Micra AV Self programming

Has anyone tried to obtain a programmer for Micra AV? After chatting with medtronic, it doesn't seem possible to do so with them. I've looked/looking into other avenues. I spent quite sometime reading all the Micra AV technical manuals, and my doctor/medtronic rep didn't really work with me as expected. It's not necessarily their fault. But with something like the Micra AV, I feel it is better to program it yourself if you are technical enough to do so. 

I even made a summary guide of all the notes I took to program myself here if people are interested in taking a look that also have a Micra AV for CHB: https://docs.google.com/document/d/1wysWi_pB7H-eHHnl5gB59tbWoVhAFT08jb3Pb2o5vKM/edit?usp=sharing


29 Comments

Suggestion

by ROBO Pop - 2021-08-05 15:27:24

Let me suggest before you do that you acquire the very best malpractice insurance available as you are going to want to sue the *&$%@ who programs your device, assuming you survive.

Your request is wrong on so many levels and no reasonable person would expect doctors or manufacturers to fulfill the request. You'd ve a danger to yourself and anyone else with a micra implanted

You've got to be trolling

by AgentX86 - 2021-08-05 15:45:08

Really, no one is this stupid. If you are real, may I suggest that you not jump off a bridge. If are really this stupid, you need to be told such important life-saving information.

Reply if you have something useful to add

by erichlin - 2021-08-05 16:07:24

Please only reply if you have something useful to add. I've specifically had my pacemakers in the past poorly programmed from DDD @ LRL 50 when my sinus rate when I sleep was routinely 40-45 bpm. Fully normal sinus. I did not realize this for 20 years. Then I finally changed it to VDD @ LRL 30. Saving me both battery and ensuring 100% AV synchrony, unlike before. I would not put any EP, or doctor on a pedastal. I've done my own programming effectively for years with my older pacemakers. 

FWIW, I understand the negative response from @ROBO Pop and @AgentX86. However, I am quite experienced and highly technical, and am looking for a response from like-minded individuals

Thanks for an excellent post!

by ar_vin - 2021-08-05 16:42:50

To the OP:

I commend the effort you've put into this and I further commend that you've chosen to share your efforts and learning with us.

Please do not mind the sniping and do keep posting!

We need more such efforts from technically minded folks to push the EP world to pay attention to their patients' needs. These devices are highly programmable but most implants get little or no tweaks as the EP community sees no financial incentive in doing so. From my limited experience most EPs are remarkably incurious and (rightly so) constrained by concerns about liability.

 

I did

by AgentX86 - 2021-08-05 16:53:45

You really do need to be told that amonia is "not for internal use".

No points for the atempt at recovering your troll.

Hint: There are technical errors in your short posts that  demontrate that you really do need help. No, I'm not going to help hone your trolling skills. 

Of corse EP's aren't infallable but even the dumbest could manage a better troll, though would probably be too embarrased to try.

Thank you Ar_vin, and...maybe I can gather a cohort

by erichlin - 2021-08-05 17:25:42

Thank you for the kind words. Agreed with your observation regarding EPs. They are great for second opinions, performing surgeries, but in terms of programming, that is typically either not done by them or they spend little time to fine tune beyond nominal settings targeted for a specific demographic. This concern is magnified since the Micra AV is newer and the EPs are not as experienced with tuning AM-VP vs your typical AS-VP. Combine that with a Micra AV needs FAR more tuning to achieve AV synchrony, and far more consequences if programmed incorrectly than a typical DDD pacer, and you begin to have problems for patients with CHB and Micra AV. 

I was wondering if we can even get a cohort together for frequent at home programming as long as the patient or their guardian/provider is technical enough to do so / video chat with their provider.

I think what @AgentX86 fails to understand is that the programming is NOT typically done by an EP. It is typically done by an EP tech and/or in my case, a Medtronic rep who DOES NOT have an MD. In fact, there were some nuances that I was aware of that I've chatted with medtronic reps that they are not aware of. And they are the primary programmers for my Micra AV. The EP just signs off on the programming.

Also, @AgentX86 , please point out what was incorrect. I am curious as to your technical expertise in this. 

Self-treatment is frowned on for good reason

by crustyg - 2021-08-06 06:53:13

I take your comments about who does the PM confguration in good faith - and it matches my experience.  The PM information available to EP-docs is a lot less detailed than is available to the vendor-reps - and probably the biggest gap is the information about 'what is the typical effect of changing parameter <x> on any given patient'.  *Some* of that can come from the vendor but in practice most of it comes from practical experience.

