Pacemaker dependent

Hi, new here, just found the group. I had a pacemaker installed almost 2 years ago. I was involved in a car accident that resulted in my Tricuspid value tearing. As a result a growth started to form in my Rt ventrical around the valve which started to cause serious PVC's which was found after a life scan. I was told I was lucky they found it and that usually these things dont end well. Anyways, I had some complications with my distolic rate when they took the growth out and replaced the valve resulting in me becoming pacemaker dependent. My Astolic then started having issues adn I am now completely dependent. This happened at 43y.o. I am now 45 and havng serious issues with my cardio. I was wondering if anyone had a similar incident and how long until you improved on your cardio. I find myself winded easily and my heartrate skyrocketing quickly. 

 

I have told my doctors and they just say keep going it takes time. I have tried the program couch to 5k thinking it would be a good jumpstart to get the cardio going and I cant even surpass week 1 in teh training and I have been doing it for 4 months. It consists of a brisk walk for 1.5 minutes followed by slow job for a minute and doing this back and forth for 25 minutes. Is there a better way to help with the cardio issues or is this the new normal? Thank you for any information you can provide it will be greatly appreciated. 


6 Comments

Dependent

by AgentX86 - 2020-09-03 23:42:53

Being pacemaker dependent has very little effect on your conditioning.  If you're having trouble with simple exercise, particularly after two years, you really need to find someone who can tune your pacemaker to your needs.  Talk with your EP. You may not get to 100% because your EP may not want you to raise your heart rate fully but you should be able to do pretty much anything you want to do, albeit maybe not at 100%.  Many here have not trouble at all.

thank you

by TimG75 - 2020-09-04 02:45:42

Thats what I was thinking, I hear people say they run marathons with their pacers and I cant even gain an edge after 4 months of 5 day a week jogging. I do think something is wrong with teh settings. Thank you for the response and input I really do appreciate it. 

Have your PVCs settled ?

by Gemita - 2020-09-04 06:07:08

Hello Tim,

I am certainly no pacemaker expert, since still learning about mine, but apart from adjusting pacemaker settings, have you asked your doctors whether you are still getting benign arrhythmias like PVCs or any other arrhythmias that may be preventing you from reaching your full exercise potential ?  Also are you on any medication, like a beta blocker to prevent you from having these rhythm disturbances or to control your heart rate since I note that your heart rate can "sky rocket".

My arrhythmias when they occur, together with certain meds, can certainly slow me down, preventing me from carrying out my activities, so I would definitely seek advice in this area or ask for long term additional monitoring to see how your heart is performing.  In any event, you and your doctors need more information to see what is going on so I wouldn't be satisfied with their reassurance that all is well.  Additionally have you had a recent Echocardiogram to assess how your heart is working, or to look at your valves, the size of your chambers, your ejection fraction ?  Might be a good idea.  

What I would also do, is to ask for a copy of your pacemaker data (last report) so that you can see what has been set up, what your settings are, whether there have been any significant events recorded.  The more you can find out, the better.  Good luck

hi

by Tracey_E - 2020-09-04 10:53:40

Glad you found us. I have never heard of anyone having that kind of damage from a car accident and surviving, what a crazy story! 

There are medications to stop the skyrocketing. 

Have you had a stress test so they can watch what your heart is doing when you try to exert? That can answer a lot of questions about how hard you can push and help fine tune the settings. 

Have you had an echo recently to see what your function is? The pacer makes the heart beat faster but it can't make it beat harder. An echo will show how hard your heart beats.

Not all doctors are a good fit for all patients. Some are couch potatoes themselves and don't prioritize our desire to be active. Others will go to great lengths to help us find the answer. Some have more experience with younger active patients and complicated cases than others.  It's ok to shop around to find one that will work with you rather than write you off. 

