One more time - meaning of ADL and UR and what is wrong with my PM settings?

AV asynchrony may be the key factor

by crustyg - 2020-03-31 06:07:55

I know you acknowledged that the long term fix is an atrial lead in your post, and you phrase it in terms of using your (healthy) SA node to provide your pacing rate.

As someone who was in AV asynchrony for some years, I can tell you that the positive impact on cardiac output of having atria contract at the correct timing before ventricles is very considerable.  When first implanted, even though I was limited to 130bpm, my exercise ability increased sharply as the atria contracted, pre-filled the ventricles with blood and then the ventricles contracted giving a much larger volume into the circulation with each heart beat.

In other words, you may really struggle to achieve your exercise goals *until* you have AV synchrony restored.  In your shoes I would be pushing to get that atrial lead.

Frustration

by Theknotguy - 2020-03-31 12:38:02

I read your note and understand your frustration.  I feel CrustyG may have the best response.  

Post my pacemaker implant I had so many broken ribs due to CPR that running was out of the question.  It took me two years to get back to "normal" because any time I'd do any partially strenuous exercise my ribs would start hurting and I'd have to stop.  I have two leads, atrial and ventricle.  

Fast forward to six years out.  I had a change in my exercise levels and I was walking the 954 foot hallway in the back of the hospital and was running out of air at the end.  Talked with my EP and asked what was going on.  He did some tests and my cardiologist (a different doctor) said all I'd need was an adjustment to my pacemaker.  

Previous discussions with my EP were that the techs would erase information after each pacemaker reading.  I always questioned that in the back of my mind as a lot of the newer electronic equipment can keep a lot of information in compressed form.  Discussion with my EP was that they would need to bring in a mfg rep to take a look at my pacemaker which is also Medtronic although not as new as yours.  

My regular pacemaker tech adjusted my rate response.  He also indicated he had three additional adjustments he could make.  Then the mfg rep came in. The mfg rep started pulling up screens while reading my pacemaker that I had never seen before.  We got into a discussion as to when I had had problems and he was able to bring up the exact day and exact hour I had had problems even though that was a couple of months back and after my regular tech had done his standard readings.  .  

I can't relay the conversation with the mfg rep as it all came out as noise.  Something about adjusting the green gazorp and leveling the red whingy dingy and I should feel better.  Told him it sounded good to me and he said that was good as he'd already made the necessary adjustments.  And, if they weren't OK there were some more changes he could make.  I walked out feeling better and over the following weeks I could walk the 954 feet without running out of air.  Felt a lot better and had more stamina.  Maybe the pacemaker is a little more sensitive to vibration but I'll take that versus gasping for air all the time.  

My points being....  Now that you know my story you can get into a different conversation with your EP.  Also the Medtronic mfg rep may have some tools your regular tech doesn't.  And, of course, there may be some other adjustments that can be made.  

One other thing, you may not be able to come up to 100% of what you had before the pacemaker.  I still have the chronotropic incompetence and problems with the broken ribs and that keeps me from going back 100%.  However, I do lead a "normal" life in spite of the problems.  So there may still be some adjustments you'll have to make.  

Hope this helps and you can find a solution quickly.  
 

ADL & UR settings

by frankmcw - 2020-03-31 16:11:07

To answer your questions, the ADL setting is the heart rate, in bpm, that the PM will ramp your heart rate up to, based on your ADL Setpoint. In your case, a setting of 25 means that the PM will count out 25 "accelerative movements" (bumps or jogs) before it begins to ramp your heart rate up to your ADL Setting which is 130 bpm. My ADL Setpoint is 10, so the PM will ramp up my heart rate after only 10 "accelerative movements (to my ADL Setting which is 115). So the lower the ADL Setpoint, the more quickly the PM will ramp up your heart rate. This also applies to the UR Setpoint which in my case is 110, (and yours is 201?). So lowering your UR setting to around 100 will enable the PM to ramp up your heart rate from 130 (your ADL heart rate) towards the upper limit (170 bpm in your case).  Yes, setting Rate Response to OFF enables the ADL & UR Settings to be set manually. If Rate Response is set to ON the PM will automatically elevate the ADL & UR Setpoints to higher numbers and render it less responsive to your needs. If you send your email address, I will send a 2 page pdf that describes this in detail. I don't understand how your PM can be functioning without an Atrial lead, so if that is the case, you may need to have that implanted before any of these become effective. Sincerely, Frank