The biggest drawback to self-diagnosis, self-medication is the lack of experience.  French's Index of Differential Diagnosis was fantastic reading back in the day - and almost every cluster of symptoms ends up as 'syphilis' - which is on the way back where I live, even tertiary syphilis!  What experience adds is a) how common is the disease that *might* be causing this sympton, b) how well does this fit in with the other symptoms that the patient has?

OK, so to self-programming: lack of experience really matters here too.  DIY leaves you without the cautious voice of experience 'If you change <x> then there's a risk of <y> which is much higher in *you* than other patients.  If you've never seen far-field over-sensing would you recognise it and adjust the pacing parameters appropriately?  Do you have complete confidence in your knowledge of pacing voltages/pulse-widths/lead impedances and the implications of change?

I've nothing against reading the PM manuals, sharing some PM settings, encouraging athletic folk to get their PM 'tuned' for them.  I have also suffered the emotional struggle that the box inside me that controls a lot of my life is controlled by other people, but I think it's wiser to get my box adjusted in concert with them (and their vast experience) than assume that I've seen it all and know all of the potential consequences.  All of the really clever doctors that I know seek out their peers when they feel unwell and don't self-treat.

Many years ago when I was young and smart I decoded a proprietary comms protocol for a lab analyser and reproduced it to eliminate the vendor's unreliable controller.  All of the PM vendors rely on security-by-obscurity for their programming consoles, and the IT world's experience is that this usually means that the protocol isn't very secure.  I would bet money that there are smart folk out there who could crack any of the vendor PM comms protocols - great challenge to work on, but of what value?  Knowing how to make fulminate of mercury is cool but what do you do with the end product?  It's too dangerous to have around, and actually getting rid of it will probably take off your fingers or blind you.

Life is all about Choices.

 

Self treatment with known endpoints

by erichlin - 2021-08-06 11:51:04

Agreed that experience generally will reveal things that you may not realize ahead of time via theory.  There will be unknown unknowns to self programming that experience would have classified as known unknown or known known. A good example is playing with blanking/ refactory, AV delay variables which can lead to things like 2:1 and wenckebach. I 100% agree with you.

What I would like to change are things that I know are wrong to something that I can KNOWABLY test is better.  As pointed out in my aforementioned message, I was left atriallly pacing when I slept at night even though my sinus is normal. That was wrong. I changed it by simply changing myself to VDD mode. Another way to do this would have been to leave at DDD @ LRL lower than the sinus. This is also easily testable. 

In relation to the Micra AV, the changes that most self-educated patients would seek are for AV synchrony (and secondarily, rate response). It is EASY to tell when AV synchrony is off. Check the p-wave, and watch for an AM marker. If this isn't there, you can tweak the settings and try again. You are literally just playing with windows to match the AM to the p wave. When that seems good, perform the test while standing, walking, etc. (BTW, the reps and the doc ONLY test for AV synchrony for the Micra AV when you are at complete rest lying down, so I would actually say experience here is weak because it saves them time. AV synchrony at rest will capture most 75 year olds, but NOT an athletic 35 year old) . This also fulfills the ability to test after that you have corrected a wrong to a right. 

Now there are some changes that I could ask for a second opinion, but typically EPs don't tweak anyway. Such as sensed AV delay. This is typically left at nominal unless there is a problem. But generally for these settings, I agree that it may be better to self educate and ask for a second opinion before making the change. With a second opinion, you may learn about 2:1 or wenckebach or setting a longer delay to allow for intrinsic capture even if longer delay is less physiological. 100% agree with you here for these that don't fall under "clearly wrong, and testable".

I'd also like to point out that while experience is great....From a practical standpoing, EPs do not use their experience and typically perform the bare minimal changes leaving you at close to nominal settings. And that typically, people on pacemakers do NOT do well in the long term, so the lindy effect of abstaining from self-knowledge is poor here. 

While docs are generally well-meaning, they simplly do not have skin in the game. You will try your damn hardest to ensure that the aforementioned wrong, but testable settings to the right values simply because you have skin in the game.

