Initial Low HR Setting - Update after Adjustment

I had my appointment with the EP, that ended up being an appointment with his Nurse Practioner, this last Friday. The 30 min appointment ended up being over 4 hours and  was exhausting. I did get the PM adjusted. They didn't change the HR but adjusted other settings that had an immediate impact and I felt 100% better. However in the testing it appeared that only one of the leads (to the ventricle) was working properly. The atrial lead was intermittent and they were concerned it may have come loose. So off to x-ray I went. While waiting to check in there I had some, what I will say were very disturbing, scary, symptoms where it felt like the PM itself was beating and going to jump out of my chest. You could actually see it moving and it made my entire shoulder and arm move/twitch hard, as well. Needless to say I was freaked out as was the receptionist and she called a nurse for me and 4 came...lol. They wanted to call 911 but I told them it wasn't a heart attack and I really just needed to talk to the EPs office. So they finally got in touch with the NP who told me if I could, to go have the x-ray and then they would decide what to do. If the lead was loose in my heart I would have to go have emergency surgery to remove/re-attach it or if it had just moved and was working erratically they would turn it off and I could have surgery the following week to replace it. The good news when I went back to the EP's office was that the lead was still in the same place it had been after surgery (whew!) but the PM thumping or whatever you want to call it was still continuing intermittently. So they started testing again with different adjustments to see what was going on. One of the techs (I saw 4!) actually found what was causing the weird issue and said what I was feeling was the PM pacing (on the lead that is having the issue) but the output was high, she played with it a bit and could actually make it happen from a little to severe and eventually turned it way down. The atrial lead is still not working all the time but it is enough that it is not necessary to put in a new one right now.
I felt so much better but when I finally got home I was exhausted both physically and mentally and my entire left side, shoulder to waist, front and back, was sore as if I had done a really hard workout. I am also all bruised now at the implant site. I was pretty sore all weekend but managed a 3 mile walk yesterday and another today that felt great.

I won't be going back to the EP's office any longer for adjustments as they have referred me back to my regular cardiologist for that.

My questions now are regarding what should I be concerned about with the atrial lead  working only intermittently? Is this a concern/should I be concerned? What are the implications? I am concerned that it may cause the CLS to not function correctly since from the information I have seen from Biotronik it uses both leads to form the closed loop?

3 Comments

Not clear

by AgentX86 - 2020-07-16 23:04:54

You don't say why you have a PM but I looked back over some of your other posrs and see that you have Bradycardia.  Is there anything else (like a heart block) going on?'

A bad atrial lead can cause muscle spasms. Essentially the PM is pacing a muscle where at the break in the lead.  They turned down the pacing voltage in hope they could keep it from exciting the muscle and still have enough voltage to pace the heart.  Evidently that didn't work so well.

Even if the lead doesn't work to pace the heart it might still be useful to sense the heart's atrial signal (from the SI node) and repeat it to the ventricles.  However, that's a guess because I don't know your specifics.

Awfully Harsh

by Protimenow - 2020-07-17 04:55:08

AgentX86's comments seem to pretty clearly outline what was probably happening. It sounds very consistent with what was going on in that 4 hour ordeal. 

The bad lead could have been an issue with insulation in the wire, rather than poor placement in the heart. This would explain both the correct placement as shown on X-Ray, and the muscle contractions when the voltage was increased. 

It's an unfortunate situation, and one that will be repaired when the lead is replaced. 

I see no reason to brand the EP and staff as incompetent. I see no reason to fault the nurses and NP for taking a while to find what the problem was. Some of this is, unfortunately, a trial and error exercise. 

The harsh conclusion that the EP (and his staff, no doubt) are incompetent is a rush to judgement that, to me, seems unsupported by fact (although, perhaps, there were issues with the proper handling of a lead during implantation), and certainly not deserving of the vitriole that was directed at them. 

 

Let's focus on what *you* need

by crustyg - 2020-07-17 07:14:55

You *need* an atrial lead that works reliably, 100% of the time, at good sensitivity/low impedance so that your PM doesn't auto-adjust the atrial output up to a high output voltage again (with the effect that you've noticed).

If you have 'bradycardia' then you either have a failing SA-node - in which case you *need* atrial pacing, or you have some degree of AV-node failure (==heart block) in which case you *need* reliable atrial sensing so that your PM keeps your heart beating in the correct Atria==>Ventricles synchronous mode for as many years as possible.

Yes, there are other possibilities, and not everyone is lucky enough to have A=>V synch, but it's what is best for *you*.  You can survive without A=>V synch, and ventricular pacing alone can help, but it's far from optimal and is *likely* to bring its own complications in the future.

So, while it's not an emergency, you *need* that atrial lead replaced.  Fairly soon, if you can bring yourself to undergo a replacement.  Don't leave it for years - weeks are better than months, months better than years.  It's not unreasonable to imagine that you (and I) have at least another 20years to go - or more - so it's worth getting things right sooner rather than later.

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The pacer systems are really very reliable. The main problem is the incompetent programming of them. If yours is working well for you, get on with life and enjoy it. You probably are more at risk of problems with a valve job than the pacer.