Pacemaker dependent and battery getting low

It's getting close! I am on my 5th pacemaker, the current one was placed on valentines day 2013. So it's made it 9 years, by far the longest I've had one last. I am pacemaker dependent with no underlying heart rate. I'm getting super nervous that my battery will run out soon. My last one went into EOL 7 days after they told me I had 6 months left. Felt horrible but they got it replaced quickly. This one has said I'm down to 6 months since November. For the last 2 months it's said 4 months and we've been checking every 2 weeks to get it to ERI to schedule surgery. It's been at 2.85 volts for 6 weeks now and thwy won't replace till its at 2.3 volts. I'm just afraid it will suddenly drop all at once and I'll get stuck feeling like I did before. Super frustrated today as I was suppos3d to have a telehealth with Dr. To discuss options and start planning and I ended up speaking with his PA who acted like I was over reacting and that I had several months left and that pacemakers don't just die randomly. Jerk. Anyways, just trying to keep myself from stressing as I have a  6 year old and summers starting and I have lots of plans thwy are being held up because I don't know when this is going to happen! I hate waiting and worrying. 


7 Comments

life on hold

by Tracey_E - 2022-04-26 15:42:43

Been there, done that! It's so frustrating when you just want to get it over with and move on. 

 Any idea why it dropped so quickly last time? When one of mine did that, it was a bad lead.  6 months really is the norm- 3 months at ERI and 3 at EOL.  It sounds like they're keeping a very close eye on it so that doesn't happen again. My guess is it's an insurance issue, they have to be to a certain point before they cover replacement. But that doesn't help you schedule your summer! I hope the numbers drop soon so you can schedule and enjoy your summer.

 

EOL mode

by LondonAndy - 2022-04-26 16:12:36

On the plus side, it sounds like you know what the End of Life mode for a pacemaker feels like, so at least you would spot the change and know to get in touch with your pacemaker team quickly. I too am 100% dependent, and the technician put mine briefly into EOL mode at my request on my first checkup, so that I would know. 

Batteries are indeed unpredictable as they approach their end of useful life, but that can mean they last longer than expected too, of course. I am not far behind you with my PM: in February, the test estimated it would last until May 2023. Their plan is for my next check to be in August with an expected operation in December. Clearly they know how "mission critical" your pacemaker is for you, so I can't imagine they would take any chances, but if you're worried keep pushing your concerns onto them.

Battery low

by AgentX86 - 2022-04-26 17:30:58

I'd be (more than) concerned too.  I'm also dependent with no underlying esape rhythm and I'd be kicking up more dirt than you indicate here. Screw the insurance company.  Doctors can appeal their descision and being *really* PM dependent should make a good case.  It's not like they're saving any money (unless you...).  They're just pushing the expense off the the next quarter.

Mine still has "four years" to go so I haven't crossed this bridge yet.  Mine has been recalled so Medtronic considers it an emergency when it gets to ERI. I'd be nervous there anyway. At EOL, I'd be putting hexes on all their families.

I know it doesn't help you but I'm with you!

I agree with AgentX86

by Good Dog - 2022-04-27 06:39:20

I have been through this myself. It does sound like an insurance issue and my Doc was able to get me in under the wire before it hit ERI two change-outs ago. I do not handle VVI (ventricle pacing only) well. It happened to me once unexpectedly on the last one and I was having a problem functioning. I felt like crap! So I asked my (new) Doc to get me in ahead of ERI and he said that he would. So we'll see. As AgentX86 said, Doc's can get exceptions made to the insurance reg's if they want to. As they always say, "the squeaky wheel gets the grease"! My Tech told me that some of her patients tolerate ERI without an issue and for others it is pretty intolerable. 

Pacemakers and other inconveniences

by Gotrhythm - 2022-04-27 12:13:13

Someone has said, "Live is what is happening when you had other plans."

My most recent pacemaker check estimated my pacemaker will enter ERI sometime in June.

I understand your frustration with PAs, NPs. They seem to be the new door keepers. Wonderful people who offer a real service. Unfortunately since they don't have the training that would allow them to see the big picture, they too often treat totally by the rules and the numbers.

The big picture of course is your life and the care of your child.

If you focus on what you don't want, i.e., the pacemaker to give out unexpectedly, you force underlings into arguing with you, i.e., telling you what the numbers say. The only way you can prove them wrong and win the argument that your fears are real is for the pacemaker to give out early creating an emergency.

Not really the outcome you were going for.

When you talk to them and doctors it wil be most useful for you to concentrate on telling them what you do want. You want the pacemaker replaced in a timely way, a way that works in your and your child's life. Ask for their help in getting you what you want.

Do it over and over, as many times as you need to. If they say they can't help you get what you want, ask who can.

Every action ever taken was taken because a human being decided to do it. What you want is for the person, who has the power, to decide that the best, right, good thing for all concerned, is to replace the pacemaker in a timely way.

 

I love that retort

by Good Dog - 2022-04-27 14:41:01

Gotrhythm,

I love your suggested response when someone tells you that there is nothing they can do and/or they can't help you. Well, then;

"give me someone that can" 

"tell me who can"

"Let me talk to someone that can"

Those are effective, but my first doc was just a really great guy. I never needed to use those retorts on him. Kind and considerate and you never had to ask him twice for anything. Unfortunately, he left the practice. I think that he and his wife both work for Medtronic now. I don't know if they make more money, but I am sure they enjoy not needing to deal with insurance companies anymore.

Dave

What Gotrhythm said

by RioTeresa - 2022-05-17 17:55:33

Hi Kinerby! You sound a lot like me. I'm also 100% dependent, on my 3rd pacer now and it's 11 1/2 years old (implanted 10/01/2010). My first PM went from 19 months battery life to EOL the next month! I was suddenly miserable and didn't understand why I was feeling so horribly weak and faint. I had to force my ex-husband to take me to hospital and that's when I was told my pacer was skipping 3 to 4 beats at a time, then racing, then skipping. It was a scary experience! And now with this one getting so old and I've been feeling so faint & light headed I have a hard time believing the report saying it still has 13 months battery life (battery impedence 4775!). But it also said I've been in constant atrial flutter since Sept last year. Anyway, I'm hopeful your doctor has been in touch with you by now and you're getting the care you deserve. Your AP sounds like a jerk! What Gotrhythm said make so much sense and should get you the help you deserve! Please do what they said - I'm going to!  I wish you ALL THE BEST!!!  Take care.

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