And to conclude, the spectrum of self-testers is large. Some are more technical, others less so. But that does not mean that we should dismiss self or frequent testing. While I agree that traditional TV-pacemakers do not require this, and I simply went in weekly to self-program to what I desired, the story is 100% different with a Micra AV! I cannot see how you can tune a Micra AV WITHOUT at-home, frequent testing. Simply dismissing self-testing with the prior that experience trumps patient knowledge, dismisses a key tool that cannot be done in an office setting. The office visit is poor for both a) feedback for testing is too long. This is why the field of physics is seen more as math than other fields. The time for results is simply faster. b) you cannot test with different environments in the office, such as sleep, or exercise. Accepting these limitations instead of expanding the toolkit for the Micra AV specifically, imo, will leave you with a lesser (or equal to) settings than at home, frequent testing/programming.

We are all subject to our experience

by crustyg - 2021-08-06 13:12:09

I struggle to see why a young patient like yourself with CHB would want a Micra-AV, and perhaps your posts make my point that it's not really suitable for you in your condition.  The literature that I've read suggests that it's a very quick and convenient, fit-and-forget solution for acquired CHB in the elderly (my age [!] and above), with some clever software that is positioned as being so advanced that no additional EP-tech adjustment is needed.

I also struggle to understand how anyone with a normal SA-node would be atrially paced even with a dual-chamber TV-PM unless configured by someone without much thought.  Is the Micra-AV your first PM?

From my limited perspective the Micra-AV *appears* to be a product designed for a particular market that has turned out to be smaller than anticipated, so is being promoted into areas where its limitations become a problem.  But that's just my opinion.

@crustyg, I should add some context

by erichlin - 2021-08-06 13:37:21

I had a congenital VSD repaired when I was 7. Side effect of that was a pacemaker. I've since had 3 pacemakers. I am now 35. one of the leads was oversensing, so I needed to change my leads. I had 3 leads (one 29 years old, the other two 19 years old). The older lead was initially from a single chamber pacemaker VVI @ 83 bpm (not dual chamber probably because I was a small child at the time). That lead was fractured when I was younger, so it was left abandoned. 

So I was faced with needing a fourth pacemaker and (possibly) lead extraction. Ultimately I decided on removing all the leads and implanting a Micra.

Now onto why. The more pacemakers you have, the higher your infection risk. (Most estimates are double the risk with each pacer) . Not to mention, I already removed my leads, so putting new ones in isn't necessarily desirable. After getting second opinions from top doctors all around the world (which is what I believe EPs are good for), I had a list of pros/cons. Suffice it to say, I explored everything. I read probably over 800 clinical trials as well. EPs conflicted in opinions, but all recommended that I perform lead extraction instead of leaving them in there. I even considered other things like HIS Bundle / LBBP (not recommended when you have had previous VSD),  even crazy things like WISE-CRT + micra. 

With all that said, I decided on the micra for a few reasons: a) lower infection risk since that seems to double with every pacemaker you have b) give my vasculature time to recover, I can still always get a dual chamber again in the future c) hopefully tune the micra av for my needs. If I cannot, and my LVEF from echo gets much lower, then I will reconsider d) i have reliable escape beats e) i have been on vvi @ 83 bpm without much consequence when I was 7-17 years old, so I can probably handle some lack of AV synchrony f) having had a VSD before, if lead extraction damages the SVC, it is almost a certainty that I will die unlike a person who hasn't had an open heart surgery before g) hope for future technology (dual chamber leadless, biological pacemakers - both of which I contacted primary researchers in the field and had video chats with)

The Micra AV is not as advanced as people think in terms of the ability to maintain AV synchrony. It requires quite a bit of massaging. But yes the literature/marketing may be targeted as some Asimov tech. 

I ALSO struggle to understand why I was atrially paced for nearly 20 years basically with a normal sinus and dual chamber TV-PM. But, is it really a mystery? Recall that I went through many EPs over the years, and NONE had decided to change that. It is only when I got myself a sleep tracker that I noticed that my heart rate was flat at 50 bpm at night with no variation. That was my clue to something was off. So again, experience without incentive does not win always. I think the real reason is because the general demographic is 75 years old for a pacer. So given that, consider CHB and normal sinus for a 75 year old. As an EP, you would either a) never have their heart rates go under 50 bpm as that is considered brady b) if their heart rate goes under 50 bpm and that is NORMAL sinus, you are still worried about syncopy so you rather atrially pace them ANYWAY. Once again, the nominal settings work for that crowd, but not necessarily for a growing teen like I was. Experience without incentive works well for the general.

