Pm settings

I posted a few days ago about pm settings and would ask again... Have any of you who have pm ... Asked if your settings are optimal for you? Or when the Dr. or whoever checks it... Says everything's working fine....you don't question any further....just would like some feedback....

11 Comments

A learning process

by Theknotguy - 2014-12-27 04:12:28

To be quite honest, I was too sick during my first three PM readings to question anything. After I got a little better and was able to go home I started reading posts on this forum, gained some education, and started asking questions. Also got some information from Medtronic and my EP and learned some more.

Since what I learned was specific to me, I asked my EP to changes some settings about five months in. My EP turned on Medtronic's APP setting saying the jury was still out on APP but it didn't hurt to turn it on. I noticed positive changes over the next eight months. At my
last two readings of my PM , I saw some good reports on my printout so my EP and I didn't feel we needed to make any changes.

For me it has been a learning process as well as a collaborative effort between my EP and myself. I'm one of the very fortunate people who has an EP who feels knowledgeable patients will take better care of themselves, follow his directions more closely, and be more likely to participate fully in their heart care. In spite of my heart problems it has been a very positive experience for me.

I hope this answers your questions. I also hope you are fortunate enough to have as good of an EP as I have.

my cardiologist

by wjs1954 - 2014-12-27 05:12:20

Is wonderful,,,,,
Always willing to try adjustments only thing according to her. Very hard to get it just right for s active young guy (60) so i have had probably 5 adjustments in the 9 months so far. Still think she is the best and between her and PM rep they will get it....

Hi Energy ( or do you have low energy ? )

by IAN MC - 2014-12-27 05:12:25

You have missed out one pretty important piece of information :-

HOW DO YOU FEEL ? The answer to this question really is a big clue as to whether the settings are optimum for you or not !

You sound as though you are a totally passive partner in the whole process and the PM and adjustments are something which is done to you rather than you being involved.

Only you know if you feel as well , or less well, since having a PM . If you feel less well it is possible ( but not certain ) that the adjustments aren't optimal for you.

Ian

Delayed response...

by Grateful Heart - 2014-12-27 06:12:14


...with the Holidays and all. Glad you asked again.

If you are feeling well, no shortness of breath, etc. then your settings are optimal for you. If something is not feeling right, then you should mention it.

Your settings may be good now and in a few months could need some adjusting......or not.

Like Ian said, go by how you feel. Questions may come up just because you want to learn more....and that's good. Write them down for the next time you see your Doc.

I hope you are feeling well.

Grateful Heart

Thanks

by Energy - 2014-12-27 07:12:23

For your input... good to hear from others...this is my 2nd pm... and I do find energy levels lower than usual..but then it has been the Holidays... so take that into consideration..
Seems my energy levels cycle, I was always high energy person.... Until pm experience..... now have to always check my schedule and activities and think " will I have energy for this?" When I read the comment on here that you may be told everything's working fine but is it optimal"? That caught my attention...

Also that it maybe fine and a few months later need adjusting...

When they put my new pm in this past July they said they would program it as the old one....

As for being passive I am anything but passive as I am always asking questions, reading and wanting to learn, research. But there are some things you don't know the questions to ask... That is why this site is good..

Have contributed the energy cycles to life with a pm...

Thanks for input....

I have to disagree...somewhat

by RDD - 2014-12-28 04:12:20

I am a year out from my first PM but have 25 years of experience with heart valve disease and the vagueries of cardiac medicine (and I am a retired MD). I believe that you can feel "OK" or "well" and your PM not be as optimized as possible. Actually, my real issue (and I suspect an issue with many others) is that sometimes a PM can be as optimized as it can get, but still not optimal for the individual because of inherent design features of the particular PM. This is a problem more for those whose exercise levels are quite high and need as much help from the PM as possible to maximize their cardiac output while exercising strenuously. It is even more complex than that...I have reprinted a comment that I made awhile back to someone who was concerned with damage to their PM from crashing while mountain biking:
{{ I am curious if you have experienced the same problem with biking that I have.....it probably depends on what brand/type PM that you have. My PM is a Medtronic ADDR01 which has, like all Medtronic PM's, only an accelerometer and so basically responds only to vibrations (footstrikes). It does fine while running, hitting it's allowable max HR, but while hiking up steep hills or biking uphills, there is not enough "shaking" of the PM so it thinks that I am not exercising and drops toward or to base rate. I can accomodate to this somewhat by firm and rapid "tapping" on the PM directly but this is not possible while biking, so hills are a problem that may require a PM change to solve. I'd be interested in hearing your experience with this Golden_Snitch on this site is your go-to person for advanced info on this subject. Good Luck. }}

The bottom line is that you can have a PM which can eventually be "optimized" within it's limits but not so if you want or need to go beyond it's design limits. In my case there are several PM's (not any Medtronics) that incorporate either a respiratory rate sensor or other method to determine just how hard you are really exercising,even if your PM isn't being bounced around as occurs with running.

