We can solve many of our problems IF...

I think we can solve many of our problems IF only we can understand all of the necessary setting parameters in the PM that is needed for our own cases. The problem is there are too many freaking parameters and combinations and way too confusing for each of the parameter for what it does. 1 wrong parameter or combination set can make you feel awful. I'm frustrated with the enormous complexity of the parameters and/or combinations. I'm new to this thing in my body (since March this year), and I tried to read and understand the parameters function and it's confusing as heck. No wonder I think my PM tech has no clue of what to do. It may be impossible (I'm guessing) for them to understand it all because for one, they don't understand what our problem is even when we tried to describe what our pain is, and two, they can't remember what they learn in class/training. So, sometime I think they just set the "nominal" value for the parameters or guess what the parameters should be. And the result, we continue to suffer with the settings ! Until we know exactly what we want the settings should be for us to feel better, or the PM tech or EP would continue to guess which may or may not solve our problems. Sorry for this long post. I'm just so frustrated and thanks for letting me vent.

7 Comments

Duke

by golden_snitch - 2013-07-25 04:07:00

I do understand your frustration as it seems that you are not blessed with the very best PM tech. However, I do not believe that it's necessary for us to understand each and every parameter and setting. This is the doctor's job. Our job is to ask questions and make sure we understand everything that is important for our health. But that does not necessarily imply becoming a pacemaker expert. Not all of the PM techs, cardios, manufacturer representatives etc. are idiots. In the 14 years that I've had a pacemaker, I have had both: some really skilled guys, and some who were rather "lazy" and loved all the nominal settings or automatic functions.

A forum like this is a place that people often only join because they have some kind of problem with their device. Consequently, when you read all the threads here, you sometimes get the impression that there is hardly any device patient who doesn't encounter problems. But I guess the truth is, the majority of device patients is doing perfectly fine.

All these nominal settings and automatic features were chosen because for the majority of patients they'll work fine. They have been developed for the average device patient aged 70+. Younger patients often need optimization of settings. But those younger patients make up only a small percentage. It comes to no surprise that especially at smaller clinics or offices the person responsible for pacemaker interrogations is not that experienced in optimizing settings. Also take into consideration all the different pacemaker manufacturers and models, and all those different parameters. I have heard cardios saying, oh, they are all the same. But that's not true, they sometimes differ greatly.

I don't know how good I'd be at optimization, if the majority of patients I see every day tells me they are doing great, and therefore nothing needs to be changed. I think, as a tech or pacemaker nurse or whatever, you can only be good at optimization of settings, if you see several trouble shooting device patients every day. This happens at large centers. But then at large centers you also see LOADs of patients every day, reducing the time you can spent with each patient to a minimum. Leaving the nominal settings or activating automatic features saves time. That's not exactly the doctor's fault.

I'm not a big fan of always blaming the doctors, technicians, nurses etc. In my opinion we very often forget to see a problem from their perspective. So, my strategy is to be understanding. I sometimes tell the doctors who do my pacer interrogation that I know that they do not have much time; that I know that they probably do not know my pacer model well (because they don't implant this particular one); that I saw all the patients waiting outside. But at the same time I very clearly express that there is a problem, and that it needs to be solved, and that I'll just keep coming back again and again until it's solved. And I usually also tell them that I'm willing to throw in my two cents worth and that I could call the manufacturer, if they don't have time to do it. And, last but not least, that I appreciate the job they're doing and the time they're taking. Yes, I pay them for that job, but still appreciation often works wonders! For me, this strategy has worked very well.

Best wishes
Inga

Thanks Ing!!!

by Casper - 2013-07-25 04:07:06

Hi Inga, as usual, thanks for weighing in on Duke's questions.

You make excellent points.

Duke..... hopefully in time, you'll be able to get this situation worked out.