Agreed that I would not recommend someone that is 35 years old who is athletic and is getting their pacemaker for the first time to get a Micra AV. I think perhaps they would be most suited for a TV-pacer (although perhaps. Micra AV can still be considered). In any case, that is not me. This isn't my first pacer. 

Quite a journey

by crustyg - 2021-08-06 17:12:11

And it sounds as though you've not had the greatest of pacing attention.

Mind you, pacing the RA at 50BPM when your true resting HR is perhaps 44BPM isn't a huge problem - just wastes a bit of battery life.  It's not going to cause remodelling, I'd really doubt that it would cause difficulties getting to sleep, and it would have been easy to spot on your PM reports - but it doesn't sound as though you had those.

If you have a moment, please update your profile.

There are more young, athletic folk here than *perhaps* you realise, I don't know.  I think many of those who take the trouble to find this forum have had some personal experience with '*they* are doing things to me' and have been successful at changing that into 'I work with them to get the best for me.'  Apologies in advance if I've misunderstood.

No misunderstanding, your skepticism is appreciated!

by erichlin - 2021-08-06 17:28:37

"It's not going to cause remodelling" => I don't know if we can claim this with significant certainty. The sample size for young people that are followed for 50 years with a pacer, normal sinus, and being paced at night atrially while having a sinus rate lower than the pacing rate is probably not statistically significant to make that conclusion even if that sample size existed. pvalue probably too low.

Correct, it was easy to spot on PM reports , but that is with hindsight, which I believe is the problem. Doctors immediately agree with me to make the change, once spotted. The thing is before that is spotted, the effort is not always made. And sometimes, they accept that "good enough" is okay without an effort to improve as with my current Micra AV. I am currently requesting a holter monitor as my doctor is assuming that my current heart rate at night with the Micra AV (85 bpm) is correct. And I am telling him that I do not believe so, as my former sinus was 45 bpm. We'll see what he says. But I rather have some evidence before assuming.

Yep, just updated as of this morning my time. Thank you.

Agreed that working with the provider is a great happy medium. However, that does not solve the problem for the Micra AV for someone like me, where in my opinion, NOT having at home, frequent programming to fine tune the parameters for someone is limiting the toolset, which imo is necessary. Thus, while that is a happy medium for most TV-pacemakers for most people who stumble on this forum, and I agree it is NECESSARY, it is NOT sufficient for me.

Thanks for all your messages @crustyg. I hope I don't sound offputting in anyway

 

RA pacing and remodelling

by crustyg - 2021-08-06 18:24:01

I wasn't worried about sample size/population size when I made my comment about RA pacing: as the RA pacing wire is almost always in the RA-appendage, it's very close to the SA-node - so the electrical activation is physiological.  In any case the RA is quite thin, so there's not a lot of muscle to develop.  And for someone with CHB that's as far as any activation is going to go. Tachycardia-induced cardiomyopathy in the RA/LA - not realistic, as you need to pace much faster then say 80BPM instead of 45BPM, even 24*7. 

The big concern is pacing the ventricles from a non-physiological point/direction - RV-apex instead of the top of the bundle of His.  Not relevant within the context of over-pacing the RA in a person with CHB.  And it's not nearly fast enough to produce damage to the ventricles if the PM is also delivering RV pacing at that rate: but if that had been the concern then one would talk about vent-overpacing, not concern about RA pacing with a normal SA-node.

Complexity theory, computational tractability, and unknown unknowns

by erichlin - 2021-08-06 21:02:41

I agree with your accessment on unlikeliness for remodeling, but I won't say I know for sure. Furthermore, there are other problems that I would argue makes RA pacing with a normal SA-node still a concern , and hence we should NOT dismiss.

While we can model many things through theory and narratives, in the end, we would need to test to verify our theories. We learn via disconfirmation. And I would argue that we do not understand the long term effects of RA pacing 9 hours a night every night for the entirety of a person's lifetime. Perhaps there is no remodeling, but could it trigger a sick sinus? Maybe? While the electrical activation is close enough to be physiological, the pacing itself is non-physiological by definition. Physiological isn't just "point" of activation. Therefore, the concern about RA pacing with a normal SA-node still exists due to purely "i don't know", which imo is a fairly legititmate response for any scientist. We cannot just trust theories. I present the billiard ball analogy as a testament to why it is even likely computationally NP -hard for whether RA pacing is "safe".

