help with dialing in Adapta ADDR Medtronic

My electrophysiologist at University of Pennsylvania does not know the ins and outs of the Medtronic Adapta, that was designed for the peculiar and specific needs of cardiac athletes. Unfortunately, even though we have switched around a few settings, they are still not willing to make the changes I need to have the device work properly when I am NOT exercising. The device is working when I am exercising. However the irritation from the device has damaged and enlarged my right ventricle, so now my ejection fraction is down to 40% on that side, from 65%. I just had a cardiac MRI.

My diagnosis is second degree heart block, basically a type 1 variant since the block is at AV node. I started being paced at implant 9% ventricularly and now I am up to 60% because of a combo of worsening of my disease as well as electrophysiologists who cannot think outside of the box.

Currently I am in DDDR, with a very low Amplitude setting in the ventricular lead. (1.0V, the average is 4V) which they made up for by setting my pulse width at the highest possible setting (1.5 ms). This pulse width setting makes it impossible to use the Ventricular Capture Management feature. To prove that I did not need my device to pace me so much, I went into VVI mode for 7 weeks and was able to work out (but it was not fun, and I could not mountain bike)

The changes I propose:
1. lower pulse width to 1ms, and turn VCM on.
2. change amplitude margin which is typically 2x to 1.5x which is allowable on my device. My ventricular pacing threshold is 0.5V.
3. Lower the Ventricular Lead sensitivity from 4.0 to 1.0 or 2.0, so it will sense more and pace less.
4. I think I might need to play with Activity Acceleration/Deceleration and Threshold as well, so any advice on this is appreciated.

Any idea on how to get in touch with someone senior at Medtronic or is there someone here who could offer some advice before I present this to my eletrophys team? I really think those of us who are lean with a very high degree of muscle mass conduct the electricity differently and so need very different settings. Obviously someone at Medtronic knows this because they built these settings into the device (I have read the Dr's manual) but the cardiologists are too busy and too cookie cutter to dial them in like we really need them too. My concern is the damage to my heart muscle from a device not set properly. Thanks for reading.

12 Comments

Block

by golden_snitch - 2015-05-12 01:05:01

When doctors/patients talk about heart block they usually mean AV-block. A sinus node block is not seen as often as an AV-block. Believe me, I had several sinus node ablations to the point where it wasn't functioning any longer, and it's called a sinus arrest/sinus block/sinus brady. LBBB is bundle branch block, and it's called that way not just heart block.

The Heart Rhythm Society got it right, Wiki is not always a good source:
http://www.hrsonline.org/Patient-Resources/Heart-Diseases-Disorders/Heart-Block#axzz3ZwiPnYDX

Cleveland Clinic:
http://my.clevelandclinic.org/services/heart/disorders/arrhythmia/heart-block

National Heart, Lung and Blood Institute:
http://www.nhlbi.nih.gov/health/health-topics/topics/hb

I had tons of arrhythmias, eight ablations, and so on. You don't need to educate me about definitions.

Rate response on?

by golden_snitch - 2015-05-12 01:05:34

Don't understand either why your rate response is switched on. With a heart block only you should not need it at all. And in patients who don't need it, if switched, it usually only makes things much worse.

Also, the Adapta was never made for athletes. In fact, it has the most basic activity sensor, a simply motion sensor. There are more advanced rate response sensors out there, but Medtronic is only offering the motion sensor. Motion sensors are not good for cycling since they need upper body movement to respond.

All the settings you talk about have nothing to do with rate response, and nothing with reducing ventricular pacing. Don't understand why you are talking about amplitudes, pulse width and sensing, they have nothing to do with your problems. If you want to reduce ventricular pacing, you switch the "managed ventricular pacing" (MVP) feature on or you program a, if possible, dynamic AV-delay that gives your AV-node enough time to do the job on its own.

No idea, why you think that an average amplitude is 4.0V. It always depends on the threshold, and different people have different thresholds. I never need 4.0, and I actually don't know anyone else who does. I have automatic capture management activated, and in my pacemaker that means that the amplitude will be adjusted so that it's alway 1.0 V higher than the threshold. Threshold is usually between 1.0 and 2.0, and so my amplitude is 2.0/3.0. Yes, generally speaking the rule used to be amplitude is 2 x threshold, but with automatic capture management in most pacemaker nowadays this has changed. There is no need for a big safety margin because the pacemakers automatically adjust to changing thresholds.

