7 mos to ERI

I can't believe almost 5 years ago I came here looking for a way to "cure" my heart block! I'm here to say. Not likely to happen! I have 7 months of battery left before replacement. It seems to be going fast-slow fast. December I had 11 mos. Jan 10 mos and Feb 7 mos. In October I had one year! I have monthly transmissions so I'm able to keep up with time left. They keep saying they will replace it before ERI. So my question is how close to ERI will it get replaced? 3 mos? 2 mos? Luckily with Boston Scientific no settings change at ERI for me. But EOL, I'm screwed. I know it will still pace but VVI 50, they showed me and ugh! Feels miserable! They promised I wont even get to ERI. But of course I'm worried it will suddenly got to EOL 

Never realized how stressful the last year can be. Not knowing when is nerve wracking. Just curious about the replacement time and if anyone's seems to tick away slowly. I was hoping to get a solid year but was told not likely. 


14 Comments

It sounds as though you have got a good team behind you

by Gemita - 2023-02-09 05:23:05

Hello PacedNRunning, it is unusual to see you posting asking for advice since I have got so used to seeing you commenting on members’ posts and giving good advice.  

Like you I haven’t yet had to face a battery change so it is difficult for me to reassure you that all will be well by just keeping a close eye on you and frequently checking your battery and device data, and then carrying out a battery change well BEFORE you actually experience troublesome symptoms.

I am not totally pacemaker dependent like you, but I know that without optimal pacing, I will likely experience similar symptoms to those I experienced prior to my pacemaker, as I believe certain functions may stop if my battery falls too low.  I note though that your Boston Scientific (BS) Settings will not change at ERI stage (elective replacement indicator period for battery depletion at around 6 months remaining) but will only change at EOL (end of battery life at around 3 months remaining), so that makes monitoring of any symptoms just prior to and during ERI even more important for you. 

As far as I know my battery (Medtronic) will only be replaced during ERI.  I wasn't aware that they might change a battery before this stage is reached but if you have been told they will do this for you, then that will be even better for peace of mind.  

I see your block has progressed since you started pacing so it will be difficult for you to recognise all the symptoms you might experience as you battery slowly depletes.  Any change in symptoms should be reported quickly and you should push for a battery change, insurance permitting, at that stage.

I see one member here with a BS did in fact slide into EOL without prior warning and never showed ERI, but this is extremely rare.  I can understand your genuine concerns though until you receive your new device.  However, I have confidence that you will know the signs to watch out for and will keep up the pressure on your medical team to move quickly when needed. 

I wish you well PacedNRunning and hope that you will have a trouble free device change very soon.  Please keep us updated.  Do you know what device/upgrade you will be getting?

UK Practice

by Penguin - 2023-02-09 07:55:55

Hi PacedNRunning, 

As I understand it, in the UK we are listed for device replacement when the time remaining to ERI reaches 12 months. We (ideally) get put on a more frequent pacing check schedule when time to ERI is below 12 months. This will very likely be a different process in the US with insurers involved in the decision and I can't comment on that. 

The reason for listing at 12 months in the UK is, as you describe, that the remaining battery life can be unpredictable and progression isn't necessarily linear as you would expect. E.g. it can jump around and battery usage for 1 month may not correlate with battery usage for the next month. I can't explain why this happens but someone more knowledgeable may be able to. 

It may be worth checking with your Health Regulator (in the UK we have the MHRA). They publish safety advisories relative to medical devices, drugs etc. and it's worth checking these as there are notices / advisories re:pacemakers which are known to reach ERI due to premature battery depletion issues. I haven't seen any for Boston Scientific - but there are quite a lot of advisories issued and I haven't specifically checked.

https://www.gov.uk/drug-device-alerts?alert_type%5B%5D=device-safety-information&medical_specialism%5B%5D=cardiology

Re: the stress involved.  I'm sure you've thought of this, but perhaps take all of the necessary decisions now re: device that you want implanted and settings to be carried over / or not and ensure that your team are aware of precisely what you want. Flush out what they can / can't provide and then, at least, you have a concrete plan should the battery reach ERI more quickly than expected.  This may provide a little more reassurance.

I hope this helps a little.

 

been there, done that

by Tracey_E - 2023-02-09 11:40:12

I'm on #5. I've been ERI but never EOL. We've got roughly 3 months from the time it goes ERI until EOL so plenty of time to make plans. Most insurance won't cover before ERI, some make us wait until EOL. 

I've had those last few months stretch out for almost a year. I've had it go from 6-9 months left to ERI 2 months later. Ya just never can tell! They usually switch to monthly checks for the last year. Even if they don't catch it before it switches to ERI, you will have plenty of time to plan. 

Are your leads good? Wondering why your battery life was so short. If there's an issue with the leads shortening the life, it's best to deal with it now. 

Replacements are super easy! It's all scar tissue this time. I've left for vacation less than a week later twice. 

Good luck!