"If you know a set of basic parameters concerning the ball at rest, can computer the resistance of the table (quite elementary), and can gauge the strength of the impact, then it is rather easy to predict what would happen at the first hit. The second impact becomes more complicated, but possible; and more precision is called for. The problem is that to correctly computer the ninth impact, you need to take account the gravitational pull of someone standing next to the table (modestly, Berry’s computations use a weight of less than 150 pounds). And to compute the fifty-sixth impact, every single elementary particle in the universe needs to be present in your assumptions! An electron at the edge of the universe, separated from us by 10 billion light-years, must figure in the calculations, since it exerts a meaningful effect on the outcome."

To conclude, the human body has significantly more fanout than the billiard ball analogy. And thus, like the butterfly effect, hard to predict, especially as you project out the timeframe to 50+ years.

 

 

 

 

programming yourself

by new to pace.... - 2021-08-07 11:21:24

I was wondering if you program this yourself.  What happens if you forget to save it?  What recourse do you have incase something happens.  Isn't it better to have another program it so there is a record. 

 How often do you plan to reprogram this?

 Also i have a pacemaker and it has not been changed in 2 years.  Knock on wood!

new to pace

Store

by erichlin - 2021-08-07 11:28:40

Plenty of ways:

1) You manually record previous values

2) At the end of a session, you can print the changes

3) Download from unit and store after.

I don't think this problem makes it necessary to need another person to program with you.

I plan to reprogram perhaps bi-daily in the very beginning and then do mostly followups every month after it is tuned. With a standard pacemaker (not Micra AV), I think just self educating and going in and programming with the tech is fine. That is what I used to do. I'm referring ONLY to the Micra AV that needs more babysitting.

New To Pace

by Marybird - 2021-08-07 16:30:06

To make an understatement, though I'm sure you realize this,  I don't think this "do it yourself" pacemaker adjustments would be recommended to the greatest majority of us mortals who don't know all that much about our pacemakers anyway and just the basics ( if that) about the settings- I'm including myself in this group, of course. I mean it's a good idea to know about your own settings, if you can, just as it's a good idea to know as much as you can about anything that directly affects you, but changes in cardiac device settings is really a matter between you and your doctor/device technician. I can't even imagine being able to tweak my pacemaker settings, I'd end up one big mess, for sure.

My pacemaker settings haven't been changed for two years either, they were last set at my 6 week post-implant checkup by the EP. He came in with the pacer rep at the visit, and directed the changes he wanted made, and they've worked well for me for over two years. Of course, I am the proverbial 70-something old lady and the pacer settings are probably set with the expected activity levels of this age group, but they work for me ( though I am fairly active). If I were younger, was a marathon biker/runner/etc... , worked out extensively or had a physically demanding job, perhaps I'd have been looking to adjust pacemaker settings in the two years since the last time, but I'm happy with them.

So if you're feeling good, pretty much whatever you do, you probably don't need pacemaker adjustments either.

Mary

Let me be more clear

by erichlin - 2021-08-07 19:59:53

It is less about self programming, and more about at home, frequent tuning specifically for the Micra AV. All other pacer devices are easy to tune , and can be done with the doctor with some self education. If the Micra AV had a doc come to my home while i slept, etc, a few times a day for the first week to tune, then i'm fine with that too. It's more about the frequent programming to tune the Micra AV, as it is very different from other devices that are electrically sensing the atrial

DIY

by Gotrhythm - 2021-08-07 20:29:19

Frankly, I'm envious. I wish I knew how to program my pacemaker.

My (healthy) heart has a decidely untypical reaction to being paced, and I limped along for years with settings "appropriate" for my age. Those age appropriate settings rendered me unconscious a couple of times. Luckily for me, I did find an EP with real programming knowledge. Someone who could go beyond "cookbooks" and create the exact programming recipe I needed, I have seen the quality of life difference that perfect-for-me settings can make.

If having a pacemaker has taught me anything, it's the importance of understanding your condition and knowing as much about your pacemaker as your brain capacity allows. Then using that knowledge to advocate for yourself. What you're talking about is kind of the ultimate in taking responsibility for your treatment outcomes. If you can program your own pacemaker, I say go for it. I'm too ignorant to join your "cohort" but I'll happily join your cheerleader squad.

