How to know if settings need adjusting (exercise related)

Hi all!  This is my first post but I've read a lot and you all have really helped me through the last few months.  I'm a 38 year old woman who was diagnosed with complete heart block in January and got my PM on Feb 21st.  I have two young boys and I'm a distance runner so not your "typical" PM recipient.  Physically I'm recovering well and mentally/emotionall I have good days and bad regarding acceptance but I know that will take time.  

I started easing back into running two weeks post implant and am working my way back.  Currently at 5 miles and now 5.5 weeks post implant but I'm a marathon runner so I'll be increasing milage a lot more.  I've talked with my EP about my distance running and he's told me the PM won't affect it and I'm fine to train.  While I feel okay during my runs, my running pace has been so slow compared to pre-PM.  I've read other posts on here about people feeling tired and fatigued during exercise after receiving their PMs too.  I've had two device checks with the EP nurse since my implant and she said all is operating normally and well.  

My questions:

1.  How do you tell if your fatigue during exercise is just normal getting back into shape after the surgery vs. needing adjustments to you PM settings?

2.   What specific questions would I ask my EP regarding the settings or possible adjustments?  They all tell me that I'm fine to run and the PM shouldn't affect anything but I don't know if there are additional details I should ask or share about how I'm feeling.

Any thoughts from those who have needed adjustments or who have had their settings optimized for exercise would be so helpful as I'm struggling to feel "normal" after all this.  Thanks!  


10 Comments

Rate Response

by Swangirl - 2019-04-02 15:10:41

If you had a complete heart block you need to understand the rate response feature on your PM.  I'm assuming that your atria will beat normally but the PM will have to beat the ventricle.  I'm so sorry that a young person like yourself with such a great aerobic capacity and athletic ability is now dependent on a device.  I was a runner too for 31 years but not like you.  I managed 5 miles a day 5 days a week, and not very fast.  

A year ago I got a dual chamber PM for a complete heart block and my ability to exercise is very compromised from what it was.  I'm much older than you are but often I am struggling and breathless walking uphill or playing racquet sports.  I have had my rate response adjusted three times but I think this is as good as it gets for me.  

I expect you will hear from others on this site who are managing to exercise at a higher rate with a PM and will get some advice from them.  My rate response works by foot strikes and upper body movement so I stamp my feet a lot and tap my pacemaker and that seems to kick it up a notch.  

You'll find your new normal I'm sure.  This is a great site and people here are so caring and helpful.  It's been a boon for me.  I wish you the best!

running with heart block

by Tracey_E - 2019-04-02 16:22:56

If the only issue you have is heart block, then it's super easy to tell if your settings are adequate or not. The sinus node in the atria is the brains of the operation, it senses oxygen levels in the blood and raises/lowers our rate accordingly. The sinus node tells the ventricles when it beat via the av node, they are the brawn and make the strong contraction we feel as our heart beat. With av block, the signal doesn't make it to the av node. The pacer watches the atria, in theory it doesn't need any help because that's not our problem. Every time it beats, it gives the ventricles a fraction of a second to stay in sync, kicking in with pacing as needed. Our heart is setting the pace, all the pacer is doing is completing the broken circuit and making the ventricles beat when the atria does. 

Things they can adjust... 

They can tinker with how quickly it kicks in, how long it lets the ventricles have until it paces. Ask if having a shorter delay would help stamina. 

They can adjust the upper limit. That's how high the ventricular lead can pace. It should be set 10-15 bpm above where you normally get when you run so you have a cushion. For me, I average 160's but sometimes get as high as 175 so my upper limit is 190. That's super high, btw, but it works for me. From what you are describing, this does not sound like your problem. Sometimes they start it low, 130-140, which is plenty for older and/or sedentary patients. If the atrial rate gets to 150 but the pacer can only get the ventricles up to 140, then the heart is out of sync and it feels a bit like hitting a wall. They can tell for sure when they interrogate, but it's unlikely you'd go over your upper limit and not feel it. The impact would be immediate, not overall fatigue, but ask where your upper limit is and if you've gone over it. 

Last thing they can tinker with is rate response. Ask if it is on. Rate response gets our atrial rate up when it doesn't go up enough on its own. It's unusual to need this with av block so some doctors turn it off to conserve battery. Some turn it on just in case we need it.  It's possible that if it's on, it's competing with your natural sinus rate and you'd feel better with it off. If it's on, see if you can try it off for a few weeks. Mine was off and we didn't think I'd need it but we tried it on, and it helped. My rate goes up when I work out, but sometimes the pacer gets it up faster than my heart would go on its own so the boost helps. 

That's about it for settings with av block, it's a simple problem with a simple fix. Most of the discussion you see about adjusting settings is rate response for people whose atria doesn't work like it should. Trying to duplicate a natural sinus rhythm is a lot more complicated than completing a broken circuit. 

If I had to guess, I'd say your body just needs some more time to recuperate, to get used to being paced. It's a simple surgery but it's still a shock to the body and often we were compromised for a long time before we were diagnosed and treated, so it takes some time to get back to where it was.