Thanks!

by PacedNRunning - 2023-02-09 14:43:18

Thank you Gemita! Yes. I have no idea about device replacements. 😆. It's new and I don't find many talk much about it. Most just say it's time! But didn't realize it's a wind down to surgery day! It's a bummer medtronic switches to ERI and VVI at the same time. Boston only takes away rate response so it goes from DDDR to DDD. I don't use RR so I'm good there. I will get the exact same device accolade. They want me to go for the EL versions but it's much bigger and I already have nerve issues. So don't want to make it worse and just leave it the same size. 
 

penguin. Apparently, I've asked about insurance approval and was told it's fine and won't be a problem before ERI. I was told it's rare they make you wait until ERI. I'm still not convinced but they say so. It's nice to get feedback especially how it can flip back and forth. 
 

Tracey- that quick flip is my worry. I mean not a super worry but a worry. You just never. It was a relief to hear you went on vacation soon after replacement. Not sure why my battery went so fast 2020 I had 6 years. But mh pacing went up to full time at that time. So I'm guessing the 6 years was based on pacing before it increases. Leads are good. 

pacing percentage

by Tracey_E - 2023-02-09 17:32:10

Believe it or not, how much we pace has very little impact on how long the batteries last. Plenty of people who pace 100% have batteries that last 10+ years. It's the bells and whistles we use, the safety margins, the amount of juice it takes to get the heart to beat, placement and condition of the leads. 

The main restriction after replacements is staying out of the water for 30 days due to infection risk. Showering is ok but swimming is not. You should find the soreness is only a fraction of what it was the first time. 

The time I went ERI so quickly, we realized it at the end of Nov. The surgeon I was supposed to use did something that made me walk out of the office when I went for a pre-op consult so I was suddenly in ERI with no surgeon. I normally see a cardiologist and he referred me out for surgeries. (I see an ep now) I didn't want to do it during the holidays. I found someone new, met them and got scheduled and had the new one by the end of January.  RR turns off with the St Jude model I had, other than that it functioned normally. I went to the gym daily right up until surgery. 

In case you didn't know, if we are dependent they use either an external or temporary pacer for the few minutes between disconnecting the old and connecting the new. We are always safe. Temporary goes in through the groin, external is just big pads. I've always had the big pads. 

The first replacement is the most stressful. After that, you realize it's pretty easy. 

Tracey

by PacedNRunning - 2023-02-09 18:38:06

I have seen people pace 100% and last 10 years.  I don't have an EL battery. Just standard out of the box 8 years. We just noticed once my pacing increased the battery ticked down quickly. It should recalculate based on the new usage. I say it's from running. EPsays nope but do they really know? If say the PM can pace one billions beats over 10 years but since I'm so active and run I can have one billion heart beats in 6 years. I know! Doesn't work that way but in my brain it's the explanation that makes the most sense. I have low outputs/voltage 1.2v and 1.8v. I don't have rate response or any fancy sensors. Lead impedance is stable since implant 300-400's. I have had many interrogations to get my settings optimal. It's not on the recall list but it's suspected to be one of them. I just worry when it hits ERI My voltage has to be a minimum of 3.5v so it's going to zoom through the battery!  I'll be happy when this is done! The not knowing is the hardest part. I hadn't asked about the external pacemaker. I'll have to ask at my next visit. I do have a underlying heart beat. It's about 30-40 but it's there. So  I'm not truly dependent since my heart can still be even if it's super low. I'll definitely ask because they have said if you're dependent they will swap out before ERI. They just have never said il dependent. I know it can have different meanings. Some doctors consider >85% paced dependent. I Will ask.Thanks for all your help!

1st replacement

by Penguin - 2023-02-09 19:41:48

The first replacement is stressful but for reasons which differ depending on your situation and attitude to surgery.  I'm pretty terrified of operations like Gemita and the sudden realisation that another surgery was on it's way - out of the blue - was quite hard to get my head round when battery life nose-dived. 

In your position I wouldn't want to go any less than 2-3 months prior to ERI, particularly if your battery is disappearing fast and you are dependent. If you can push for that, I would do.

 

Replacement

by AgentX86 - 2023-02-09 22:00:19

As you know, the gas gauge isn't a very good measure of time left until right at the end.  I am surprised it's only been five years, though. 

I'm dependent and paced (100%) in both ventricles VVIR(V). I too have had my PM for five years and it still reports three years left (knock wood). Mine's been recalled, so I'll probably be getting a bit nervous about where you are now. They seem to be looking at it once a month, even now.

I see that they'l replace it before ERI.  That's good.

AgentX

by PacedNRunning - 2023-02-10 01:21:25

They aren't sure why my battery has gone so fast. You understand with being recalled. I'm like, might just all of sudden flip! Even my EP said last visit if it flips you'll know! It will keep you at 50. I'm like oh geez! I do pace 30-40% on the top lead and bottom 100%. I guess we will see how the next one goes. It will be the exact same one. 

Had mine replaced last October

by LondonAndy - 2023-02-11 18:40:11

I'm 100% dependent too, and had my first replacement last October. The previous device lasted about 8 years, and has been replaced with the current model of the same pacemaker. 

I don't have remote monitoring, so as Penguin said they increased the frequency of checking from annual to quarterly. The forecast end of life was March this year, so it was replaced about 6 months before then.