Right ventricular pacing can lead to a reduced EF - in some patients it does, in the majority it doesn't. That your EF dropped from 65% to 40% indicates that you probably belong to the group who does not tolerate right ventricular pacing that well. So, one should do everything possible to reduce your pacing percentage for the ventricle. That should not be that difficult for someone with intermittent second degree heart block. Is your MVP feature switched on?

I'd not say that a EF of 40% is high "for this board" since there are many, many members here who do not have any other heart disease apart from a heart block or a sinus bradycardia. So, most of us have a normal EF of around 60%.

If you had a cardiac MRI with a non-MRI-compatible device that would be very interesting for many members here. Maybe you can post another message specifically on how that procedure was done, where you had it done, what was done in terms of programming of the device before and after it. I know that even patients with older, non-compatible devices can safely undergo MRIs, but it's not done that often and many patients have problems finding a doctor willing to do it. Thanks!

Best wishes!

Rate Response On , Why Not ?

by IAN MC - 2015-05-12 02:05:44

Just an observation :-

We all know that you only need Rate Response switching on if your heart rate doesn't increase adequately with exercise . This is known as Chronotropic Incompetence.

There are loads of published papers which try to define what " adequately " means. Most settle for the inability to get to 85 % of predicted maximum HR , based on a formula of 220 minus age or something similar.

But try doing a search on " What causes Chronotropic Incompetence ? " and your brain will begin to hurt !

It is often over-simplistically stated on here that you are only entitled to have RR switched on if you have Sick Sinus Syndrome but not if you just have AV block.

It's not true folks : Chronotropic Incompetence can be caused by sick sinus syndrome , by AV block, by coronary artery disease, by heart failure, by drugs, and most importantly by the ageing process . Also many papers suggest that its true cause is unknown !

I think one of the main reasons that I can no longer do a sub 3 hour marathon is that I am in my seventies and have age-related chronotropic incompetence ( not to mention the sick sinus ! )

If primaldiva says she does better with RR switched on I accept this , regardless of the diagnosis .

Cheers

Ian





CI

by golden_snitch - 2015-05-12 03:05:16

Totally agree, Ian: If it helps, it helps.

And you are right, too, that most of us tend to associate chronotopic incompetence with sinus node disease. Of course, a block and the other heart problems you mentioned can cause this, too.

You have to admit, though, that fixing chronotopic incompetence differs depending on what's causing it. If the sinus node is too slow and causing it, you need the rate response sensor. If a heart block is causing CI, you usually don't need the sensor, but you of course need a pacemaker that tracks the sinus node rhythm and makes the ventricles beat at the same pace. But I will certainly not argue that there are not a few heart block patients out there who have the rate response on, and do poorly without it - it's just very rare. That's why I was asking Andrea about why it's switched on in her case. In the past 15 years I have been in touch with soooo many patients, online and in person, and never came across a patient with heart block who needed the rate response, but a few with heart block who had it switched on and for whom it made matters much worse (once they had it deactivated, they did better).

I have been chatting with a German patient with intermittent second degree heart block lately, and she just had a pacemaker put in. Her rate response is off. A similar feature to MVP is on. She's a keen runner, very athletic. Will be interesting to hear how she's doing once she gets back to running (she's planning a 15k just 6 weeks after pacemaker implant ....).

Inga

reasons for chronotropic incompetance

by primaldiva - 2015-05-12 03:05:47

Thanks Ian, also the lack of circulating T3 and poor T4/T3 conversion can contribute to heart block and inadequate adjustment to exercise, which was the case with me. My endocrinologist tested my T3 and raised my dose of thyroid hormone and my resting heart rate hovers in the 40s and 50s now during the day (even before we raised the lower limit to 45 from 40).

