Heart is so limiting for exercise

Hi everyone,

I'm new here and I tried to look back through posts to learn more, but I got a little overwhelmed. I'm sorry if this post is repetitive and you are welcome to point me toward other applicable previous posts. 
 
I got my first pacemaker back in August. It is a Medtronic Azure. It was quite a surprise because we have never had any proof of heart issues. My heart was running about 30 beats a minute when it had an eleven second pause before returning to its 30 bpm pace. I had surgery within days. (I'm 37 if that is pertinent.)
 

Before implantation, I was weight lifting 3-4 days a week and running or biking 1-2 days. Nothing crazy, just two or three miles at a moderate pace. Our family also hikes once or twice a month. Again, nothing strenuous but certainly active. 
 

My doctor didn't want me to do anything except walking for two months after surgery, so I did that consistently in hopes of maintaining fitness as best I could. When the two months had passed it was difficult for me to get back into a good routine. My 5 kids (kindergarten through high school) had 'gone back' to school (at home) and plenty of other excuses, but I didn't get back to regular exercise until December. 
 

For the last two and half months I have been on the struggle bus. It is a huge uphill battle to exercise- I just don't have the energy. I get out of breath so easily and my endurance is none. It has been so discouraging for me- I feel like I am working twice as hard to do the same stuff I have always done. 
 

My EP visits had only focused on if the pm was working and whether my incision healed appropriately. It wasn't until after they released me to one year checkups that I started googling and realized there were a variety of parameters that could be adjusted. I scheduled an appointment. At it I explained my struggles and she told me she could turn on the rate response function. After a good bit of convincing, she agreed to set it at medium low instead of low like she preferred. It has helped. There is notable difference in how my body responds, but it hasn't been enough. I still feel like an elderly person carrying a heavy weight. Especially for walking on stairs or hills. Honestly even though I feel better than before she turned the red on, I feel worse now than I felt before getting the pacemaker  

I have a follow up with the EP soon. I don't know what to ask for or whether there is help. It seems clear that they won't offer options and I need to be specific in my requests and push for what I need. But I do not know what I need. 
 

Any ideas?


10 Comments

Rate Response

by AgentX86 - 2021-02-11 22:24:36

What you need is an EP who knows what he's doing.  With Bradycardia that deep and pauses, of course you need RR. That's just dumb.

With your symptoms now, you need some serious tuning of the RR parameters.  Unless you have other serious health issues (disclaimer box checked) there is nothing that an agressive rate response setting will do but make you feel bad because of unnecessary high heart rates when it's not necessary.  With aggressive settings, it's possible for the pacemaker to detect motion in a car as exercise, for instance.  The heart rate doesn't have to be higher than what she's set anyway, just being able to get there faster.  It seems that there wasn't any rate control at all.

If you can't get any joy out of your current team, find another.  Rant off.

To get any meaningful response please provide more details

by ar_vin - 2021-02-11 23:43:40

There are a lot of posts from other runners, cyclists etc with Medtronic PMs with a lot of detail on the exact rate response settings to tweak to help you along. Try and search for earlier the Medtronic rate response posts. If you don't have much luck post here again and I'm happy to help.

You need to educate yourself on your condition and your PM to help yourself. It can be a steep learning curve! But you'll come away with how to better live your life with your PM.

 

proof of heart issues

by Tracey_E - 2021-02-12 09:10:16

Both a heart rate of 30 and an 11 second pause are heart issues! Big ones. The pacer wasn't optional. These problems don't go away on their own, no medication will fix it. Pacing is the only way to get the rate up and prevent pauses. With a pause that long, the heart can stop and not start up again. Please don't question the need or the haste. 

Pacing and pacing to meet your needs are two different things. Sometimes a stress test is helpful to see what the heart is doing on exertion. 

Know that if you are depenent on rate response to get your rate up on exertion, cycling is going to be a challenge because rate response in your pacer is based on motion and with cycling the pacer doesn't pick up the motion. Hiking, it depends how much you move. Running and weight lifting should be good. 