I don't use the word dependent often because I don't like the connotations, but I pace every beat. As Agent said, being dependent doesn't have much to do with our abilities. For me, I passed my last stress test with flying colors, my echo is perfectly normal, my function (in my ep's words just last week) is that of an 18 year old, my settings were optimized by the engineers who designed it (I was a case study, long story). Everything is absolutely normal other than I am paced. You know what? I'm still a super slow runner. I train and train and train to have a 12 minute mile, as much as 14mm if I'm doing any kind of distance. I can finish a Crossfit class no problem, but I can't run more than a minute without stopping to walk. I did my first half marathon a few years ago at age 51. I never said I was fast lol, just that I finished. Others here are much faster and go much longer distances than me, we all have different abilities and capabilities. I will never be fast. 

I tried Galloway, which is similar to C25K in that it's run/walk intervals. I couldn't get past the first week on that plan, and I had already been doing Crossfit for years so I was as fit as I'd ever been but the intervals were too much for me. I cannot push hard for any length of time, my heart rate gets too high and I get gassed. If I go hard, then back off until my rate comes down, push, back off I can literally keep going for hours. It took me a lot of miles to figure out what works best for me. If I'm training or doing a short race, I will run 45 seconds, then walk either 30 or 45. If it's a long race, I only run 30 seconds at a time with one minute walk. I tried working up to longer intervals but it didn't work for me.

If you can't run for a minute, there may be something else going on that's holding you back, or you may be like me that's just as good as it's going to get, or it might just take more time. Try 30 or even 20 seconds to start, don't feel you have to go by the plan. If that works, add 10 seconds. Stretch out the walking intervals if you need to. I do longer walking intervals in summer than in winter, however long it takes to get my heart rate back down.  I try to do the distance the training plan calls for but do it at my pace/intervals. But first I would want to have a stress test and echo to make sure there isn't anything else going on. 

One last thought, I see you are doing a brisk walk for the walking intervals. Try a moderate walk, give your heart rate more of a chance to come down. 

14 minute mile

by AgentX86 - 2020-09-04 19:57:04

Better than me. I'll never run again because my legs won't take the pounding (feet, knees, hips).  I'm sure my AV dyssynchrony doesn't help much either but I do a 17:30mi walking for 3hrs (10mi), every day. In the last week I just broke through from ~18:30 to ~17:30 suddenly (one day). No idea what happened but all of a sudden my legs don't get gassed during the three hours.  This summer, because of Covid, my cardiologist doesn't want me to go to the gym, so I'm on the street at 6:00AM. It gets too hot too fast here in GA.

The bottom line is that we don't have to be couch potatoes because we have a pacemaker and being dependent has nothing to do with it.  Dependent only means we could be in real trouble if our PM suddenly fails (they don't).

I agree with Tracey

by PacedNRunning - 2020-09-09 03:00:03

I've had to learn to run differently with a pacemaker. I pace 100% and rely on my PM.  I don't think I'm dependent bc I have a good escape rhythm.  when you say you see those running marathons with PM's. I thought the same when I got mine. I was a runner before my PM and couldn't understand why some had no issues and I struggled. I soon realized it was how you are paced.  those that pace in the ventricles have a harder time with cardio endurance than those that dont pace at all. many who can do marathons don't pace much at all with exercise.  That's the difference that I've noticed with exercise. I would do what Tracey said and see what run walk method works. I run 1 min and walk 40 seconds for 6 intervals, then walks for one minute and start again. So every 6 mins I take a 1:40 walk.It helps because this is when my HR usually starts creeeping to 170bpm. That walk allows my heart rate to go lower and I can start again. Pacing a high rates is taxing on the heart.  Definitely talk to your team about setting changes and perhaps a treadmill tweaking  session to better fine tune it for exercise.  It definitely won't feel totally normal but you should be able to run and enjoy it just as much. 

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I've seen many posts about people being concerned about exercise after having a device so thought I would let you know that yesterday I raced my first marathon since having my pacemaker fitted in fall 2004.