malfunctions in device

I have had my pacemaker for 2 years, unfortunately they are still tweaking it these past 2 years. I goto Mayo clinic and they say I am unique...never seen a patient have my heart issues. I am 100% pacemaker dependent, was in a car accident that started the electrical problems. Had AV Node reentry, flutter, atrial tachycardia among other electrical problems. My PVARP is at 175 and my AV Delay set at 100, the delay has to be this low as my PVARP can not go any lower as my pacemaker can not do that. My concern is this past month my home monitoring was not transmitting. They didn't realize this till 23 days after it quit as that is when they get an alert...don't understand why it's so long before Biotronik sends an alert. Anyway, I go into my local cardio to get the home monitoring reset in my device only to find that my device is not recording episodes, just alerting that they are happening. I have spoke with reps and asked my doctor at Mayo if he would change out for a new pacemaker. My husband and I are worried as what is the next thing that will quit working on it. After resetting the home monitor, it did transmit the following night, however the recording problem is within the device and can not be turned on or off so that is now our problem. There is no way of knowing what is going on now. Could anyone share their mechanical failures regarding the Biotronik EVA DR-T as there always seems to be something they have to change and possibly could this be malfunctions as well? TIA for any thoughts as I would like to have it changed to a different pacemaker that can actually work for what I need. If they would replace it, I'm 46 years old female and through reading other posts see that my leads should be taken out since Im young and will be needing several leads by the time Im old...hopefully. I am using up about 3 years life every year so far that I have had the pacemaker so actually my 10 year pacemaker will only last me 5-6 years at the rate it is going. Should I demand for the leads to be taken out and new ones in. There is also an issue that my right atrial lead is not in the exact right spot anyway. Do I push to have them switched too. Risks with this? Will insurance be a problem if they switch out the pacemaker and leads earlier? Thanks for any responses.

1 Comments

switches

by Tracey_E - 2015-01-08 08:01:18

What you are describing to me sounds more like a complicated case that they're having trouble managing than equipment malfunction. I'll break my reply into leads and pm, because they're two different issues. Leads are interchangeable between manufacturers, so even if you switched to another device you could keep the leads.

PACEMAKER: it sounds like they're having trouble getting your settings right. That's not the device malfunctioning, it's a matter of fine tuning what's there. If you are a rare case, they are probably making it up as they go along. It doesn't get any better than Mayo, all they can do is give it their best guess, try it out, then try something else if it doesn't work. It once took a full year to get my settings right. I had several different things going on, we'd fix one and another would act up. It's frustrating, but they eventually found a combination that worked.

I don't know enough about the nuances to know if another model would do a better job, but the one you have has an excellent reputation. Insurance is not going to want to switch out a device that is working and has a lot of battery life left. Not saying it's impossible, but it's going to be an uphill battle.

LEADS: If the lead was in a bad spot, your window to move it is about a year. After that is a much more specialized surgery. Personally, unless it is unbearable I would leave it alone until it wears out. I'm a few years older than you (48) but have been paced since 1994. I have one original lead still working, the other was replaced when I got my last battery. There was room so we left the other one in there, disconnected and capped it off, then added the new one. I plan to keep these leads as long as I possibly can, that's why I chose to add the new one rather than extract. I know at some point I'll have to extract and start over, but if I can wait long enough, maybe I'll only have to do that once in my lifetime.

I wouldn't worry about the box that calls in. Many of us have never had one. It's a nice feature, but it's not at all necessary.

Capturing events should be a setting. My guess is it was turned off by accident, not that it was turned on and didn't work.



You know you're wired when...

Your pacemaker receives radio frequencies.

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In fact after the final "tweaks" of my pacemaker programming at the one year check up it is working so well that I forget I have it.