pacemaker/defibrillator lead/coil questions

Hello everyone. My name is Cory and I just found and joined this group yesterday. I really don't voice much in the way of my health, outside of my sweetheart wife; but, I am taking a shot now feeling like there might be someone out there who can give me some perspective, information and maybe even prepare me.

I can handle most anything if I know what I'm dealing with.

So, my pacemaker/defibrillator was placed in 2013. I just turned 48. I am due for a battery/device change within the next year or two. I have also had a Coarctation of my descending Aorta repaired on February 2019 . . . I don't usually get to uptight about anything heart related after having my Coarctation found and fixed so late in life. They found it, told us and schedulled that complicated surgery quick. This issue, not so much.

This last December I had a high urgency alarm go off; the French Ambulance tone. Between my Electrophysiologist and Medtroics they got it shut off and said it was nothing to worry about. They said it was a lead impedance issue . . . Which we had zero idea about and just went on about our merry way. 

Two days ago, the same alarm went off again. I went home, did the download and called the doctor. They called me back within an hour, or so, and schedulled an appointment for the next morning at 9:30. I went in, a lady I had never seen before came in and did my interrogation. It took quite a bit longer than it usually did and she was all business . . . and, wrote a ton of things on a form: which, I has never been done during a device visit. I'm not even sure she raised or lowered my heart rate as is usually done. She told me she turned off the alarm and a coil. It was the first time I had heard the coil term in over seven years of having the device. She took me to my Electrophysiologist's desk assistant. Nothing else was explained. The assistant said she was moving my June appointment to March 18 (two weeks from yesterday). She said my doctor will explain whatever options, what we need to do, or not do . . . if he thinks anything needs to be done . . .

The whole appointment was so weird, short and it seemed as if they were just allowed to give me the minimum information. It is just not anything I have come to be used to from them.

So, my question after all of this is, if they shut down the coil, (that I was told I don't really need anyway) does this alarm that has now gone off twice in just over two months, mean that one lead is bad? I feel like if everything was ok; and, all we needed to do was turn the HIGH URGENCY LEAD IMPEDANCE ALARM off, I wouldn't need to come back, three months early, just to hear it from my Electrophysiologist that everything is fine. Seems to me his someone from his staff calls to tell me he said everything is fine and nothing to worry about.

Am I making sense? I feel like just digitally threw up on everyone reading this. I'm not an alarmist. I just have the feeling there is more too this than they are leading on and researching everything, like folks like us do, I feel like I'm playing dodgeball with myself and can't decide who's winning . . .

Any input and/or direction is appreciated. I just want some honest feedback.

Many thanks,

Cory


5 Comments

PM/ICD questions

by Sisterwash65 - 2021-03-05 15:29:00

Cory, you are making perfect sense. Although I have a dual chamber PM and know zero about your technical questions, I don't think you're being unreasonable. In fact, in your place I'm not sure I would have left the doctors office without the technician being a lot more forthcoming !! 
Do you usually get a copy of your interrogation summary ? At my EP's office I always ask for one even though lots of the info found there might as well be Greek. Here's hoping it's nothing too serious and you get some answers soon. 

 

My thoughts

by Gemita - 2021-03-05 16:07:46

Hello Cory,

I hope I can give you some perspective and prepare you for what might lie ahead, but I am not confident that I can give you any information on what has happened because until you are seen by your EP we really won’t know. Yes it is the not knowing that can be so difficult to handle.  Once we know what we are dealing with, we can usually move forward and come to terms with whatever has occurred.  

My advice is try not to read too much between the lines, or to go to Google for answers when we don’t know what the question is or what we are potentially facing.  I know we all do this, but is it really helpful or wise?  We use up precious energy we could put to better use and it just fuels our fear further.

The fact that you are due for a battery/device change within the next year is good since whatever has happened will hopefully be corrected sooner rather than later now.

I am glad your Coarctation of the descending Aorta has been corrected and it seems to have gone fairly well?

Onto your lead impedance issue and the alarm warning.  I note it was last December when you first experienced your alarm going off.   I note that both your Electrophysiologist and Medtronic technician at the time successfully stopped the alarm and tried to reassure you that all was well and that it was a lead impedance issue.  From what I have read ICD alerts usually occur when

Your battery life is low

There is a fault with the device or lead(s)

You have received a therapeutic shock due a serious arrhythmia event

There is magnetic field disabling or interfering with the device

The device has been unable to communicate with your home monitor for longer than the recommended time (2 weeks?)

Two days ago, your alarm sounded again.  I note you went in to see your team for an interrogation.  Your alarm was turned off and so was a coil.  The assistant said she was moving your June appointment to March 18.  She said your doctor will explain all your options, what needs doing, if anything, at that time.  This tells me that perhaps nothing concerning was detected by way of a serious event like an arrhythmia, requiring immediate additional treatment (medication) or that your leads/device weren't so disabled that you required an immediate fix but perhaps I am mistaken?

I would be somewhat reassured that no harm will come to you until you can be seen on the 18th March but I would make sure that you put together a list of questions you want answered so that any fears or concerns you have at present can be addressed on the 18th and I would push to have your device changed as soon as possible to try to overcome whatever difficulty has occurred.  I feel it might be one of the options they will put forward in any case.

