Finding Out Tomorrow if I Need PM

New PM

by AgentX86 - 2023-02-08 21:56:38

First, welcome to the club.  I hope you don't become a full member but we're here for you if things don't work out the way you'd like.

The most important thing to remember is that a pacemaker is only an accelerator.  It can only keep your heart rate from falling below some pre-programmed rate.  Some of us have more bells and whisles because of our particular problems but it seems that you're is as straight forward as it gets. 

Your heart increases rate appropriately (you're not "chronotropically incompetent") but your rate falls inappropriately (Bradycardia).  It seems that you have Sick Sinus Syndrome (SSS) but with appropriate response.

Everything's cool here. All your pacemaker has to do is keep your  rate up while you're sleeping and fill in any missing beats. If this is truely all that's going on, other than some checks once in a while, your life won't be affected at all.  OK, don't get whacked in the chest (it'll hurt like hell) and contact sports aren't recommended but otherwise, no limitations. I don't think a sports cardiologist would be appropriate, at least for now.  If you have problems (you won't) then you can get a referral.

To PM, Or Not?

by DavidB - 2023-02-08 23:21:19

Hello, you truly have a dilema - you don't believe a PM is necessary because your heart is healthy enough to run at high intensity, but the docs say you need one due to intermittent bradycardia.  Have you been diagnosed with heart block?  If so, what degree?  Do you have other cardiac conditions?  If you don't have heart block, or only first degree, consider a second opinon before getting a PM. 

I am an avid runner who had a PM implant about 13 months ago after a diagnosis of 3rd degree heart block and a resting HR of 35 bpm.  The heart block was detected during a routine echocardiogram (for a bicuspid aortic valve). I was told that I could continue my activities, and that the PM was only pacing at low HRs.  But PM's also have rate adjustment features that increase pacing based on sensed activity.  In your case, this would not seem necessary.  If you get a PM, make sure to ask them to explain it, and perhaps turn it off to avoid complications.

It has not been easy adjusting to the PM and running.  My latest echo has shown a decrease in ejection fraction of 17%, which is likely attributable to the PM. I have significantly slowed in pace and decreased in mileage.  But it is certainly possible that my experience is not the norm, as there are many other runners on this forum who have no issues with a PM.

A PM is for life. Choose wisely.

Thanks!

by Need2Run - 2023-02-08 23:47:18

Thank you both for you thoughtful responses.  
David, I have not been diagnosed with heart block but I believe I will have testing tomorrow to determine this, among other things possibly.   
I am considering a second opinion depending on how things go tomorrow, primarily depending on the doctor's willingness to work with me on the impact of a PM on an active lifestyle. 
Thanks again! I appreciate your input greatly! 

I’m a runner.

by PacedNRunning - 2023-02-09 01:28:14

Great questions! If you only have bradycardia at rest and pauses with sleep the PM will only work during those times. They can set it to only work for low HR. Once you start exercising the PM will just sit there and watch. It should be only on demand, so only pace when needed. I got mine for heart block and I was not symptomatic  with bradycardia. So I was set at 40-185bpm. They wanted my own heart to work as much as it could. If you only need pacing with resting you'll feel no different with exercise because the PM will just sit there and watch. Which is great. I unfortunately pace all the time and rely on it for exercise. It's a little different and took some time to get use to. I'll think you'll be fine. Second opinion will be good because if you are a runner, they typically won't place a PM because we can tolerate low HR but 5 second pauses may be enough to warrant one. 

If you do end up getting one, you'll be fine with running. I don't see any issues and I've talked to many runners with pacemakers and the biggest difference is whether it paces you with exercise or not. 

pacing and running

by Tracey_E - 2023-02-09 11:55:36

Your running may improve. Those dips at night take a toll on the body.

Bradycardia is more a symptom than a diagnosis, it just means low heart rate. What causes the low heart rate determines how the pacer works. 

If you have heart block, all the pacer is going to do it make the ventricles beat when they don't stay in sync with the atria. If you are running and your rate is going up normally, the pacer will just sit back and watch. With heart block, it's reactive, not proactive. Your heart will set the pace (so to speak), the pacemaker plays follow the leader. 

If you have sinus issues, the pacer has to work a little harder because it needs to set the pace. Some sinus issues are only at rest and once we start moving, it works just fine. If that's the case, the pacer's main job will be to not let you get too low or add beats when it pauses. Again, easy fix, esp if your rate is normal on exertion. It's when it needs help on exertion that it gets a little more tricky. 

Sports cardiologists are great for complicated cases. On the surface, yours is not at all complicated but sometimes it's nice to have a doctor with a practice full of other active patients. 