And as for the objection that you shouldn't "operate" on yourself, well, why couldn't the reprogramming be done with a professional overseeing the work?

 

"with a professional overseeing the work"

by ar_vin - 2021-08-07 21:01:09

Unfortunately the "professionals" have no financial incentive to work this closely with *any* patient. Further, in my experience, *most* physicians (EPs included) are not very intellectually curious. Lacking both financial incentive and intellectual curiosity EPs (and device techs) are not much help to those of us that seek better PM settings adjustments to suit our lifestyles.

The OP here is at one end of the spectrum; it appears the Micra AV needs much more specific settings adjustments. Many others (younger and physically active) have similar needs that go unaddressed by their EPs. My guess is that as devices get more "featureful", the "market" for these settings adjustments will only grow. It remains to be seen what kind of "offerings" wil appear to meet this potential new market. EPs will only ignore this market at their peril.

 

 

agreed

by erichlin - 2021-08-07 21:38:59

First thank you @Gotrhythm . I understand the feeling where you have to convince them to do what you said. Advocating for yourself just for them to realize something is off.

And I agree with @ar_vin where the EPs think if you aren't overly symptomatic, the nominal settings are typically good enough.

And also agree that more featureful pacemakers that require more tuning like the Micra AV, will require more adjustments.

Erichlin

by Gemita - 2021-08-08 04:54:35

I am still trying to decide what the main purpose of your post is. I am unclear if you genuinely want feedback from us, or whether your post is really all about you, and putting your views out there.  I see you are a prolific writer on many other forums.  Do you genuinely wish to help other members with a Micra AV find solutions for their symptoms by teaching them to self adjust their settings to suit their personal needs, or are you seeking recruits to join you on your journey of self programming, self fulfilment?  If it is the latter, I believe, as a matter of courtesy you would need to seek permission from the owner of this Club, if you haven’t already done so, before you spread your theories. 

While I would agree doctors should not be placed on a pedestal and long gone thankfully are the days when patients had no part to play in their own health care, the idea of being responsible for my own pacemaker adjustments at 72 years of age would fill me with some concern.  Ideally I would need to have considerable knowledge of both my pacemaker and my health condition(s) and of the treatment in the way of medication/surgery I am getting.  This is not just about adjusting our settings.  That is with respect the easy part.  The harder part will be about managing any sudden adverse symptoms from any settings changes we may make, or needing to adjust the doses of any medication we may take as a result of making settings adjustments.  Then there is the small matter of security and someone getting hold of your programmer when you are asleep and causing harm.  There are more questions than answers I would suggest.

We would ideally need to be medically trained and capable of helping ourselves should we get into difficulty following any settings changes.  How many of us would really be happy to take on this responsibility.  I certainly wouldn’t.  Most of us need the help of a good EP and/or cardiologist to guide us and to give us the benefit of their considerable years of experience and knowledge.  We cannot all be experts in the field.  If we are unhappy with our doctors, then we can always find another.  There are still some excellent doctors out there who show considerable understanding, patience, who do not wish to over treat their patients but to work with them.  I have met such doctors.  I think we would all do well to try to get our doctors on our side by using our powers of persuasion.  No one can move forward in isolation, we have to find a way to take our doctors and technicians with us for a successful outcome.  It sounds to me as though you need to do more work in the area of persuasion Erichlin.

This is a support group, to help each other to understand all about our pacemakers and settings, our often complex diagnoses and range of symptoms.  Above all I believe this forum is to help members to communicate better with their doctors so that they can improve patient outcomes. Our role is most definitely not to encourage members to take on their own pacemaker management 

gemita

by erichlin - 2021-08-08 12:02:17

I understand where you are coming from. Let me first lay out your points so you can see I understand what you are saying.

1) Settings are easy to adjust. The side effects of setting changes are unknown without experience as it relates with medication, etc

2) Security of programmer being stolen, etc

3) Persuade your doctor better

Let me know if there are other points you have brought up, but I'll address each of these in turn.

1) I have already mentioned to crustyg that some settings are best left at nominal or whatever your EP has programmed. The ones to tinker with are the obviously wrong ones that are testable. That is my dual criteria for a change. See former discussion for examples.

2) Agreed. This is a tradeoff that one must accept with their own programmer. Just like someone can also come and do other things to our house in the middle of the night. 

