Rate response

I don't see why further changes can't be made, but ...

by LondonAndy - 2018-12-02 19:56:09

... whenever I have tried (and I have only had mine 4 years) I have met with resistance by the techs.  I so wish that when I first got it, or after 6 months of life with it, I could tweek the various settings every week for a while until I understood what combination was if not actually optimal but as close to it as I could get.

I think there are various reasons why I have met resistance: a reluctance to change something that has been keeping me alive quite nicely (I am 100% paced following surgical complication), but I do wonder how much of it is that they are trained to be cautious with such a critical part of our functioning, and consequently don't want to 'experiment'.  I am also overweight, and also wonder how much of a factor this is in thinking (but not saying) if I lost some weight I would feel better.

I will be interested to see what those with more experience say on your question.  I should add that I think my pacemaker is generally doing great, and I am not worried about it.  Just wondering if i am missing out on 'better'.

Rate response

by Energy - 2018-12-02 20:08:38

I remember when I asked about rate response ( which was a term I learned about on this website..as I had no idea there was such a thing.. but when I ask and the PM nurse turned mine on... she did say without having it turned on would be like trying to drive your car in 4th gear..

I have asked and like you nurse says if everything’s ok why would we change it? I just want to be optimal...

what's optimal

by Tracey_E - 2018-12-02 20:21:19

If you can do what you want to do and feel good, then your settings are optimal for you. It's possible for our needs to change over time and the settings to need to be adjusted again, but if we feel good then there is no need to mess with it more and they are likely to leave it alone. 

Not having rate response on is only like driving in 4th gear if your sinus rate doesn't go up properly on exertion. Many have the pacer for other reasons so don't need rr on. 

PM Adjustments

by KonaLawrence - 2018-12-03 01:34:59

Aloha Energy,

Take a look at my comment about PM Adjustments.  It's all about Rate Response.  I doubt you need the kind of tweaks I did, but the job of the PM techs is to help you live your life the way you want, not what they guess.  Study up on the options and keep after them.  You should be able to do everything with a PM that you did before the PM.  Good Luck

https://www.pacemakerclub.com/message/33929

Rate response

by Lonestar - 2018-12-03 15:32:58

On a St. Jude PM with rate adaptive response, there are 7 parameters that can be programmed by the tech, three of them critical to enabling you to function well under exertion. My expereince so far with 3 different techs and a PA is that they are not well trained and/or expereinced in programming the rate adaptive sensor to give you optimal performance, no doubt in part because of the complexity of working with multiple variables, not only in the PM but also in the nature of your exertion. Most accelerometer sensors work in only one dimension (vertical) and only in response to movement by the immediate body part (chest). They won't do much for you in sports like biking (lower body) or skiing (side to side). This situation leads to the need for lots of trial and error and careful record-keeping on your part about your exercise and your heart rate each time your PM is re-programmed. If you are serious about this, you must use a Fitbit or similar to track HR and/or do your programming on a treadmill.

rate

by lyn1951 - 2018-12-04 18:58:30

husband also has dialated cardiomyopathy, so they have to keep his pacemaker turned down to 65, they are wanting to rest his heart muscle as much as possible. 

He is also a very active man, does not understand the meaning of slow down, although his breathlessness makes him slow down, i find i am always reminding him do the same just not a fast, or adapt the way you are doing it.  ie beekeeping, you do not have to lift the entire box of honey, just lift it out one frame at a time, duhhhh!!!!!, I can get very frustrated with simple things sometimes that can be adjusted so easily by putting that thing called a brain to work.

Rate response

by Energy - 2018-12-04 20:47:24

I have St. Jude and still learning... Lone Star you sound very knowledgeable about PM..and you are right about techs not knowing or explaining very well..thankful for this group