Although I am personally cynical about today's motives in most medical practices ...in the US,at least... there are some cardiac EP's and reps who try and are capable of fine-tuning. However, in the biggest town in Idaho (still small by some standards) a dominant EP who does only PM work and has 1500 PM patients was still unaware and questioning of my particular dilemma until I brought him the readouts from my Nike Sportswatch/Tomtom showing how my HR (entirely controlled by the PM) dropped back down towards baseline when I was climbing steep hills and increased towards max when I was going downhill at a faster footstrike rate.

I was unable to get accurate info about just what the capabilities of my and other PM's were until I called the tech reps in their home manufacturing offices. Don't trust your local reps or docs to necessarily know the intricacies of your PM as well as the big boys.

Go out with a HR monitor and experiment with various activities (if you are sufficiently interested in maximizing your potential). Perhaps your "lower energy" isn't the best you can get. Let us all know what you discover.

Dennis



Very interesting..

by Energy - 2014-12-28 08:12:04

I will try this with HR monitor.... and I do not know the capabilities of my St Jude pm. that has been an issue as rarely see rep and am told even those in the EP office rarely see him? My cardiologist hasn't been clear in giving me info other than basic info of living with pm.
The EP explained well why I needed the pm but not the capabilities or as you say the intricacies or limits of my pm....
Plus they deal mainly with Medtronic and not St Jude's...
I have called the home office for some info...and as I said earlier just knowing the correct questions to ask has been a challenge.
Thank you for the input and will try HR monitor..

Wow

by Energy - 2014-12-29 01:12:47

is all I can say.... In the beginning I didn't know anything about a PM... and thought the Dr is the one with the education .....I did not go to medical school (were my thoughts)
I assumed they knew what was going on and I was certainly a willing student...
Well it has certainly been an education to realize little by little .... this wasn't the case..

Have excellent cardiologist ... but has been vague about PM info.... the EP same reputation... excellent.... but again the vagueness on what works for me individually...
The St Jude rep came in my room at the hospital just as I was going into surgery for replacement and he seemed very knowledgable.. But again I was drowsy getting ready for surgery and my husband was obtaining all the info he could at the time...
When I asked about the rep when I went in for my first check-up... They said they rarely see him....
I said " does anyone in this office (EP) know much about St Jude's? The answer was " we do mainly Medtronic"
I said" am I the only one in this area with a SJude device?? Oh no there are many.... Same vagueness...

I believe you are right ... To insist on seeing St Jude rep.... When I called St Jude main office I asked for the rep's in this area.... their response was to contact my Dr.

So continue to educate myself.... Although education does not give physical energy...
I really appreciate you input... It lets one know they are not alone!

follow-up

by RDD - 2014-12-29 09:12:29

It sounds as if you are following the path of most patients and allowing the establishment to direct your course...in general their advice will not necessarily be what's best for you. Sorry if I sound off-the-top cynical....but I am. If you had a Medtronics PM, you COULD NOT (as I can't) accomodate to exercise demands unless the PM was rapidly shaken, either by running or by rapidly tapping firmly on it. With a St. Jude's there is a chance that you might have more than just the accelerometer ....depends on the model. If so, you have a chance that it can be set to better work for you. But it sounds like you can't rely on your local docs and reps. Depending on what country and locale you are in, you may be able to DEMAND that the rep meet you for a setting adjustment. I would suggest that you prime yourself first by getting as much knowledge as you can handle about how your pacemaker works...use the web to start. Then call your main office tech rep (at least in the US, they all were VERY nice and helpful. The primary question you want to answer is if your particular PM has only an accelerometer or if it has any other way of determining how hard you are exercising and adjusting your HR accordingly. Good luck.

another follow-up

by RDD - 2014-12-31 08:12:19

The same vagueness will most likely continue if you speak only with a rep in your area. What you want to do is call the central office in your country (usually the manufacturing site) and tell them that you have some unanswered technical questions about your PM. You can get their phone numbers off the web. Don't take a "talk to your Dr." answer as sufficient...demand to speak to the most knowledgable person about the subtleties of PM operation. Then ask them the questions I previously outlined. Keep going back to the individual if you find him/her helpful and receptive after you have digested whatever info he provides.

I am away from my reference file for a week but I would be happy to provide you with phone numbers and names of the reps I talked to in the USA of many of the major manufacturers when I return home.

Don't give up on this if you sincerely want to maximize your exercise abilities...it will be a long uphill battle. The good news is that you have a chance of winning the battle if your St.Jude is the right one,as opposed to Medtronic (as I have) which cannot be corrected to perform adequately.
Dennis

Contacts ..

by Energy - 2015-01-01 09:01:41

yes, I would appreciate the information....
Please send when you are back....

You know you're wired when...

You know the difference between hardware and software.

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