Answers...

by SNORTINGDONKEY - 2020-03-31 16:47:11

@don2121 - Yes, that was me. :-)

@crustyg - That's what my doctors are saying too (i.e. get the second lead in.) The EP said that what they'll have to do is put the second lead across the chest from the left (where my PM is) to the right and then into the atrium...it will be between the skin and the breastbone (I was wondering whether anyone has this setup). They cannot go through the veins (or whatever) because mine are damaged due to radiation on my chest for cancer treatment a long time ago.

@Theknotguy - The techs that modify my PM settings are from Medtronic itself.  

@frankmcw - You answered my question! But here's the thing: when I run, my pacemaker goes from 130 to 139 or so and pretty much stays there. I sometimes run 4 - 5 miles, so am pretty sure it counts 201 'bumps' over the course of this run. But I have VERY RARELY seen it go to 145 or 150. I will check if we can change the setpoints when I go to the doctor next week. But for some reason, I thought that they were disabled because optimization was off. How about the ADL Response and Exertion Response? Have you manually modified those too?

Thank you everyone for helping out!

Another question

by SNORTINGDONKEY - 2020-04-01 10:36:37

@frankmcw - another question - once the PM detects bumps, does it ramp up in steps or does it go from whatever rate it is at currently to say the ADL setting?

What symptoms are you having>?

by PacedNRunning - 2020-04-03 02:32:06

I had one heck of a Time programming my pacemaker for exercise. Took 10 mos and a setting called rate smoothing is what fixed my problem.  I'm a runner too and it was rough.  What is your AV delay? Is it adaptive to exercise? Mine is. It basically shortens as my heart rate increases.  I'm set at 50-185bpm.  I was having sinus node exit block with exercise and I would feel Ike I was getting punched and hard difficulty breathing.  The rate smoothing fixed those dropped beats.  I don't have all that other fancy stuff on. What worked for me was AV delay settings and rate smoothing.  NOt sure if this helps. I can still run but I can't run as long as I would like. I do run/walk and my pace is anywhere from 10:30 to 11;45.miles so I basically run super fast and walk slow.  I could run continuous, I just choose not too but I could if I wanted.  HOpe that helps.

Answers...

by SNORTINGDONKEY - 2020-04-05 23:47:33

Thanks! 

My AV delay is 15 secs. I am not sure what you mean by "adaptive to exercise"...mine has two modes - one called "Activities of Daily Living" and the other one is for Exercise (don't remember the exact name.) It switches into the Exercise mode once it detects "bumps".

I am not sure what rate smoothing is. Is your PM a Medtronic Azure? I have not heard of these terms in the context of my PM. 

Question for don2121

by SNORTINGDONKEY - 2020-04-30 19:22:19

@don2121 - did you have your appointment yet? How did it go? Any changes?

Response to don2121

by SNORTINGDONKEY - 2020-10-16 19:52:42

(Sorry for being AWOL for a few months)

Unfortunately, I am going to need open heart surgery eventually for fix some valves...my EP said we will put in the atrial lead at that time. 

I am still fiddling around with the settings with my techs...in fact, I had an appointment today to try out new changes and they did an EKG to figure out if the sinus node was ok - and it was.

BTW, every time they tell me they've never seen anyone like me in terms of doing what I continue to physically do and that they have never met anyone that is so in tune with their body. A lot of this is due to the information sharing that happens on these forums...so thank you all...and I have some of the best EPs and access to good care.

However, the most shocking thing today was that they detected a ventricular escape beat!! I couldn't believe it...in all the prior visits there was no escape beat and I was 100% paced. I asked them if they were sure multiple times and I saw the graph myself...slow but sure...escape beat at 40 bpm. The docs had told me it before it won't fix itself...and I am sure it won't be back to normal but for today at least I am not a DMW...cried all the way home.