I prefer my rate response cranked all the way up. I get breathless sometimes on small exertions which is annoying, but it jumps right up when I'm working out, which is awesome, so I live with the inconvenience the rest of the time. It's normal to take some experimenting to figure out what works for you. Often it's finding a balance, there is no perfect setting. 

Been There

by Mike417 - 2021-02-13 18:16:25

Well, I had the same issues you have for a year on the Azure PM.  I could not do hikes over 2 mi, and any hill just wiped me out.  Going uphill was an issue.  The Azure only senses acceleration in one direction; it does not sense going up stairs, using a bicycle, an elliptical, or any exercise that does not involve swinging the left arm.  It did not detect when I would stand up and take a few steps (I have SSS, single lead).

In short, the PM is not physiologically suitable for an active person.  My doc selected this PM, saying they were all the same, evehn though I told him I was very active.  My research showed that a more suitable PM is the BioScience PM.  This PM has 3 accelerometers, and the response is also responsive to breathing.  I found out that within a year they can justify replacement if the patient is not well managed on a particular PM.

While on the Azure I realized that the practice I was beening seen had no experience with active/athletic patients.  I was going in every 2 weeks trying to getting adjustments.  So I switched to another practice.  They quickly got me set up on the new PM, making me a happy camper.

Mike

Thank you

by Cac331 - 2021-02-15 05:58:29

I appreciate all your responses. I went to the EP on Friday. The only thing he was willing to change was that he moved the upper sensor rate from 130 to 140. I don't think I fully understand what that means because what I had been told was my lower rate was 60 but I didn't need an upper because my heart doesn't have trouble at the higher pace, but I think I am misunderstanding something. Despite that the EP felt like everything was working appropriately.  it's an Azure XT DR MRI. He agreed that I shouldn't be feeling the way I do and the pacemaker should not be limiting my activity level. But he said maybe I had an arrhythmia or something else going on. So he scheduled an appointment for me with the cardiologist. I left the office discouraged. So I have been trying to find info to read more about the device to learn and understand what I can. 

Just a few thoughts

by Gemita - 2021-02-15 09:52:19

Cac331,

I am certainly no Pacemaker or Settings expert, but I do know that there are many members here who have Medtronic pacemakers, including me and who are able to live good lives, uninhibited by their Medtronic devices.  I have also learnt that although there may be better pacemakers out there for certain activities, the Medtronic pacemaker can, with patience and a good Medtronic technician, be adjusted to cope well with most activities, rather than having to change to a different pacemaker prematurely.

Unfortunately CAC331, it does take patience to get the settings adjusted for a particular lifestyle and to find a decent technician/doctor who is really listening.  And it will take you time to find your feet and to begin to ask those meaningful questions too which will help you to get it set up for your needs.

Yes an arrhythmia can cause a lot of symptoms and make it more difficult to exercise in any event, despite the very best pacemaker or settings, so a cardiologist will probably want to monitor you to look for these and if he finds an arrhythmia, he may want to treat it first.  When I am experiencing an arrhythmia, I really labour to carry out many activities.

So my closing advice, please do not get discouraged.  It is far too early to feel this way.  Initially many of us may have to cope with setbacks.  The trauma of the pacemaker implant needs to settle, your heart needs to settle, any new arrhythmia needs to settle, your pacemaker settings need to settle.  Some are immediately better, but others like myself needed longer (a few months in my case).

If you want to learn, just keep posting, preferably a new post for each new question, rather than adding a new question to your original/first post.  By doing a new post, more people will see it and be able to respond.  As you understand more, you will slowly be able to ask your team whether specific changes to your settings might help.  Have you had an exercise stress echocardiogram where they can monitor you while you actually exercise and then determine which settings need adjusting?