Casper

patience

by Tracey_E - 2013-07-25 06:07:45

I understand most of the big stuff, I don't even try to understand the little stuff beyond knowing it's complicated. It's important to remind ourselves of this when the first adjustment doesn't make us feel better. This is why they like to do things in small increments, then try it out. If it doesn't work it's easier to go back where we were and try something else. This can mean a lot of trips back.

Inga, I have had the same rep since my first implant in 1994. My dr pretty much defers to him on all things settings for me. He is amazing, never gives up until I feel great again. The one time he was stumped- tweaked 5 or 6 times and had me on the treadmill twice didn't help much- he sent my records off and made me a case study so most of my current settings came right from the engineers that developed it. He has several people who work with him now. They do my checks sometimes but are all afraid of touching my settings! They call him if there's a question.

Tweaks

by Bostonstrong - 2013-07-25 09:07:37

I wish my EP had that kind if patience. He has tried twice to tweak settings with problems both times and finally just put me back to post op baseline which is fine for minimal activity but isn't working well for distance running. I can tell he is frustrated and wishes I were a sedentary older patient. I'm frustrated too. I'm a nurse practitioner so I understand the demands on his time, quick visits and all that. But I have to live MY life with this device not someone else's. I don't think he sees many active people and doesn't really know how to help. He is a nice person and I like him but wish he had some experience with adjusting settings for my activity level. My insurance limits me to his group so it's a bit of a problem. But I'm not giving up.

WE Are All...

by donr - 2013-07-25 09:07:48

...different. Especially when you get to age of the patient. We also are not true machines, even though we obey all the laws of physics & other sciences. We are defined by our genetic makeup, which, except for identical twins is different for every human wandering this Earth. Pile on top of that the fact that we operate in different physical & emotional environments that modify our behavior & it seems impossible that any two humans could even begin to have the same PM parameter settings.

Speaking as an engineer - it means that every physician working w/ PM hosts faces a massive multi-variable problem to solve to arrive at an optimum setting set for his/her patients. Fortunately, many of those variables OFTEN seem to be insensitive to effects of other variables & they have stumbled on a set that sorta, kinda, almost fits all. Then there are the rest of us - represented by a big slug of the denizens of the PMC!

Realizing that the PM providers come from the same human universe as the hosts, you get a spectrum of capabilities among those trying to solve our problems.

The result - frustrated hosts like Duke & equally frustrated medics like Duke's Cardio & Tech.

That's where the PMC members come in. A cloud of experience perfectly illustrating that when you get to human capabilities, the whole can easily be greater than the sum of the individual's capabilities. Why? Because of the reasoning capabilities of the human mind. Small ideas of one human can stimulate analysis in another to generate new & greater insight into a problem. That's what we do in a thread - stimulate one another to generate better approaches to other's questions.

The answer to Duke's OP is really an "All of the Above" comments. Buried in the comments is the essentially complete answer to his woes & the reasons therefore.

The bottom line sometimes is that you have to take the bull by the tail & generate the solution to your own problem to generate among those who treat us the corrective action needed.

Don

Thanks for all replies

by Duke999 - 2013-07-25 10:07:19

Thank you so much for your words of wisdom Donr, Boston Strong for sharing, TraceyE for being you, Casper for always being there, and of course Inga (Golden Snitch) for always taking your time to chime in. I started to remember each of your names by heart although I'm fairly new to all of you. I think each member of this PM club is an angel, in 1 way or another :-).
God bless.

Duke

Bostonstrong

by Tracey_E - 2013-07-26 09:07:30

Two tweaks is just getting started! It's a shame your dr gets frustrated rather than digging deeper for answers. Active patients are more work than sedentary ones, yes, but that doesn't mean they can write us off. My dr doesn't have other patients like me but he and my rep are great about doing research. I think it helps that both of them are runners and lead very active lives themselves, so they are supportive when I struggle to be active. It might be worth it to pay out of pocket for another opinion. Or maybe suggest to your doc where to look for answers. I know my rep (St Judes) has access to a database of case studies and has a way of discussing things with other reps.

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