It much more complicated than just the device settings but you have to take one thing at a time.

best, andrea

DDDR, MVP, VCM, RR etc and rant

by primaldiva - 2015-05-12 11:05:33

Richard: I am in DDDR mode because it is the only mode that allows me to exercise at high intensity. None of the other modes work, including MVP. Second degree heart block Type 1 means the block is at the level of the AV node and not below, which means many of the search hysteresis functions will not work on me because my block, which used to only happen during high rates of exercise (which itself is a very rare presentation because the catecholamine release of exercise generally speeds AV node conduction) now occurs even with lower rates of exertion including climbing stairs or endurance rides, so setting the AV delay longer or using MVP means I end up blocking and feeling terrible. I am aware that I will never get back to 9% pacing at this point. Heart block is a disease which tends to progress with age. Even now I am assuming that the findings of my EP study in 2009 are still accurate, and I may actually have progressed to a Type 2 second-degree block. However I wore a cardionet for 2 months recently, so I am pretty sure I know what is going on with my heart in terms of block.

VVI mode: As I explained I told them to put me in VVI mode because I wanted to stop atrial pacing because it was confusing the issue. I have a very low resting heart rate (38) but my Sinus Node seems to be working fine. The EP did not want me to do it and said, "you won't even make it out to the parking lot because you are becoming pacemaker dependent" and I replied, "If I am becoming pacemaker dependent, it is only because your pacemaker is damaging my heart muscle, so turn it off. Put me in VVI with a lower limit of 40" (since my resting is 38, we allow it to go to 35 at night) And they had to do it. So I lived like that for 7 weeks. They got daily calls from cardionet saying I was in block, which makes me laugh. Felt terrible during exercise but generally better when I was NOT exercising. Also I got some very valuable intrinsic rhythm data since I was wearing a cardionet the whole time. Yes most people would not attempt the risk but I know my heart.

I have not gone to 3rd degree heart block because I would not have survived VVI very well, and there is no evidence on the cardionet. That was one of the reasons I did that test. I often conduct with my AV node just fine, right now for instance.

I don't want to sound obnoxious, but a RVEF of 40% is considered abnormal even by cardiologists who tend to minimize these things because as you stated there are those who live with much lower. I am not concerned with being compared with others with structural heart disease. I need to be compared to my ejection fraction before implantation and a heart muscle that showed no signs of cardiomyopathy, decreased EF, or any structural abnormality before implantion of a pacer in my mid-thirties. I was not informed about all these well-documented risks caused my pacing.

in DDDR mode:
+ lower rate is 45 (35 at night)
+ upper rate is 180 but they need to put it back to 200 because when I am climbing mountain biking I sometimes am at 180 for extended periods and these now show up as VHRE (ventricular high rate episodes)
+ ADL rate is 95 (which is out of the box, this should be changed since I am NEVER at 95bbm unless exercising with my resting HR)
+ Activity Threshold is Medium/Low
+ Exertion Response is 3
+ ADL response is 3.
+ ADL rate setpoint 21
+ Upper Rate setpoint 84

For those of you who are not familiar with these settings and are interested here is more info
http://www.medtronicfeatures.com/browse-features/all/CDF_DF_RATE-RESPONSE#drawer_0

Would love some input in how to modify these settings. I did race mountain bikes at the elite level (with this pacemaker) and also do heavy gym crossfit type workouts 3x per week, I walk 15 miles a day, I also run 2x per week. My exercise tolerance is way down since about 2012, when I started to notice and graph a rapid increased in PVCs, VHRE, and PVC runs which corresponded to me feeling pacing often even at rest.

Dr. David Callans is considered one of the best EPs at one of the top ten institutions in the country, and I saw 7 other EPs before him, but his ego and fear of getting sued seem to be getting in the way now. I will be switching EPs once I move to Oregon. Can switch, but I have great access to my data at Penn and switching to a system where I would have to trust the docs to make all the decisions has zero appeal.

Golden Snitch:
Rate Response is one because without it I would not be able to exercise as intensely as I do. Tried having it off, no thanks. With a resting HR of 38 but an extremely high exercise tolerance (just had another stress test) you need RR I think. (My exercise tolerance is not what it was, but it is still 150% of normal for my age)

While I would agree that the Adapta might not be the best pacer for me, it was in fact marketed to and designed with athletes in mind. If you doubt this I can send you the 336 page manual and it is loaded with algorithms and features designed for the more active. HOWEVER, there are other smaller companies out there who have more tailored products and I have no doubt that the reason I got the Adapta was because unfortunately it is not the EPs who decide on the devices for patients, but the Device Reps who you may have noticed are the ones who are in the room during implantation and initial testing, which to me is a total conflict of interest. But that is a rant for another post. Very interesting that you state the Adapta DR has a basic motion sensor. I will bring this up at the next meeting after I do some research. Truthfully it performs fine when I am cycling.

