Change in pacing percentage
- by Jenni.k
- 2022-10-05 20:41:32
- Checkups & Settings
- 454 views
- 5 comments
I have been diagnosed with Type 2 heart blocks and have had my pacemaker for 4 years; I always pace at less than 1%. At my interrogation yesterday it showed that it is now pacing at 20%. This seems like a huge jump. The tech thought it probably had settings that needed to be adjusted; my EP sort of shrugged and said "maybe your blocks are getting worse. I wouldn't worry about it." He did order an echo and asked me to come back in 6 months but didn't really seem to want to adjust the pacemaker. This seems sort of dismissive to me for such a big jump. I would think there are other things that need to be explored: settings, other underlying conditions that might be causing something. I left feeling panicky, concerned that my pacemaker is over pacing and will eventually lead to heart weakening, etc. In other words-my anxiety really spiked! Any recommendations as to what specific questions I should be asking? Has anyone had such a big jump before? I am 45 and otherwise fairly active. I'm now wondering if I even trust mu doctor. He spent about a total of 5 minutes with me and this was my annual check-in.
by Lavender - 2022-10-05 21:53:54
I posted similar concerns recently. Time spent with the doctors is so fleeting. We need more explanation.
When the pacemaker tech suggests setting changes, my dr always agrees. In your post from 2018, you said, "My EP was anticipating that I would use my pacemaker less than 1% of the time but at my first interrogation today it says it's going at 18%."
...so apparently you were pacing more even back then(?)
I'm thinking since your dr ordered an echo, they're not concerned right this minute and want to evaluate your ejection fraction before making a decision.
Get the echo. Then see what they say. It's so hard when you feel like no one is paying attention and you leave feeling unsettled. I just tell myself that if the dr is unconcerned then I am not going to read too much into it, but I want it explained to me.
by Jenni.k - 2022-10-05 23:24:38
Thank you both for your support. When I first posted back in 2018 they had me pacing too often when the pacemaker was first implanted. Within about a month they adjusted it and had me at 1% from there on out. That's why it seemed so startling to see the big jump. I still struggle with a lot of anxiety around the whole situation, though it comes and goes. This is certainly one of my higher anxiety times.
I hear ya!
by Lavender - 2022-10-06 05:51:26
As I said-I recently posted my own fears that the pacemaker was pacing more and I was concerned about the advance of heart disease. I don't want the pacemaker to cause more advancement. Then again-I am totally reliant on it already.
We have pacemakers because we need them. They don't lightly install these. You may be needing it more, but it's still so little. I'm thinking that you feel if they just tweak the settings it will go back to 1%. If you feel that you haven't gotten that idea through to your EP-after your echo-there will be another opportunity to discuss this with the new medical information.
Anxiety is natural after all we have been through. We lost our sense of trust that all is well. We are all much more attuned to our mortality and take nothing for granted. We want to preserve what where we are and no further issues. But life is always morphing. Change is the norm. You will do what you gotta do but first you need to be certain whether anything can be adjusted.
I know you're going to schedule that echo asap. Soon you'll have more information!
by dwelch - 2022-10-14 02:11:48
end of the day they cant tell 20% is nothing for heart block as Tracey mentioned for complete you are paced 100% of the time. I have a biventrical and both are 100%. I am level 3 though.
You are probably going to be level 3 some day.
For the doc to know you would have had to be hooked up to a monitor for the whole of the last year or the period since your last interrogation, and then have those zillion beat examined by someone. Essentially that is what that number represents... you are having more episodes. I would look on this is a great thing because, without the pacer those might have been life ending.
The doc is not being dismissive, it is that it is impossible for them to know, end of story. In order to figure it out would cause you a lot of testing, discomfort, interruption to your life, and no insurance would pay for it so a fair amount of cash. Even if you wore a holter for a few days it wont represent from a percentage perspective what the whole year is. Yours may be every x beats or yours may be that in march you had a bad month and the rest of the year no issues.
You know you're wired when...
You make store alarms beep.
So, my advice is to go about your daily routine and forget that you have a pacemaker implanted in your body.
by Tracey_E - 2022-10-05 20:52:39
It is extremely common for heart block to progress. 20% is still pretty low for av block, many of us pace 100%. As the block gets worse, the pacer automatically kicks in as needed.