Leadless pacemaker

by _Claire_ - 2023-02-09 17:49:54

Hi there

I have sinus node dysfunction/sick sinus syndrome and vasovagal syncope. Although I got my pacemaker in an emergency situation after a long pause, had that not happened I'd probably have been in a similar situation to you right now! I also had smaller pauses around 5 seconds found on my loop recorder. My heart rate was in the low 40s at night for a long time. I have a normal response to exercise, it's only at rest (particularly at night) that my heart rate would get very low. I just thought this was because I was very healthy and exercised A LOT, but there was more to it with the pauses.
 

I am therefore a very straight forward case too, as you appear to be from the info you've provided. I was offered a leadless pacemaker because of this which is inside my right ventricle. This means a super short recovery time, no visible pacemaker pocket or chest scar, nor risks with small impact to the chest during sports. This was an attractive option for me as I was super active too. I have stopped the gym and weightlifting (but that's a personal choice only) but was cycling frequently. I have slowed down recently (and hopefully temporarily) due to some potential new arrhythmias which are worrying me a little, but I think the leadless pacemaker is a good option for very straight forward cases with simple pauses and bradycardia with a normal response to exercise (if that makes sense, I'm no expert). My rate is set to 40bpm and the pacemaker does absolutely nothing unless my heart rate drops below that, which is almost never. If I had a vasovagal syncope episode it would kick in and stop a long pause.
 

So to cut a long story short, my pacemaker doesn't directly impact my life day to day and from what you've said, I don't think if you got a pacemaker that your life will change either. The leadless micra pacemaker that I have is a very basic pacemaker and there are pros and cons to this which should be researched first. It's not suitable for everyone. If the heart is needing the pacemaker regularly, I don't think it's better than a traditional pacemaker at all, which I believe generally have more features and can store important data etc. I am sensitive and feel some of my pacemaker's functions, it feels like a small electric impulse or a strong ectopic beat (pvc) I think this chance is higher with the leadless PM due to it being directly inside the heart, but I'm not sure how other people experience it. I wonder if they will explore the leadless option with you. It's worth asking about! 
 

Good luck :) 

I was in your shoes 6 months ago

by Mad Hatter - 2023-02-09 18:31:48

Got the pm in August, started running again two weeks later, ran a 10k in October and a 5 mile trail run  in November.  No issues at all with running.

But make sure your EP knows about the running as they may need to adjust your settings accordingly.  You'll be fine.

steve triathlion

by stevebne - 2023-02-09 20:58:51

I think the key issues are:

(1) we all have slightly different underlying medical problems, either diagnosis or stage of disease plus a range of comorbidites, which means that your management needs to be tailored specifically for you and reviewed / adjusted over time

(2) we all have different lifestyle expectations, which means the goal of the PM needs to be adjusted accordingly. If your primary goal is to run, then you will need management that can best meet this task.

(3) not all PM are equal for sporting activities as each brand and model has different sensors, adjustment options and response algorhythms. Put simply, some are better at sport. However, running is the easiest sport for PM to work with.

(4) A PM is not a new heart but a machine to keep you going; the response to exercise is not really the same as a normal heart in a well person

I think it is important that you have a clear discussion with your cardiologist about your lifestyle goals to ensure that if you have a PM, the right model is chosen. There are very few sports cardiologists around, with effectively only one person in Australia (population 25m). However, my cardiologist consulted this person when sorting out how best to manage my condition. And now a few months down the track I have succesfuly completed 2 triathlons (the first without the swim as a team event). The PM still does weird things at times when cycling and swimming but I am just getting used to the limitations! 

However, at the end of the day, I owe my cardiologist and PM a great thanks as better than succumbing to my heart disease!!

Update

by Need2Run - 2023-02-10 21:34:10

After additional consultation my Cardiac EP is not ready to make a recommendation on a PM, so he ordered a cardiac MRI so now it's back to waiting.  I was a bit dismayed that he said my ekg was somewhat bizarre.  Apparently the indicators on ekg are not consistent with other tests I've had.  Still, overall I am pleased with the process so far, no rush to judgment and hopefully each additional test will reveal new information. 

I have been warned that the wait in Sacramento, CA can be long for this type of test, but for now it's wait and see.

Thanks again to all for the sharing of helpful info and insights, this has been a great help in guiding my conversations with the medical team!

MRI

by AgentX86 - 2023-02-10 23:04:02

I'm not sure why it'll take very long (days, if not hours) in Sacremento. I see 36 MRI facilities in Sacremento. One of them has to be able to do it. 

If you have a choice, don't go to a hospital for an MRI.  Private imaging centers are a fraction of the cost and often less than the insurance copay for hospital imaging.

Unfortunately, those of us with pacemakers aready have to to a major hospital.

steve traithlon

by stevebne - 2023-02-11 00:25:13

Yes, I had a cardiac MRI in my workup as well. Best to have everything done to help plan the best treatment plan.

:)

Still Waiting

by Need2Run - 2023-02-14 23:15:19

Seems there was a miscommunication on the referral for the MRI so hopefully tomorrow I'll get an update!