3a) I have tried to persuade my doctor and failed. Lacking this tool, what else do I do?

3b) Also as I mentioned, this is not merely just working with my doctor. I agree we should. This is about programming more frequently for more particular individuals (NOT all individuals with a Micra AV), specifically with the Micra AV, which can really only be done at home. It is a unique device. I know of someone who already has trouble getting their Micra AV to work for them, and now has to resort to getting an epicardial pacemaker and getting surgery again. Maybe they can prevent this using what I am suggesting.

Finally, full circle to answer your first question:

"Do you genuinely wish to help other members with a Micra AV find solutions for their symptoms by teaching them to self adjust their settings to suit their personal needs, or are you seeking recruits to join you on your journey of self programming, self fulfilment?"

-I am genuinely wishing to help other members who have struggled with their Micra AV, and are now stuck with getting another surgery to consider maybe that we CAN tune our Micra AV to work with us, but only with at home, frequent programming, which is NOT possible in an office visit. I have always been in favor of discussing with your doctor. That is NECESSARY, but not SUFFICIENT as I have mentioned earlier.

I see the possibility that my post may be misinterpreted as "I like to play around with pacemaker. Join me in my quest". It should instead read "My Micra AV is not working well for me. If nothing is done, I cannot function on this, and will need to go in for surgery to change my pacemaker. This is my fourth pacemaker for over 30 years. I am still young. I am at my wits end and this is my last resort. Please, anyone else who is in a similar situation with their Micra AV? My sleeping heart rate on Micra AV is 89 bpm, but my standing heart rate is 58. And most of the entire day, my heart rate is just 85-95, almost no change. My previous TV-pacemaker had my sleeping at 40-55 bpm when I slept, and around 55-115 bpm throughout the day, and up to 185 bpm with activity with effectively 100% AV synchrony. The Micra AV is not doing the right thing clearly. Doctors have said this is the best they can do without even trying because I understand the Micra AV possibly better than they do. And the only way to simulate all environments is to truly program it yourself at home with your own incentives to save your own life."

I didn't know this forum had a key mission that excluded my discussion to help a particular individual who has no more remaining options and this is his last hope. If so, I can stop talking as per your request. Please let me know.

Erichlin

by Gemita - 2021-08-08 17:45:53

Dear Erichlin,

I can see that you are sincere in wanting to help others and that your post is authentic.  Yes you came across as being rather arrogant and a more humble approach would perhaps have helped but I am also sorry for having misjudged you.  No I have no wish or right to silence you or to prevent another Micra AV member from seeing your message.   Healthy debate is always welcome on this forum.   

My main concern is for the safety of other members if they should choose to follow in your footsteps without the support of their medical team. We cannot play with others’ lives by encouraging them to take control of their Micra AV pacemaker if they fail to make progress with their own doctors.  That would be a step too far in my opinion.   Instead we need to encourage members who are dissatisfied with their Micra AV to return to their doctors time and time again, if necessary, and to take someone with them to continue a dialogue or to ask for a referral to see another doctor until they get satisfactory results.  And they will with persistence, gentle persuasion and a level of humility.  You need to work on this too my friend.  It may help your doctors to help you and also to help them to feel less threatened by your knowledge about your pacemaker and condition being treated.

I do not think members should necessarily go into any consultation armed with a long list of questions about settings.  The consultation is really about our well being and symptoms in relation to the lifestyle we want to enjoy.  I know my EP is completely put off if I enter the consultation room with a long list of questions on settings.  

Yes my main concern would be about the effects of changing settings and then developing symptoms, particularly without the prior knowledge and support of a doctor.  I have already experienced the effects anti arrhythmic meds can have on pacemaker function, so I would be extremely worried about changing any settings in the presence of certain meds.  I wouldn’t have the confidence to go ahead with my own settings changes and I certainly wouldn’t feel confident to advise others to do so.  However I am not in your position, since I have a dual lead pacemaker for Sick Sinus Syndrome (tachy/brady + history of syncope) and my pacemaker is working well for me.  I too am surprised you went for a Micra, but I understand completely your reasons.