"All the settings you talk about have nothing to do with Rate Response, and nothing to do with reducing ventricular pacing."

1. not sure I said they had anything to do with rate response?
2. If your pacer is set with a higher sensitivity number, it sense MORE and paces less, so now sure how that has nothing to do with minimizing V pacing.
3. Amplitude, Pulse Width and Sensing have everything to do with my problems. My problems are coming from right ventricular irritation as I am one of the small percentage of patients who can feel every pace; knows which chamber is being paced, and I can actually feel the difference between a longer and shorter pulse width. My reduced EF on the right side is due to this irritation and this irritation is also causing some dyssynchrony which I would like to fix now before I need Bi-V pacing.
4. The MVP feature does not work for me during exercise. Search AV+ also does not work because I am blocking at the AV node. It works when I am not exercising, but if I want to exercise I have to keep it in DDDR. The point here is to change DDDR pacing to mitigate unnecessary ventricular pacing, not switch me back to MVP mode which does this automatically and does not work for me during cycling. [Maybe this is due to motion sensor?]
5. I would like to turn VCM on as I stated (what you call automatic capture management, Medtronic calls Ventricular Capture Management with a trademark, ha ha) but I cannot do with a pulse width of 1.5ms. So that has to change, which is why I mentioned it.
6. Average amplitude is higher than 1.0V, according to the EPs, but if you simply look at the device management settings, they range from 0.5 to 7.5V. If you add in the amplitude margin as padding, (b/c I am not using the VCM feature) then if you capture at 1.5V, they would set this at 3V. While I find it interesting to hear what average is, again, it's probably not going to help me much to know what works for others. When it was set higher you could actually see my chest wall moving with each pulse.
7. If you look at the Adapta parameters for VCM, the amplitude margins start at 1.5x and go all the way to 4x! Why would you need 4X if the device is set with this feature? I'm with you there.
8. I have had 4 MRIs since I got the pacer in 2009. It can be done with a Tesla 1.5 or below, but it is very hard to get approved due to the risks, and U of P is one of the very few institutions that do it. I can write more details about this in another post. There are some "ways" to convince the radiologists that you need a MRI vs. CT etc.
9. They thought I was getting an MRI to prove I did not have sarcoidosis, because they were confused I was having conduction disease progression so rapidly. I knew I did not have sarcoidosis, but got the MRI so I could prove to an outside cardiologist that the pacer was damaging my heart and causing my problems and this was the only way I could do it. Yes ladies and gentlemen, getting a medical device implanted in your body at a young age is not all rainbows and puppy tails.

I still have another 8 years on this thing, so I just want to set it correctly to minimize this damage and irritation. Or I might just have to go back into a mode that barely ever paces me, minimizing irritation (reflected in VHRE and PVCs) but I would find my highly active lifestyle impossible to continue. Seems like a terrible choice to have to make because the doctors are too busy making money to attend to the needs of a small segment of patients.

Thanks so much for your input; I definitely do not have all the answers, just doing research and testing and bouncing ideas of folks such as yourselves.
thanks for taking the time, andrea

Exercise induced HB

by WillieG - 2015-05-12 11:05:58

Hi Andrea! I, too, am in the small group who block only during exercise. Have had my Boston Scientific Advantio since last June for 2nd degree, Mobitz II block in Bundle of His, and have had difficulties with correct settings. Initially, the Minute Ventilation said ATR (atrial tachy response) only and Accelerometer Passive. I wasn't being paced during blocks and had 2 setting changes. Then at 6 month voltage turn down, I found out that I had 69% ventricular pacing. Went to Cleve Clinic for 2nd opinion and they reset with minute Ventilation off and AV search + ON. Then I had zero pacing until Dec. Noticed tons of far field R wave oversensing and 686,000 PACs , which they said was no big deal but interrogation printed out 50 pages which I thought was using lots of battery. Blocks had subsided and only had one a month biking up hills or spinning at rates over 150. They agreed to switch to VVI and that worked great for 4 months. I had no blocks for 3 months and then they returned the last week of March. Each week at a lower rate to where I couldn't even walk the neighborhood without seeing my heart rate drop in half for about 30 secs many times. They scheduled me for a treadmill test with the pacer rep. Changed the AV delay from 400 ms to 200 ms and the search interval from 32 cycles to 512 cycles (I am not sure what the cycle difference is yet). I can now be active but I still feel that strong, somewhat uncomfortable feeling as my HR goes up. See monitor drop to zero but only briefly (3 seconds?). Yet this continues for the hour of biking or in racquetball with starting and stopping. Not perfect and if anyone has suggestions, I am open to ideas.

