Tweaking settings

I am at 7 months post implantation (AV block, St.Jude's) and like all newbies was overwhelmed with all the changes happening. My first cardio NP was nice, but did not explain why my settings were what they were: 50-120 and 150ms.
After reading posts here and some really great advice ( thank you Don and others) I decided to be more "informed" as to what BLIP was up to. TMM was perfect, first check up- perfect again, but, I found myself progressively getting short of breath and fatigued. All TMM showed that BLIP was working perfectly.
So I asked for an appointment with a human to evaluate things and got a new NP. What a difference!
This one gave me a print out, went over all my settings and we decided to adjust some.
Here's where I will need some sage advice.
Atrium is at 3.5% but the ventricle was at 100%. Correct me if I'm wrong, but I don't want my ventricle going on permanent vacation and letting BLIP do all the work. My cardio told me my heart is very healthy ( it's my network that's glitching) and I want my ventricle to participate a little bit, at least, so my PM was reset for 300ms delay. The NP did not want to raise my top limit from 120 since she said my HR never went above that when BLIP was confessing. I am very physically active (Pilates, hiking). And she turned on the record function, which apparently will take about 3 months off my battery life. Next week I will go in and have the record mode turned off (after 4 weeks)and also look at what was happening. Apparently I had 19 "episodes" during the first 6 months, one lasting 8 seconds. One happened after I jogged with one of my dogs, and slowed down to a walk. ( I should just keep on running!)
My questions:
1. Am I right to delay the delay for the ventricle?
2. Just how concerned should I be that I am 100% paced ventricularly?
3. What exactly happens if my HR should go above my 120 top setting? Does BLIP just sit back and say, "Carry on! See you on the way down?"
4. When will St. Jude Medical finish clinical trials for the intraventricular PM so I can get one ?
Thank you all for you insight. You don't know what a blessing it a to have the support (informational and emotional) here. I'm the only one in my extensive circle of friends and acquaintances who is paced. Here, I am not alone.

8 Comments

How was the visit?

by BLIP - 2014-05-15 01:05:01

Kathy:
Please share how your visit went at the PM clinic today. My HR never hits over 100 even with pretty sustained exercise. Your HR sounds a bit high for just walking to the kitchen.
Hoping they solved the problem.
Hugs!

Thank you

by BLIP - 2014-05-15 01:05:25

Inga:
Your explanation is great! Thank you- now I have 2 questions to ask the NP next Monday.
I do believe that 120 is my max track, and I don't know if I have the rate response on, something that I definitely should know.
It's hard to ask questions when one does not know what to ask- I researched PM right before the surgery ( it was a bit sudden) but even though I consider myself fairly techie, the whole new world of vocabulary, information and processes dealing with PMs was overwhelming.
I was born with 1st degree block, it progressed to 2nd degree type 1 35 years later, and then to type 2, I am assuming a few years ago based on my symptoms, and then slipping into 3rd intermittently, diagnosed when I went in for surgery for something else. Had my monitor for 24 hours when I had to go in to the ER because of arrhythmia.
I was told back in 1990's I probably will need a pacemaker if it progresses to type 2. But when you are healthy, happy, athletic and busy, HR in the 40's and dizzy spells are easy to deny as stress/tired/need more sleep.
I just assumed I'll always be 2nd degree type 1.
The NP did mention that my ventricle may respond by itself if we raise it to 300ms. We will know the answer to that Monday! And I will ask if I am intermittent and about track rate, rate response, etc.
I am learnng so much here- and I need to know more- after all, this is my life and the quality of it will depend on how successfully symbiotic my PM and I become.
Again, thank you so much!

Depends...

by golden_snitch - 2014-05-15 02:05:35

Hi!

If you have a permanent AV-block, you need to be paced 100% in the ventricle. And in that case, it really does not make much sense to worry about the 100% pacing, because you have no alternative. If you have read about the relation between right ventricular pacing and heart failure and onset of Afib, that is of course worrysome. But whether you'll one day suffer from this complication also depends on where the right ventricular lead was placed. It seems that right ventricular apical pacing is problematic, so cardios are now trying other sites for right ventricular stimulation.

If you, however, only have intermittent heart blocks, then delaying the AV-delay is a good thing to do to reduce unncessary right ventricular pacing. I used to have intermittent blocks, and had my pacer in a special mode where it did not pace me out of every block, but only started pacing my ventricles when multiple blocks occured (your St. Jude pacer doesn't have this mode).

Is 120 your upper tracking rate? With permanent heart block, at 120 the pacemaker will stop tracking the atria, and just pace the ventricles at not more than these 120bpm. With intermittent blocks, some faster atrial impulses might still be conducted by the AV-node ventricles, and then make them beat faster, too. If the rate response is switched on, and 120 is the max. sensor rate, but the tracking rate is higher, then you might be able to achieve rates higher than 120, too. In that case, if your atria are doing, for instance, 150, the pacemaker will track this rate and make the ventricles beat at the same rate.

120bpm is usually the nominal upper rate setting. Many doctors never change it. But unless you suffer from some higher degree of heart failure, there is not really a reason why you should be limited to 120. So, if you experience problems when exercising, I'd go in again and tell them to raise this limit.

Inga

pm check

by KathyB - 2014-05-15 08:05:59

your post was very interesting. I go to the pacemaker clinic today. I have had mine in for 1 year now, my only problem is the rate setter for activity. as soon as I move the pacer goes up to 110 bpm and if I just go a few steps to the kitchen when I stop I am short of breath from the heart rate still at 110. I am going to see if that can be reduced with a quicker come back down time. also I am 98% paced atrium rate of 70 but every time I take my pulse I am about 84. hmmm will have to ask about that also. This is a great site. able to relate to a lot of things

visit

by KathyB - 2014-05-15 10:05:08

believe it or not my appointment was cancelled when I got there. my cardiologist's office merged with another and since that time, I have gone to 2 appointments when they failed to call me and tell me that either the doctor wasn't in that day or as for today they don't do pacer rep on Thursdays anymore. needless to say I was just a little hot under the collar since this was pre planned almost 10 months ago so when I finally go I will let you know how it goes

visit revisited

by KathyB - 2014-05-19 09:05:14

Hi sunshinewishes. Well, I spoke with the cardiologist over the weekend about what happened. He has heard these issues before so first thing today I got a call to arrange my pacer visit. Then in the afternoon, the pacer clinic director called me to try to explain and we had a very long very good talk so I do feel much better. my appointment is on the 9th but she spoke of some of my issues over the phone and made me feel better. Will update you after my apt. thanks for the wishes

So glad !

by BLIP - 2014-05-19 10:05:13

Kathy:
Super good news. I am so glad for you!
The best part is reading that the director called and tried to clarify the matter.
And the 9th will be here in no time. Please keep us posted!
Hugs.

pacemaker checked

by KathyB - 2014-06-09 05:06:00

Well, had my appointment and the pacemaker is doing exactly what it needs to do. they found my problem with racing heart is not the pacemaker but when I start activity I go into an accelerated junctional rhythm not pacer induced so looks like new medications will be in my future.

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