50 year old newbie.

Just got my pacemaker installed on Wednesday.  I got av node ablation and a 3 lead insertion.  I'm 100% dependant.

So far recovery is going well, i think.  No pain, but I do feel occasional palpatations which worry me.  I thought this was supposed to stop that.

This whole experience is terrifying.  I have no reference to determine what sort of things I should be concerned about.

I suppose I should just suck it up and be glad to open my eyes each new day.

Anyway.  Hello.  I'm new here.


5 Comments

Welcome

by Gemita - 2021-06-27 06:49:19

Hello Newbie at 50,

A few palpitations can be normal following a medical procedure because of the trauma and stress to our body.  I had worsening palpitations for a few months. 

In your case however, although your AV Node has been ablated to prevent any fast atrial arrhythmias from reaching/affecting your ventricles, you could still be affected by a ventricular arrhythmia, like a PVC (premature ventricular contraction) and this cannot be prevented by the pacemaker.  

There are however treatments that might help like medication and a higher pacing minimum heart rate, although after an AV Node ablation your doctors usually have your minimum heart rate set higher in any event to keep you safe until your heart gets used to pacing.

You could tell your doctors that you are suffering from palpitations and they can check your pacemaker data for any clues or order further investigations about the arrhythmia present causing your symptoms, but it is still very early days and all perfectly normal I would think.  

Of course the arrhythmias in the atria will still be there following an AV Node ablation, since an AV Node ablation does not cure the atrial arrhythmia(s) and your doctors should have discussed this with you?  Even so, because these arrhythmias are prevented from getting through your AV Node to affect your ventricles, you should no longer feel them or they should no longer cause troublesome symptoms, like a rapid ventricular heart rate which would be dangerous.  

Unfortunately a pacemaker cannot stop a rhythm disturbance or a fast heart rate, but it can prevent our heart rate from falling below the set minimum heart rate, treat sinus node dysfunction, heart block or help to treat heart failure.  Only a pacemaker with a defibrillator (for a significant ventricular arrhythmia) can trigger a shock to the heart to terminate the rhythm disturbance.   A pacemaker may however help to alleviate many of our symptoms by evenly pacing us.  I for instance benefit from a higher set minimum pacing rate and this most definitely helps with ectopic beats and even with more significant arrhythmias, so I have noticed a vast improvement in my quality of life and I hope it will be the same for you too once healing has taken place.

Adjustments

by Theknotguy - 2021-06-27 08:26:45

First, welcome to the club you didn't want to join.  Second, I feel Gemita has explained the situation very well.  Now for what they don't tell you.  

You are in the good ol' US of A where people can be sued any time for any thing.  Consequently the medical profession hides behind this wall of silence.  You want information, they're afraid to tell you because, good or bad, they might get sued.  So it's better to say nothing than say something that will result in a lawsuit.  So that's why you sometimes have to pry information out of the medical people with a crowbar.  Frustrating too, but that's the way it is.  

After you first get the pacemaker there are all sorts of thumps and bumps that go on while your body is adjusting to its new life. If you look over the forum you'll see questions because of pain, when to be able to start activities, and how to adjust to the new life both physically and mentally.  All of which is normal.  It would be nice if the medical people would do this too but they don't.  Add to that the fact that most of your conversations are with people who don't have a pacemaker so they haven't a clue of what's going on with your body or in your mind.  

Another problem is that disinformation about your pacemaker and how to live with it are repeated over and over with no thought about it being accurate or not.  I was given a "fact" sheet of ten items about my pacemaker before leaving the hospital.  I found out four of the items on the sheet were completely wrong and the other six items were partially wrong.  I also got into a conversation with a social person aiding in pacemaker recovery and she was telling me there was a life time limit of 47 pounds for lifting on the pacemaker side.  I was looking at her with an open mouth as I was regularly lifting and tossing around 50 pound wooden sheets.  Then literally walked down three flights of stairs and talked with another pacemaker owner who finally broke a lead bench pressing 300 pounds.  He said he knew he was pushing it but had been doing OK up to the 300 pound level.  So it's really hard to figure out who's right when they tell you not to use your cell phone on the same side as the pacemaker, to watch store security check points, to avoid cell phone towers, not to walk through gun security check points, etc.  All of which I've done multiple time with no problems.  And that information gets repeated over and over even when you know it isn't true. But for the newbie it's really hard to know which is good information and which is garbage.