Good luck to you and thanks to Inga and Ian for adding info. I am still learning! I will read some the the info from the attached sites.

Adapta settings

by parmeterr - 2015-05-12 12:05:39

Why are you in DDDR mode with second degree AV heart block? Should be demand mode in my opinion.

Why VVI mode? When I was in atrial flutter, VVIR was a suggestion. VVI makes no sense with second degree AV heart block.

You have gone to pacing 60%, have you gone to third degree AV heart block? Don't think it is due to your 40% ejection fraction. 40% EF is high for this board. Mine has been as low as 25%. About 30% now.

If you are in DDDR mode, what is your lower rate, upper rate, ADL rate, activity threshold, exertion response (1-5), and ADL response (1-5)? Do you have fixed set points?

Have you seen another EP?

Richard

Sensor

by golden_snitch - 2015-05-12 12:05:46

A motion sensor is not a physiologic sensor, so anything designed specifically for athletes should not work with a motion sensor only. I picked my last two devices, and I actually compared them with the Adapta, so I know the manual. EVERY pacemaker has a manual with about 300 pages that explain all the settings in detail. My Biotronik Evia has this, too, and my Sorin Reply DR also came with it. I have spoken to techs from different manufacturers before making my decision, and I have never ever heard a Medtronic guy say that the Adapta is designed for athletes - Medtronic does know its weaknesses well... ;-) My first pacemaker was Medtronic Kappa 401 SR back in 1999. This is one had motion sensor combined with the physiologic minute ventilation sensor. It worked great. But unfortunately, after the Kappa 401 Medtronic decided to drop the minute ventilation sensor, because according to Medtronic for the majority of (elderly, inactive) patients the motion sensor alone was just fine. So, now we have Sorin and Boston Scientific offering the combination of motion sensor + minute ventilation, and Biotronik has the physiologic CLS sensor.

I don't understand your point about you being special because you block in the AV-node. All heart block patients block somewhere in the AV-node. I had an AV-node ablation and my block is in the lower part of the AV-node, close to the His Bundle. Some block higher, some block lower. It's interesting that you say that the MVP feature doesn't work because you block in the AV-node. How does Medtronic explain that? Would definitely be interesting to hear! I had a very similar feature in my Sorin pacemaker, and at that time (before AV-node ablation) had only intermittent heart blocks of all three degrees, and it worked perfectly.

Is your low resting heart rate due to second degree heart block? Or is it because of sinus brady? Rate response is usually only for sinus brady/chronotopic incompetence patients, so if you really need it, I'd guess that you must have some kind of sinus node issue and not just a block in the AV-node.

Anyways, I guess, I cannot be of any help here. Sounds like you have some kind of rare issues with the pacer. Usually, I'm pretty familiar with those kinds of problems due to my history of 15 years with three different pacemaker models and manufacturers and LOADS of setting/programming problems. But some of your issues I don't understand.

Good luck for finding a solution!

heart block and MVP

by primaldiva - 2015-05-12 12:05:55

I am sure you are quite familiar with pacemakers, but this post is not about the Adapta specifically, so would rather not go on and on about that. I'm glad you're happy with your device and you were lucky you got to choose it. I am trying to adjust my pacer not debate the merits of one device over another; however, when it comes time to replace I will certainly be choosing my device.