Can I ask whether you have noticed any symptoms like worsening arrhythmias, breathlessness, fatigue?   Worsening symptoms would tell me that my pacemaker/ICD was not functioning well (battery/leads).  I would then seek an earlier explanation and appointment.  If on the other hand you feel stable and you feel you can wait until the 18th, then this is what I would do.  If your condition changes, go straight to ER for urgent checks. 

Yes I would agree it would appear that something has happened because you are needing to attend earlier for a full assessment and explanation of the way forward but until you are seen we can only speculate about what might have happened.

I do sincerely wish you well

 

Germita's done it again

by Tulp - 2021-03-05 17:02:25

We are so lucky to have this site. I sure hope Germita post has made it easier for you to bare.

I totally understand why you are worried, I guess most of us xould be, being in your situation.

I also agree with the one fact that your appointment was advanced "only" 2 months. If It is was really urgent, they would have scheduled you earlier.

Tulp

Information

by AgentX86 - 2021-03-05 19:20:01

It seems the good news is that they think two weeks won't be a problem.  The bad news is that it's two weeks and you have a problem.

I don't have any idea what they downloaded or what they're looking at but I would presume the "coil' is the device that stores the energy for the ICD's jolt, much like a camera flash (remember them whining when "charging" for another flash?).  I could easily be all wet, though.

The technicians aren't allowed to tell you anything, though often do if it's low priority stuff.  Anything important has to come from your doctor or one of his aids (an NP or PA working at the direction of your doctor).  It is unnerving when everyone is rushing around with their hair on fire but won't let you in on the joke. 

I had a similar case after a nuclear stress test.  Everyone knew it was bad, except me.  My cardiologist was in the hospital that day but the head of the group sat down with me and went over at least some of the findings.  It wasn't good but at least I wasn't kept in the dark, thinking that there was no point in saying anything...  I get where you're coming from and it's really unacceptable that they didn't have someone available to at least crank down your anxiety.

makes some sense to me

by dwelch - 2021-03-18 00:13:41

So the story makes sense to me, from a technical perspective. But as mentioned above, it sounds like you do have a problem.  

yes coil means inductor means stored energy that is how you store energy/electricity that you want to dump quickly as in jolt the heart.  It is how they did or perhaps still do cause a spark in your engine every stroke of the piston, charge a coil during the stroke then dump it through the plug.

Sounds like there is a problem with the device if turning off a coil (this implies there are multiple coils in the pacer and the ability to turn them off was designed in, which implies they tend to fail) and not the lead as turning off a coil wouldnt do anything to fix a lead (okay I can think of a few things, but will see what they say).  

It sounds like this coil or some part of the device had failed and you got multiple alarms and then they turned it off.

As far as the tech goes, they cannot tell you stuff, period.  This was a non-scheduled visit during a pandemic, so in and out as fast as possible they have other scheduled patients to see.  I would not read anything into that experience. 

It very much sucks that you cant get answers for a few more weeks.  Ideally you wont get anymore alarms in that time, if you do deal with them if you dont, then make sure you make the visit. also understand this is an unscheduled visit so the doc may be trying to get you in and out quickly as well as the tech was.  but try to get your questions in.

Was this the lead or the device or both?

If lead then do I need another?  If I dont need another will this lead failure change the usefulness of the device.  If I dont need another will this lead failure result in an increase in battery consumption and a shorter device life?  How much of an increase and how much shorter.

If you do need another lead then how soon, do we remove the old one.  who does the procedure, how many lead extractions have they done, is there a specialist in this town or next town or two hours away that I can go to?

if the device then are there spare coils, how often do coils fail, is it normal to have a coil fail within the life of a device.  Will this failed coil continue to cause alarms and affect the device.  with this coil disabled is the defibrillator function less effective?  by how much.

if there are no spare coils then am I safe to drive, walk, stand, etc is the defibrillator function turned off?  (even if there are spare coils is that feature turned off now)

if the device, do we need to replace the device?  how soon can we replace the device.  am I at an increased risk while waiting to replace the device?

if both device and lead, will they remove the bad lead when getting the new lead and device.  Can I have a lead removal specialist remove the lead at some later time.  is there room for the broken lead plus the leads I am using in the mean time.

Just turn your emotions off and talk shop with the doc they will respond to that.  Then you can go home and cry or cheer or whatever the appropriate response is...Take pencil and paper to take notes or make notes in your phone or ask if you can record the conversation so you can remember all the answers to your questions.

As an engineer I would be anxious about what happened and hate the wait to the next visit, but from what you have reported, there is a good chance (nothing is ever 100%) that they have turned off the problem long enough to get you a visit with the doc to talk about it.  for all we know they could very well be ordering the new device or lead and may be calling you to schedule a surgery.

Hmm well I am reading this late night on the 17th the 18th is tomorrow and for all I know it might be the 18th there.  Good luck!!!

 

You know you're wired when...

Your pacemaker receives radio frequencies.

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