The adjustment to the pacemaker can take weeks, months, and years.  It just depends upon what heart problems you have and how your body heals.  Also, the EP and cardiologist are reluctant to start tweaking the pacemaker at first because they don't know if it's a problem or your body is still adjusting.  For me, I think it was three months before my EP made the first change and then it was a small one.  And the other thing is, we all adjust to the situation at different rates. 

As for being concerned, yeah, that's normal too.  I'd be walking along, get a sudden sharp jab of pain and wonder if it was the start of the big one.  Turns out it was just nerves healing from the cut but no one in the medical profession told me that.  I think it was nine months before I got out of my car and walked across the parking lot without thinking about my pacemaker.  At five years out I ran into a problem where I'd run out of air.  Turns out I needed an adjustment to my pacemaker's rate response - and that was five years out.  So being mentally concerned is quite normal on your part.  

For me, I went the learning route and have attempted to learn as much as I could about my pacemaker.  I was on this forum a lot reading about various problems.  There was also the time factor.  The longer you have the pacemaker the more you trust it and that's a mental  help.  Oh, and I don't deny the whole experience for me was terrifying too.  I even spent time with a psychologist who deals with trauma and heart conditions too.  (Yeah, there are people like that out there.) So all of what you said is quite normal for newbies.  

I've gone on for too long.  I encourage you to come back to the forum with your questions.  The forum has quite a few people with a lot of knowledge and we all have heart devices so we know first hand what you're going through.  I wish you the best and hope that your adjustment goes well.  
 

Newbie

by Persephone - 2021-06-27 11:09:58

Hi Nev, it's nice to meet you.  In my opinion, sucking it up only works to a certain extent.  Give yourselt time and space to absorb this major life change, and accept that it will not happen overnight.  I also sought therapy and found it very helpful - may be easier to access now with internet appts.  I'm still coming here to this forum for advice and guidance after 3.5 years - we're all still learning.

TheKnotGuy is spot on!

by Julros - 2021-06-27 13:13:40

I have learned so much more here than I have ever gotten from the provider office. I swear the dos and don'ts list you are provided is mostly of out-date "cover our butt" crap from the manufacturers.

And I feel like I was patted on the head and told everything is fixed and if you don't feel great, well that's all in your head. I have pushed for more and gotten it, while being told "well, most people don't care." Well, they don't ask because they don't know what to ask. 

Yes, extra little jolts and palpitations are normal. Your settings will get tweeked and adjusted to fit your lifestyle, but you will have to advocate for yourself. 

Palpatations

by AgentX86 - 2021-06-27 19:42:38

As others have noted, palpatations are more than common just after PM implant.  It takes a while for the heart to get used to being paced, as well as the trauma from the surgery. 

Since you've had an A/V node ablation, these are undoubtable PVCs.  They're certainly not fun but won't hurt you.  They're common, even in people with normal hearts but the more often the more symptomatic one becomes (if they're rare, we ignore them as just another twitch).

I, too, have had an A/V node/His ablation (three years ago), though only have two ventricular leads.  I have no atrial function at all, or even a negative atrial contribution. I had some really bad PVCs for a while after.

You don't say why you had an A/V node ablation but, given the three-lead pacer it must be an intermittent problem (like paroximal A-fib?).  I have permanent flutter (the atria never do anything useful) so an atrial lead would be  superfluous.

Edit:  Don't "suck it up", just realize that your pacemaker will allow you to do things you wouldn't otherwise be able to do.  It won't end your life as you know it, it will allow you to live your life as you want.

You know you're wired when...

Muggers want your ICD, not your wallet.

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I am just now 40 but have had these blackouts all my life. I am thrilled with the pacer and would do it all over again.