Thanks LondonAndy and Penguin

by PacedNRunning - 2023-02-12 01:13:46

Appreciate the feedback! 
LondonAndy- so 6 mos to ERI they replaced yours. That great to hear. I'll know on 3/1 how much time is remaining. Monthly remote checks for now. 
 

Penguin- I agree! 2-3 mos prior to ERI sounds smart. 
 

AngrySparrow- Good to hear surgery is easier. My first one was a breeze so hoping this one will be too. Same doctor and same device. 

underlying rate

by Tracey_E - 2023-02-12 10:14:50

Dependent is just a word. It has different definitions depending who you ask. What they will look at isn't how much you pace but your underlying rate. They've always checked mine when I go for my last check before replacement. It's been anywhere from 60 to 20. Because my underlying rate can get so low, they don't check it during regular checks, only when they have a reason to know. 

The only issue I've ever had is getting the goo off from the giant pads. 

a couple of comments

by dwelch - 2023-02-15 16:04:11

They no doubt as I already know, choose the device in part by usage, an expected 100% paced complete heart block patient with two leads is going to get a different size battery than one with three leads or someone who is not 100% paced.

5 years seems short, but hey, it happens.  Maybe you were level 2 and your usage went up, that could/would explain it.  

I like your doc/office already.   Mine also checks monthly as we get into the home stretch. that is somewhat insurance dependent the first doc that I had that did that said "they" paid for it and they had their own phone center, used to be like today with the take home boxes, the box owner was who you called or at least some third party and the docs/insurance/you had to pay, with profit, as in health care levels of profit, for those checkups (no doubt one of the leading factors for the creation of these take home boxes) but that doc was doing monthly.

Now the usa health industry, as you would expect, is ending the early replacement, hey its my daughters wedding can we do it now instead of waiting a few months or more...So if you live here, the expectation is you go into ERI.  You have plenty of time from ERI to end of life.  And a reason for additional monitoring.

ERI is not that bad of a deal.  I am also on device number five.  At least two if not three went into ERI and no doubt the insurance will take number five in as well.   As I age I do feel it more, you are basically fixed at 65bpm or some number like that so climb some stairs or carry a box and the breathing gets heavy and you need a break every so many steps.  It does create anxiety esp when they tell you the next avaiable O.R. is three weeks away.  It is just part of the experience, the replacment experience.

If all goes well, they dont break a lead like they did on my first one, then it is in and out the same day, few hours you are going home.   the shoulder stuff is like number one, but you have now experienced it and in your case it is more fresh at 5 years that the folks that make 10+.  you are not going to pull a lead out or if you do its on the pacer end, but still not going to happen.   Perhaps like the folks on this question already with multiple devices, maybe you will be driving again two or three days later, maybe you want to wait for device number three or four before you do that...

My first two were 7 years which was short, next was 10+.  Number four was a wee baby as we took it out after about three or four years to put in a biventrical, it did not get a full life.  Number five a biventrical was of course showing horrible numbers the first few visits but I think it has been reporting five years to go for the last five years...number four was a wee tiny thing too physically and expected 13-14 years, number five is biventrical and at least twice the size of number four.  but small in comparison to number one from the 1990s.

You will be a pro at this like the rest of us with heart block starting this journey early.

You now know the recovery experience, you can plan for button down shirts and stuff, do spring cleaning now.  Be careful not to be to relaxed about it I did get stiff shoulder on one of them because I thought I was a pro and it was too easy.  That was my worst recovery.

Depending on you and your fitness and health and such, you may or may not feel it when it goes into the next mode.  Or perhaps only when carryhing things up stairs or whatever.   Do the monthly tests, if you are getting anxious, check your pulse, full minute against a clock no cheating with half or fractions of a minute.  (or use one of the finger led pulse-ox devices).

 

You have more than enough time to get the surgery sceduled and get the device replaced, not that that helps your anxiety, but you do.

 

Welcome to the club of folks with more than one.  Extremely unlikely but does not hurt to ask. Can I have the old one?  I have my first three.

 

 

 

Dwelch

by PacedNRunning - 2023-02-21 04:00:50

Hi! So at implant I had intermittent exercise induced 2:1-3:1 block. High grade AV block. I was predicted to barely pace. Welp after 2 years 100% paced. I started pacing more about 18 mos post implant. So smaller battery and I think my doctor likes smaller battery to hide better. Funny because now he says I knew you would end up in complete heart block and need 100% pacing. That was surprising to hear. Maybe he thought that as my block became more frequent. Thank goodness BOSTON Scientific doesn't dial me down to 50 until I hit EOL. ERI everything stays the same for me. Only that will change is my daily threshold test will end. Wahoo! Hate those tests. 
My doctor has said he will replace before ERI and it's rare they wait until ERI. So we shall see. I lost 3 mos in one month so I may not even get a full 3 mos at ERI so we have to be careful. They showed me what it feels like and yikes! No thank you! I don't think I can function like that. I will ask to keep my device. That will be cool if I can. Next week if my next remote transmission. I'm curious what it will say. Hopefully 6 mos because June would be a preferred time to replace this device for my schedule 😆 

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