Pacing has increased very quickly

Hello everyone,

I hope you are all well and happy and getting on okay with your devices.

I have 2nd degree type 2 heart block and had my pacemaker implated 6 years ago. When I first received it I hardly needed it and used it 1% of the time.  Fast forward 6 years and to my check up yesterday I am now on 90%.  This year I have have actually had a vast increase in use starting in January at 50% and ending December on 90%.

My cardiologist is now doing various tests that started with a chest xray to check for Sarcoidosis of the lungs which came back negative.  Next up is cardiac MRI to check for (which I have had a few of before) to check for Sarcoidosis of the heart. Then he wants to run a test in his rooms where he gives me a beta blocker (never ever had one before) to slow my heart down where Ill be linked up to a new kind of ecg machine that monitors what my pacemaker is doing when it kicks in (my base level is set at 50).

He also wants to check for synchronization and if there is an issue he suggested placing a 3rd lead in a different position and disconnecting the one lead that could be causing exessive pacing.

Has anyone every had anything like this happen before with such a big increase in pacing in a relatively short space of time and what was the reason for it?

Could it not just be that my heart block has progressed over time and I now need the pacemaker more?

Any advice and sharing of your own similar stories would be great appreciated.

PS : A bit about me : I am 48, female, recently lost 19kgs due to a calorie deficit and lifestyle changes (my BMI is now in perfect range) - I excercise at the gym 3 - 4 times a week quite vigorously with no issues.  Its taken me the past 10 months to lose the weight and change my lifestyle.

Love & Light! x 

3 Comments

Pacing demand

by piglet22 - 2023-12-12 05:52:02

I was told early on when Complete Heart Block (CHB) was diagnosed, that the type and pacemaker dependency would probably progess.

A bit like being told you will need glasses by age 45.

Sure enough, it happens.

My pacemaker dependency is now 100% atrial and 98% ventricular or it might be vice versa. The glasses are a permanent fixture.

It's a bit scary but it's life, it doesn't concern me.

If you are being regularly monitored, say once a year, then these changes will be recorded and there should be nothing to worry about.

I'm sure that if an unusual change had happened, your team would tell you, but it might be worth raising next time you see them 

pacing

by Tracey_E - 2023-12-12 12:08:45

It's entirely possible this is the natural progression of the heart block, however it's great that your doctor is being so thorough. If this is what it is, then the pacer automatically kicked in to pick up the slack as the block got worse. So it's doing it's job. 

It's also possible that your block is worse with exercise, so exercising more will mean more pacing. But not 90%! 

Something to keep in mind, there is no number that is considered a "good" amount of pacing. If you feel good, then it's a good number for you. The number changing isn't necessarily a bad thing, it just means the pacer is working harder to keep up with your current needs. Most of us with block pace 100%, so uh, welcome to the club? 

I see an adult congenital EP so he sees a lot of patients paced for a lifetime, many of us 100%. He is not a fan of adding the 3rd lead proactively. He feels it's better to go with less hardware until ejection fraction falls. He said patients that go 5 years of pacing without a drop in EF almost never see the drop later and therefore will never need it. 

 

Mine progressed fast

by PacedNRunning - 2023-12-15 14:55:48

When I had mine implanted I used the device anywhere from 10-30%.  After 9 mos my pacing demand increased to 50% and within 6 mos, I was up to 90-100%. I've been 100% for the last 3 years.  My doctor explained heart block gets worse not better.  I wish it would have taken 6 years to become dependent on my device.  I'm also glad your doctor is doing thorough testing to ensure that it's just the natural progression of heart block or something else going on. 

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