I expect you have tried a treadmill test with your manufacturer technician to try to optimise your settings.  I know many of us find this test invaluable to find the right adjustments

Unfortunately to my knowledge there aren’t too many members with Micra Pacemakers in the Pacemaker Club.  You are a small but expanding group.  All I can say is that I wish you every success with your challenge.  If anyone can succeed it is you and perhaps when you are happy with your settings and your heart rate stabilizes you can proudly return to your doctors and show them what you have been able to achieve and they will be happy and willing to listen to you and to work with you in the future.

Long winded content free posts by Gemita are off putting!

by ar_vin - 2021-08-09 03:07:24

Gemita,

This is the second time I'm forced to write to you about your posts.

The OP started a genuine conversation about a topic that deserves to be discussed at length. There is no reason for you to resort to calling him "arrogant" for his efforts at educating himself and others.

If one is not interested in this topic they're welcome to ignore the post. There's no justifiable reason for you to insert yourself into a discussion where you add absolutely *no value*.

Your efforts at keeping this forum going are appreciated but there's no reason for you to assert that only you have the "right answer" to all questions relating to PMs.

 

 

 

ar_vin

by Gemita - 2021-08-09 06:01:36

I believe Erichlin and I have understood each other without any input from you.  

You are an extremely rude and intolerant person and your posts haven’t gone unnoticed.  Your praise is hollow indeed and I can well do without it. 

I certainly do not assert I have all the right answers.  This is your interpretation.  My intervention in this thread was purely to draw attention to the dangers of taking direct action to change our settings, for whatever reason, without guidance or support from our doctors, particularly in view of Erichlin’s suggestion of maybe gathering a cohort to join him from this Club.  

Since you have made your hostility towards me so public, I would add that I initially considered Erichlin to be a troll and considered deleting his post which is why I was also guilty of showing a certain amount of intolerance towards him.   Enough said

Civility

by erichlin - 2021-08-09 16:05:39

Thanks @ar_vin and @Gemita!

@Gemita , It is my fault for not providing context earlier. In the future, I will clarify my background and provide context. I apologize for not doing that earlier.

Re: Cohort

I should have clarified (I apologize @Gemita). The cohort was mostly to see if there are others who wants to have a separate discussion together that have a Micra AV and their settings are not working well for them. Perhaps we can gather enough of us to merit a case study because this is our last resort.

To defend @ar_vin:

 @Gemita , I apologize as well for not stating earlier the type of discussion I wanted. I understand the points you mentioned, which are namely:

1) Watch out for side effects

2) Talk to your doctor more with better tact

3) Others should be wary of #1 and #2 when reading Erich's post.

While on the surface these 3 elements seem useful, I agree with ar_vin here, that they do not add real value to the discussion at hand.

The reason for this is because these 3 things are fairly common sense to anyone that is an adult. If the reader was under 18, I agree. But the general audience here (I believe) has a level of experience that allows them to a) understand that doing things yourself without a doctor may have consequences, b) that you should work with your doctor more, and c) that anything on the internet should not be taken as medical advice. 

What would be valuable would be:

1) I have a Micra AV. Here are some things you may not have considered.....

2) Here are some ideas on how to obtain the ability to program at home.

Thank you and let's all be more civil on here. This is my first time on this forum, and it seems the general audience lacks respect and/or presumes immediate negativity instead of positivity. "Erich must be a troll" instead of "Let's see why Erich is asking this by asking him some questions. He must have good reason". Imo, if I have nothing "extra" to add (beyond things that are "common sense" to everyone), and I feel negativity, I don't respond at all. If I have nothing "extra" to add, but I feel I want to see the discussion continue, then I'll add "I am interested in this discussion. Please continue it!". If I have something meaninful to add that most of the audience would NOT have thought of themselves, then I reply.

Thank you everyone! Let's keep this civil and meaninful!

Civil discussion

by ar_vin - 2021-08-11 21:50:52

@Erichlin started this very useful thread for which I applaud him and I wish we had more such discussions. I'm NOT suggesting that *every* PM recipient attempt doing what @Erichlin is seeking to do. I AM suggesting that more members research their devices, their diagnoses and lifestyles and post their experiences and learnings here.

It's unfortunate that Gemita feels slighted by my direct feedback: she does an excellent job keeping this forum functioning.

Let's hope we can have more content rich posts so we all gain from each others' experiences and learnings.

I harbor no ill will towards any one but I will always call 'em as I see 'em.

 

 

 

 

Thank you @ar_vin

by erichlin - 2021-08-13 19:39:58

Thank you @ar_vin. I agree!

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