However, you are definitely confused about heart block. All heart block patients do not block in the AV node. They can block at the SA node, at the AV node, at the His bundle, or below such as in LBBB etc. If you hear the term "AV block" that means the block occurs at the AV node. For more on this, see this page; it's actually quite good. https://en.wikipedia.org/wiki/Heart_block

MVP is a search hysteresis function that allows the pacer to wait a bit before taking over to see if I can intrinsically conduct; and if I don't it will switch pacer to another mode. Works for many, not for some athletes. That delay during extreme exercise is enough to block blood flow to the rest of my body. It's not something Medtronic has to explain, it's just the nature of my AV block. The MVP mode is working, but it's dumping me into DDDR anyway, so why not just stay in DDDR and be able to exercise? I think with MVP I would be V paced 55% with poor exercise tolerance, and in DDDR it's maybe 59% with much better exercise tolerance. You really want to get below 40% to see any benefit, according to the published research.

My low resting heart rate is a combo of genetics and the fact that I have been a lifelong endurance athlete. Everyone in my immediate family is low. My father was a world class pentathlete and his was always around 40, now it's a little higher in his 70s. We really don't have SA node issues in our family. They can do a simple test in the office to see if I have a problem with my SA node but it appears to be working fine. This is just one of the reasons I am a "special snowflake." [everyone assumes if you have a low resting HR you have sinus bradycardia, where actually having your heart beat less during your lifetime can be a very positive thing in terms of longevity]

I think if you reread what I wrote, I don't think AV blocks are uncommon, especially in cyclists. But what makes my block atypical is that it is rare that athletes block during exercise. They typically have good conduction during exercise and block during rest, when heart rate is lower due to higher vagal tone. So they will do fine in a race but later when they are sleeping they will block. I am the opposite.

Rate response would be for any person who needs their pacer to adapt to a wide range of heart rates, as in a person with Sick Sinus or else an athlete with a very low acquired resting heart rate. Since there are not that many of us, you are unaware that we exist. You see what I am up against?

Heart block [not at the AV node] suggestions

by primaldiva - 2015-05-13 03:05:57

So with the same exercise pattern, you block for a few months and then stop blocking? Or are you changing your exercise? What else is going on that is affecting your propensity to block? Also how did you notice the "far field R wave oversensing"? -- by looking at your interrogation reports? 50 pages? Oh my goodness.

When is your treadmill test? What is their explanation for your intermittent blocking pattern? Are you taking any drugs that could be affecting your heart conduction? Have you ever had an endocrine workup?

I find that that different HR monitors get really screwy with me when I am blocking or being paced, and most don't work, although I see from this forum others have no trouble. Forget about the monitor because it can screw with your perception; do you feel a 3 second delay while exercising when you feel weak? If so your settings really need to be dialed in. They should dial you in while you are on the bike like they did with me at Penn, with a Medtronic rep in the room. It took about 3 hours and I was exhausted afterwards but it really helped....until I developed pacemaker induced cardiomyopathy from too much voltage.

Answers

by WillieG - 2015-05-13 11:05:20

Will try to answer all of these questions although there are many. Yes, I had blocks and they decreased and stopped. No explanation for this according to the EP. Usually people get worse, not better. I added some exercise but basically the same. I am not a runner but bike (or spin in Winter), walk, and play racquetball. I did get in 25 days of cross country skiing this Winter. I usu exercise 2 and maybe 3 hours a day but probably not nearly the level you do. Yes, I get a copy of every interrogation report. The FFRW oversensing was there as well as 50 ATRs with mode switches. I never understood why this occurred as my atrial rate was usu in the 120 to 130 range when these occurred. Supposedly, this happens to prevent ventricle from pacing too fast.

My treadmill test was mid April. I am not taking any meds. They do not have explanation of why blocks come and go. Not the norm. I asked to have a thyroid check when blocks returned in March and it was normal.

My Polar FT7 with a chest strap seems to be very accurate. Have tried Mio and Fitbit with optical sensors and they were not accurate with exercise for me. I don't feel weak during a block as my HR drops to half so it never goes below 70. I feel a more intense beat that is not comfortable but it lasts only 3 seconds. After this feeling, I see the drop on the monitor, I had one session with the rep on a bike last summer and ended up pacing 69% ventricular. After another setting change, was zero. At the recent test, the rep was there, settings changed again, but I have not had an interrogation yet. Next one July 2. Current settings are not perfect, as I would prefer not to feel the stronger beat after a skipped one. But I think this is better than unnecessary, excessive pacing.

Did I cover everything?

Good luck to you!

You know you're wired when...

Your favorite poem is “Ode to a Cardiac Node”.

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