still months of life after that point to get it replaced, you have tons of time.

Yes insurance companies are starting to insist that we have to wait until it gets closer, to when that esimate runs out.   But think of it as having a reserve tank, or a power bank for your phone it may go close to zero but you have a spare battery that has plenty of charge to get your phone to the charger.

I am on my fifth device.  Started at age 19.  34 years with pacemakers.  I have leads that are 34 years old.  The only thing we talk about aging out is my left shoulder, if I get another 30 years we might wear out that side and have to move over to the other which will probably mean they simply turn one off and put another one in on the other side, two pacers one working a ton of leads.  That would make for a very fun xray.  I have had xray techs freak out when they saw wires inside me.   imagine the sight...

It is all good.  If you have one of those take home boxes, are they doing checkups every month or two to test the battery?   If not then call them, and tell them you want that.  That also depends on the insurance.   My first device or two it was nothing, you get it you see the doc once a year.   My first replacement he fiddled with my first device one day.   Hmmm.  so what are you doing next week?   You are getting a new pacer.   Wasnt until the third or so that I had a doc with the phone box and the magnet that you laid the phone on.  And one of the docs did increase the frequency of the checkups once the device got into the home stretch from the estimate.   The current doc increases my checks to once a month as it gets close, but now I have one of those new boxes that talks to the device.

I hope this helps, nothing you have said has indicated that there is any end in sight, just yet another device, a few weeks that suck while you recover, then several years of happiness before a few weeks that suck again...

 

battery running low

by islandgirl - 2021-11-25 00:55:15

I am also pm dependent with an ICD, paced 100% in both RA (SSS) and the last year, RV.  I have been bouncing from 6 months to 11 months, and now even less when I sent a carelink (I have Medtronic) transmission.  They will soon have me come in 1x/month.  The EP told me last week that they can't replace until it gets to EOL(?) mode.....and they will do it immediately.  It is based on voltage available, so with the ICD it is programmed to ensure replacement is done with the ICD able to function properly.  You still have time when it gets to the mode that conserves battery.

Thank you,

by stillshocked - 2021-11-25 14:11:10

Wow, 34 years,  while I am sad that you have had it so long, it's good to know you can!!

You both make great points and make me feel much better.   I really appreciate your replying to me.

Lori

Unfortunately that’s they way they do it

by PacedNRunning - 2021-11-25 18:41:24

Unfortunately that's the way they do replacements. I'm with you. Why wait to the end. But when it hits replacement it still has a good amount of power left. Some have hit replacement and still pace for 2 years after that. They've done this many times and know your safe to wait until you get the green light. I dread that day. Even though you say your dependent sounds like most of your pacing is up top so your HR will go above the lower limit. You won't be stuck at it like me. I pace 100% in the bottom chamber and once it hits the replacement my HR will not go above the low limit of 65! It's going to suck. Pacing percent does not equal dependency and since a majority of your pacing is up top, you are probably not "dependent". Dependent is driven by the bottom lead and your own HR would have be under 30bpm without the pacemaker. Even though I pace 100% I'm not truly dependent because I have a slow HR 30, underneath. Not ideal to be without one but there is a difference in dependency. Another reason they could be waiting until they get the replacement indicator. Hang in there. In the meantime know this is how it works and not a Kaiser thing. 

Our life expectancy

by PacedNRunning - 2021-11-25 18:42:28

Our life expectancy is no different than anyone without a pacemaker. Having a pacemaker doesn't dictate your life expectancy, it's your overall Health and lifestyle that determines that. 

Our life expectancy

by AgentX86 - 2021-11-25 22:01:17

Right, pacemakers extend life they don't limit longevity.  The statistics may say that the mean longevity of a pacemaker recipient is 10 years (or whatever) but that takes into account those who have received a pacemaker as a last-ditch effort at saving their life.  A month avereged with 20 years, is...  Also note the age of the average pacemaker recipient.

Statistics are meaningless without context (if then).

You know you're wired when...

Your life has spark.

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Since I got my pacemaker, I don't pass out anymore! That's a blessing in itself.