Adjusting pacemaker

I am a 46 year old female who received my pacemaker 5 months ago. I had 3rd degree blockage and at the time my resting heart rate was 46 BPM. I'm fairly active and I enjoy dancing 

Since my pacemaker, I have had 2 adjustments.   Initially my highest setting was 125 BPM , which was way too low. I was increased to 140 and finally 155.  I feel that this setting might still be too low because when I dance I get winded quickly, and light headed.  I'm wondering if it is because I'm a little out of shape and need to condition or if I need another adjustment. Was curious to the highest setting that's possible to be adjusted to.  


11 Comments

Heart rate

by AgentX86 - 2018-09-08 20:15:35

Could you do this activity to your satisfaction before you had the PM implaned?  If not, there is no reason to expect that you would be in better shape after.  Even if so, you may have lost the edge taking time out to heal. If you're out of shape, I recommend cardiac rehab highly.  It put me on the right track (perhaps too right ;-). 

To answer your question, the maximum heart rate for a healthy person is 220-age, so that would put you at 175ish, IF YOU WERE PERFECTLY HEALTHY AND IN SHAPE.  I don't think you can expect higher than 155, unless you're in really good shape and still can't do what you need to do. It doesn't sound like your heart is the limiting factor.

settings

by Tracey_E - 2018-09-09 08:27:12

 Most of them go to 180, a few go to 220. Ideally you want your upper limit to be about 10bpm over where you regularly get when exercising.  I get up to 175 to 180 so my upper limit is 190. That's not normal, btw, but it is normal for me. They set it there after a stress test showed that I get fast rates but it's regular and all my vitals stay good so my doc said it's ok. Those handy charts don't necessarily apply to us when we are paced so talk to your doctor, don't do math from a chart. I go by how I feel. If can talk but not sing, if I'm sweating but feel strong, my rate is good. Some days that's 130, other days it's 180. (again, not normal for the rest of the world, but perfectly normal for me, confirmed and approved by my ep)

Every time you hit your upper limit, it will show up on the pacing report so it's easy enough to tell if that's what's happening. 

Ask if your rate response is on. We don't typically need it with av block but sometimes they turn it on anyway just in case. Rate response senses that we are moving and raises our rate for us. It's possible that it's on and competing with your natural sinus rhythm, getting your rate up too quickly. 

We can get deconditioned fairly quickly between the time we realize there's a problem, get a diagnosis, get the pacer and heal. However, it's also not uncommon to take a few tries to get the settings right so don't be shy about going back. No two of us are alike so they start with a good guess and go from there. If it takes more than a couple of tries, sometimes the treadmill is a good option. Watch what the heart is doing real time, make adjustments and try it right away while they are still monitoring. 

Settings

by Dynear - 2018-09-09 08:42:11

Thank you for your responses.  Prior to my pacer I could dance all night long now I can hardly make it through one song without getting winded. I wasn't sure if I needed to build endurance from exercising more or if my setting was still too low.  Each time I went in for an adjustment, I explained what was happening and they would only raise my setting a little.  It has gotten to the point where I don't enjoy dancing anymore.

talk to someone else?

by Tracey_E - 2018-09-09 08:50:56

It soounds like they're just trying the basics without really listening to what you're telling them. If you are seeing a nurse or rep, ask to see the doctor. It also might help to do the treadmill so they can see what happens when you get so winded. Don't give up!!!! You will be able to dance again. This is fairly normal. Most ofices see primarily sedentary patients so us active ones can stump them. That doesn't mean give up, it means they have to try harder. And sometimes that means we have to push them and advocate for ourselves. 

Talk to someone else

by Dynear - 2018-09-09 10:39:06

Thank you TraceyE, since receiving my PM, I have had another stress test and they put me on the treadmill, that's when they had me set at 125. They saw that I topped out quickly and did the initial adjustment.  I will be scheduling another appointment.