Good luck

 

Same experience

by runpacer - 2021-02-15 21:15:22

Since November of 2019, whent a pacemaker was implanted and one month later I had a cardioversion, I experienced the exact same struggle. I am a distant runner, much older, but post surgery I seem to have more problems while running with breathing, finding constant enduring energy levels and recovery. cac331, I will do 7 and 10 mile runs super slow, breathless with multiple times where I'm reduced to walking. The electrical physiological implant cardiologist worked on different formulas in the pulse/rate of the PM. Sometimes there was an improvement but it was usually short lived. I would return to have the PM adjusted over and over. Little seem to help. Some adjustments made things worse. Unfortunately and very sadly that cardiologist passed away. I continue with my medication cardiologist who has me experimenting with medication withdrawal and a new physiological cardiologist who checked numbers on the machine, said I was fine and he kind of brushed me off and rescheduled for me to see him one year from now. So far, little difference with the medication reduction... but I'm off medication after a week of weaning. It's Monday. Wednesday will be one week I'm off meds except for baby aspirin. So before surgery I was an aging runner slowing down. Post surgery, I slowed down dramatically, struggled with breathlessness, weakness and a general feeling of depleation because sometimes it feels like I am running with a bear on my back that has a grand piano on it's back. And now with the medication stoppage I am sleepy. So I understand the struggle. I hope I get a different electro physiological cardiologist or a sports cardiologist with whom I can work to find that right formula for better running and a greater quality of life. Perhaps you will get the proper formula to improve your performance while exercising. 

Medtronic Settings for Exercise

by frankmcw2 - 2021-02-22 02:47:14

It sounds like you are experiencing problems similar to mine after my Medtronic Advisa was implanted over 5 years ago. I had ( and still have) no other cardio problems other than bradycardia (10 second gaps with no heart beat) and blocked signal from the atrial to ventricle chambers. It took over 2 years and many cardiologists/technicians to find an adjustment that is effective for all my workouts, including running, biking, swimming, hiking, and climbing stairs. Many (most) cardiologists and trained Medtronic technicians are oriented to sedentary patients who are not able to exercise at a robust level. I was fortunate to find a technician in the Phoenix area who has been working with other athletes and he made an adjustment that keeps my heart rate at a high enough level for all my exercise, including biking. I have not had any other adjustment for 3 years now, and in fact when I go in for annual checkups I warn the cardiologist to not change a thing. I have put together a pdf file that illustrates how this adjustment works. You can give it to your cardiologist so that the adjustment can be made to your pacemaker. Just email me at paulafrankmcw@gmail.com and I will return an email with the pdf attached. Several of the posters on this thread have already received the pdf. Good luck, Frank

Data

by SNORTINGDONKEY - 2021-02-24 22:23:52

I was/am in a similar situation and a lot of folks that have responded to you have actually helped me out in understanding how to think about solving the problem. But I will tell you for sure that for the kind of demographic you are and what you do 140 is too low - I am 99.99% sure.
 

Secondly the only way to solve the problem is for you to do keep a lot of data and do a lot of research and also find an EP who is willing to listen to you. What I have discovered is that if you take data they are less amenable to simply blow you away. I am oan endurance athlete and you should check out my posts to see what I've gone through and get an indication of the kind of data I needed to keep to change minds. As a matter of fact the reasoning that I provided to my EP landed my case on desk of the erstwhile CEO of Metronic.

Fitness watches are your friend…Not sure if you already have one and captured data about cardiovascular performance prior to you landing in this situation and after. But you can show what used to be and compare that to what it is.

In God We Trust...the rest please bring data. 
 

ps. You do have both leads, correct?
 

 

Physical Activity Limitations after getting a pacemaker

by rodw - 2021-03-20 10:05:38

I was told recently by my electrophysiologist cardiologist that a pacemaker was needed for ongoing heart issues. I am a very active 63 year old and have declined at this time due to the physical limitations of getting a pacemaker. After reading some of the above comments it seems to fruther solidify my choice of not getting one. Just cant get my head mentally around losing the ability of doing the physical  activity that I currently enjoy. Yes I do understand the alternative but at least I will have better quality of life until that time

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