Last thought, sometimes a paced beat isn't quite the same as a natural beat. It's close, but some people find they don't get their endurance back completely. 

Most younger av block patients are otherwise healthy and have no other heart problems. Your problem is rare, but for those of us who have it, you're actually pretty typical. Welcome! Sorry you are dealing with this but glad you found us. 

Thanks!

by marathonpaced - 2019-04-02 17:47:13

Thank you both for such quick and thoughtful responses!  Yes, my only issue is the AV block (transient) and all other heart systems are operating normally.  

I asked about my limits during my 4 week check up and the EP nurse said my lower limit was set to 60 and upper to 120.  When I asked how the PM responds when I go above 120 (as I do when running...I hover in the 160 range and can get as high at 180) she said "It doesn't do anything.  The PM will only kick in between those limits."  Does that make sense or should I ask for my upper limit to be raised?

I know I have rate response turned on for now but I don't know the details of those settings.  

I plan to give it another month or so since I know its still new and I'm still recovering (had it implanted sub-pec to hide it so I know recovery is a little longer).  If I'm still struggling in another month, I plan to make an appt to discuss things and get checked out. 

Your thoughts are all so helpful as I try to gather data and analyze what's going on so thanks again!  As I said in my inital post, I'm still dealing with the mental side of all this which has been way harder than the physical stuff.  Running has always been my "thing" and its hard to be struggling with that along with everything else too.    

more thoughts

by Tracey_E - 2019-04-02 18:25:06

Your heart can go as fast as it wants on its own. The pacer is a gas pedal, not a brake. If your upper limit is 120 and  you are getting higher than that, that's all you and you aren't pacing at that time. It sounds like you are not in block when you are running and the pacer is just watching. Whether you use it or not,  I would still ask to have it raised so you have a cushion over where you're likely to get while running. You may or may not need it, but if you do go into block while running it's good to know the pacer will keep up with you. Some devices only go up to 180, so that may be the max they can do.

Minimum rates are more or less irrelevant with av block. That's when the atrial lead will kick in if the sinus rate gets too low. 

If rate response is on, when you go back next time ask how much you are using it. If you aren't using it, ask about turning it off to save battery. If you are using it, see if the times it kicks in correlates with your runs. If it doesn't, then no reason to open that can of worms. 

Had similar issues.

by Kassandra - 2019-04-03 00:46:23

Fairly new here - got my PM May 2018 at age 45 for AV block. Never a marathoner but always an athlete. Took six miserable months to convince my doc (no EP - just a cardiologist and the Medtronic Tech) to turn off my upper limit and lower my resting to 40 BPM - they had me at 60-120 and I felt awful.. I feel great since the new settings. You really have to speak up and advocate for yourself. Good luck and happy trails!

Upper Settings

by bobrichards55 - 2019-04-03 14:54:18

I agree with Tracey, I think that you should have your upper setting raised to at least 160.  That's what I have, and I am a 63 year old former marathoner and current hockey player.  I did see my pulse up to 188 during my last visit and wondered how it got above 160; I think I got the answer from another post, I guess I was not pacing then.  Good luck!

Bob

by Tracey_E - 2019-04-03 16:09:02

If your pulse is above your upper limit, that's your heart, not the pacer. In that case the pacer just watches. 

Thanks again

by marathonpaced - 2019-04-04 12:58:07

Thanks again for all the thoughts and comments.  I'll ask about raising the upper limit and rate response at my next appt but sounds like I probably just need more time to get back into running post PM.  Of course I was looking for any excuse to blame my slowness on ;)

I hit my 6 week mark today and celebrated with some gentle yoga and a dance party with my kids where I could finally raise my arms above my head!  Learning to celebrate the little things that I previously took for granted.  

50/170

by Shana - 2019-04-05 10:26:39

Hi,

I’m almost 4 weeks out.

We adjusted my settings to 50/170 at my first appointment. 

The 170 was specifically because of exercise. I pushed through that ceiling this week while working out. 

The next thing I saw on my watch was my heart drop to 160. I ‘think’ this was the PM...but still learning. 

My EP team were committed to dialing in the settings so I could maintain my exercise/training level, 

Congrats on your 6 week milestone!

 

 

 

 

 

 

 

Me too

by Tiffsterty - 2019-04-13 06:14:34

I’ve had my fair share of adjustments since getting this thing. I have intermittent AV block second degeee with exercise only. It was my understanding that you can go over your upper limit but you start to Wenckebach or drop beats. It’s when you hit your TARP that you 2:1 and drop in half. I pace 100% in my bottom lead with exercise but my top just watches. I’ve been told most with AV block complete when they exercise their AV nodes wakes up and they don’t pace. I will tell you my stamina isn’t as good after pacer but we are getting there. It’s trying to find the right setting that works for you so it can take sometime. I will say I’ve read that V pacing alone decreases stamina. So if you pace a lot with exercise that could just be our new norm. 

You know you're wired when...

You can take a lickin’ and keep on tickin’.

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A properly implanted and adjusted pacemaker will not even be noticeable after you get over the surgery.