PM Adjustment

by DAVID H - 2018-09-09 20:12:21

When you say "adjustment" are you focusing in on the response of your device?  In my history, the Doc. who made the best "adjustment" for me performed this procedure: This Doc's (not an EP) specialty was echocardiography. the crew he assembled was himself, a device clinic nurse, and a sonographer.  While watching the echo he would instruct the device nurse to change my PM settings while he watched the result on the echo screen. This went on for awhile as he barked instructions then, suddenly, both he and the sonographer shouted "ALL RIGHT!!" in unison. He achieved his goal of getting my right and left ventricles working as a team. Afterward, my exercise regime ( 3mi treadmill, 1 mile walking track, and 30 min on a "New Step" device) was quite a bit easier for me to perform.

Unfortunately, this Doc. retired a couple months ago!

David

by Tracey_E - 2018-09-10 09:41:25

That sounds like synchronizing the left and right ventricles of a CRT? They don't do that on a 2 lead because it only paces one ventricle. 

Don't Give Up

by heartu - 2018-09-15 17:19:59

I have not been on the forum for a while. I have had my pm for 3rd degree heart block since Feb 2010. In the beginning I felt much like you do in that I felt winded when exercising. Fast forward to now, Sept 2018, I joined a fitness club in May 2017 where I work with a trainer on strength training. We started slowly and progressed through now. I do 70 lb lat pulldowns, 20 lb dumbell chest presses, 30 lb dumbell rows. I also do 75 lb sled pulls and pushes, etc 500 meters on the rowing machine, core and balance training, etc. My heart rate gets up there. What is also important is what you eat/drink before, during, and after your activity. I have a sport drink with at least 20gms of sugar plus whey protein to sustain me during my workouts. That provides the energy I need during my activity, but I also need to eat properly after my training or recovery period. That makes a huge difference. I am so happy that I found a trainer who is whipping into shape and teaches me proper nutrition along the way. BTW, I am 62 years old . My EP tells me to keep doing what I am doing and wishes his other patients would exercise a great deal more.

Don't give up

by Dynear - 2018-09-16 08:52:42

That is both awesome and encouraging.  Thank you for sharing. 

Dance the night away

by Sharon M. - 2018-09-30 20:57:35

I’m also 5 months post-PM implant, and last week I danced the entire 1st half of a contra dance evening without sitting anything out (plus the 2nd half). Great stamina, I felt great, and I didn’t spend half of the evening worrying about the PM! Obviously, we all react differently. I actually don’t know what my upper settings are, but it’s obviously working for me. They tweaked things a month after implant, and that seems to have done the trick. But go back as many times as it takes. It’s their job to make it work for you! I love dancing and dance exercise classes, and it’s great to be able to do them. Keep it up, you’ll get there!

Rate Response

by vincep - 2018-10-06 02:36:05

I too am discouraged after having one adjustment, which did provide a margin of improvement, but not enough for me to be happy. 

Good news is I just saw my PM rep today, he raised what is called "Rate Response" to a higher level for me.  

That setting is to allow the accelerometer to increase your heart rate.  Mine was just increased to the highest of 4 levels for my PM.   There is also an "initiation" setting that will bring you up to that higher BPM rate quicker, which was an issue with me as well, I'd run out of steam immediately, so I hope to see that improved too.
I expect improvment, how much reamains to be seen.  I will try this weekend to go rollerblading again.

I am now determined to take accurate work out notes and log them in a log book with this second adjustment that was just made today. 

Either manuallly or with a Fitbit I will log pre exercise heart rate,,,,,,then how long it takes to reach optimum workout heart rate., duration..etc.

Your workouts dancing differ from mine I think.  You have more impact in your footsteps where as I glide to each new step with less impact, you should be better on that count. On the other side, my steps will be consistent through out my work out.  I dont' know if yours are?  They can set how long the heart rate will remain elevated at an apparent end of workout also, I think so if you have break periods, you may want to discuss that as well.
The big thing is getting a rep that will listen to your needs and to do that I think you HAVE to talik to your doctor or nurses with the serious concernt that your life is becoming very unhappy. then they listen. 

Good luck with it and let me know how it works out!  Sorry if I rambled a bit here it's 1;30 am time for bed! lol   Good night Denear

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