Atrial pacing is consistently increasing. Thoughts?

pacing

by Tracey_E - 2018-01-15 09:41:19

The numbers are averages so it's common for them to vary a bit. If they are trending up, that means the sinus node is getting lazier. That can happen with other disease, with age, at random. There isn't a way to stop or prevent it, and you already have the fix, so I can see why your doctor isn't stressing over it or doing anything about it. Do you have regular echos to keep an eye on function? As long as your function is good, increased pacing isn't a big deal.

That said, if you don't have confidence in your doctor, get another one. Life's too short to be second guessing your cardiologist, you need to be able to trust him/her. 

What Tracey said....

by Gotrhythm - 2018-01-15 15:40:30

I echo everything Tracey said. Electrical issues with don't stay the same, and in fact, over time, usually get worse. That being the case, you really need an EP you can trust to be on top of things, to listen to you, and to make changes in your settings that maintain your best possible quality of life.

Not all doctors, even good ones, are up to the challenge of treating the rare disease or unusual rhythm issue. You'd think, if something was beyond their level of expertise, they would refer you. In my experience they don't.

It's up to you to advocate for yourself and find a doctor you trust.  A heart condition is worrisome enough. You really don't need to feel like you have to second guess your doctor.

Thanks!

by laughingarcher - 2018-01-16 19:10:54

Appreciate the feedback!  With the sarcoidosis I will have an annual Echo, more often if my symptoms change. So far my function is normal. I send in my remote report every three months. Any changes, of course, have me wondering if the sarc is getting worse!

I don't have a dual chamber PM.  Could the increasing atrial pacing be a sign of pacemaker syndrome?

It's not that I don't trust my EP (I actually really like him!), it's just that he's not very familiar with sarc (most of my doc's aren't) so I feel better double-checking.  :-)

pacemaker sydrome

by Tracey_E - 2018-01-17 09:35:29

It's highly unlikely you have pacemaker syndrome. You'd have symptoms. Increased pacing is very common so as long as your function is good and you feel good, I wouldn't overthink the numbers. 

Have you tried to find a practice that has other patients like you, maybe one of the big ones like Cleveland or Mayo? You wouldn't necessarily need to move your care but it might give you peace of mind to have a consult with them. I did that two years ago, found an adult congenital practice with a large number of patients like me. I adore my cardio, but always felt like he was making it up as he went along with me so it was interesting to talk to someone with an indepth knowledge from hundreds of similar patients. 

Sarcoidosis center consult

by laughingarcher - 2018-01-17 16:53:43

Thanks, Tracey, that's a great suggestion!  I often go to Cleveland Clinic's website to do research. Consulting with them is pretty expensive, but I wonder if I could get my insurance to cover some of it?  I get the same feeling from my doc's, that they're making it up as they go along 'cuz they just don't know.  My PCP has advised me numerous times to do things that are exactly opposite of the current best practices for sarc. Fortunately, she's pretty open to being educated! She's also been good about referring me to our local teaching hospital which does have a few experts on staff.

I'll look into the consulting idea. Thanks again!  :-)