Pacemaker setting recommendations

Hi! I'm a pacemaker newbie. I'm 41 and had my pacemaker implanted 2 weeks ago for Mobitz type 2; I really haven't had many symptoms but this is the second EP to tell me I needed one and I finally decided to get the darn thing. I have passed completely out about 5 total times in my life, usually in reaction to pain or to eating bulky food. I've worn monitors several times, and each time they caught blocks lasting 2-4 seconds--maybe about 3-4x/week, so not super long. The fainting occured at times when I was training for full marathons and my resting heart rate was in the 40s. I am still active and run, do cardio, weights, etc., just gave up on the full marathons. 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%. They turned the low setting down to 50 bpm from 60 bpm. I don't like the idea of the pacemaker going when it's not required. Is this just part of the waiting game to get the settings just right? I won't be going back in for another 3 months. I know everyone is different, but I would love suggestions for questions I should be asking or how I should go about finding just the right settings so that it truly is only used in emergency situations. Thanks!!


7 Comments

pacing

by Tracey_E - 2018-04-02 16:42:43

Couple of things... 

Yes,it does typically take a few tries to get the settings right, esp if you are active. 

Just because you got by with a resting rate in the 40's doesn't mean you wouldn't feel better with a higher, more normal resting rate. See how you do with it at 50 but if you feel better with it at 60, have them turn it back. The numbers aren't that important and there is no such thing as the "right" amount of pacing, it's how we feel. As long as you have it, you might as well maximize it to feel your best. 

Is that 18% atrial or ventricle? If it's ventricle, then the above doesn't even apply to you because your sinus rate stays above 60. The report should show a number for each lead.

 With av block, the sinus node is beating normally, our problem is the signal getting to the ventricles. So our heart isn't really beating slowly, our pulse is low because the atria is beating faster but the ventricles aren't getting the signal so they are out of sync. The pacer is completing the broken circuit and making sure the ventricles beat when the atria does. If you are pacing more ventricle than expected, they can adjust the delay and give the heart more of a chance to beat on its own before it kicks in with pacing. But again, if you feel good, I wouldn't mess with it too much. 

If you want to train for another full, go for it!

thank you!

by Jenni.k - 2018-04-02 16:55:43

Thank you so much for your feedback! I am obviously still learning because I don't even know whether the 18% was referring to the ventricle or the atrial pacing. I guess my fear (whether founded or not) is that it could be bad for my heart long-term to have it paced at times when it would be fine on its own, if that makes sense. I'm not sure if it's true, but in my head I am imagining it to leading to either a weakening of the heart, or developing some other complications that wouldn't have been there if I had never gotten the pacemaker. I was a little reluctant, to say the least, about getting the pacemaker at all, and I may be fixating on worst case scenarios just a bit :)

long term complications

by Tracey_E - 2018-04-02 18:44:27

We all think about the long term implications, that's normal! Think of it this way... every time your rate is too low, your organs are stressed because they aren't getting the oxygen it needs. Every time your heart is out of sync, that puts stress on the heart because the blood is filling up in the atria but not being pumped out by the ventricles. So, yes it's possible we can develop long term complications, and yes it's always good to eliminate unnecessary pacing... but when it comes down to it, the very best thing for us is to have a heart that beats fast enough to circulate the oxygen we need and that stays in sync. Pacing takes the stress off.

Our hearts are still doing the work by beating, the pacer just puts out the signal that causes the contraction, mimicking what our heart should be doing on its own. And the pacer always gives the heart a chance to beat on its own before stepping in, so it's not going to make the heart lazy because it's reactive, not proactive. 

It's possible that we can develop long term complications (heart failure) from pacing. However, those numbers are very low, and if/when it happens there are treatments. There are medications that help, they can add a third lead to the pacer so that it forces the ventricles to stay in sync (it paces both the left and right ventricles). I've been 100% paced since 1994. My heart function is the same now as it was before I was paced, every test comes back perfectly normal, I'm healthy and active. The benefits FAR outweigh any potential negatives. In my case, there have been no negatives so far, just annual check ups and the occasional new battery. Other than that, I live my life and forget about it for the most part. My doctors have all told me this will not affect my life expectancy at all. 

My personal opinion is being a cardiac patient may help us live longer. I was diagnosed in 1970 (I'm congenital) so have spent a lot of time in cardiologists' offices and on the cardiac floor of the hospital over the  years. Frankly, what I've seen there scares the crap out of me and I know many of the people I've seen have problems they've brought on with poor lifestyle choices. So when my peers are blase about eating junk or not exercising regularly, I'm thoughtful about both.  I will not complicate the problems I was born with with problems that are easily prevented. We are also well monitored. I have annual tests others my age haven't even heard of so I KNOW my heart is strong. If I were to develop a problem- either from pacing or just from aging- I'm going to know about it early and be proactive. 

Being scared is normal. Being wary of pacing and second guessing your decision is normal. As I healed and felt better, I learned to trust it and eventually be thankful to have it. Learning about my condition and how the pacer works helped me accept and get over the fear. Write down your questions before appointments, don't know about you but I get amnesia when they ask if I have any more questions! You can ask for a copy of the pacing report so you can see your numbers. I found that once they knew I wanted to understand, they were very forthcoming with information. Lots of patients don't want to know so sometimes they assume we aren't curious.

Also know you are not alone, lots of us here have been in your shoes and come out of it better than before. You'll get there. 

Running

by Kippers - 2018-04-06 17:10:54

Hi Jenni

I’ve had my pacemaker just over a year for pretty much the same reason as you and was wary at first of running. Am back to racing, fells, road etc, biking, weights, the whole lot. I find it hard to keep up a fast pace but reckon that could be due to my fitness so it’s hard to know. I sometimes wonder about settings too but all was fine at my one year check and they told me I was fine to run as hard as I like so I do. Definitely worth writing the questions down cos by the time you get to your check you,ve forgotten them all! Hope all goes well for you.

Thank you

by Jenni.k - 2018-04-06 18:50:56

Thanks for your feedback! I am curious to see how running goes. The tech told me at my 2 week appointment that I was good to go but I found myself so worried that I was going to bounce the leads out or something after a few minutes that I decided I could live with a few more weeks of just walking. I will definitely start writing down questions!! At this stage I just have so many!

same boat

by ewindfelder - 2018-04-07 20:58:50

I don't really know much about the settings, sorry.  I'm almost 6 1/2 weeks post op and in the same boat. My EP told to me wait 8 weeks before lifting my arm over my head and lifting anything over 5 lbs to be sure scar tissue has formed around the leads.

Before my pacemaker I hiked, ran marathons and lifted weights and now have a dual lead pacemaker and petrified to run again.  I have started to walk 3 miles a day and will hopefully be able to run again.

Good Luck and Speedy Recovery!!!

adjustments

by Dexter - 2018-04-08 14:54:01

The pacemaker shouldn't work if your heart is working, it should only be kicking in when it doesn't. It takes a few post-op visits to get it fine-turned. I complained about being able to feel it   operating at night while I was in bed and the sensation kept me up. They adjusted it and that went away. They also have to adjust it to the highs and lows of your normal physical activity. My bouts on the treadmill were my heart's high points and they had to adjust for that. Don't hesitate to give them feedback.

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