Questions for Dr Follow-Up

Hi all! I have my 3 month checkup tomorrow with my Dr. (who is amazing btw; Dr. Mandrola; hope it's okay to share his name). Are there any questions y'all would recommend me asking? I'm 30 with HIS pacing. 


9 Comments

WOW HIS Pacing!

by Swangirl - 2020-07-07 13:40:34

HIS pacing is not easy to do, takes some special expertise and is not all that common for people who are ventricle paced.  But it is the best, state of the art, and will not be as likely to result in pacemaker syndrome and heart failure as other ventricle pacing.  You do indeed have a great doctor.

Questions

by AgentX86 - 2020-07-07 14:26:31

You don't give any information. It's impossible to answer a question that broad without information.

Depends on how you are feeling

by Dh13 - 2020-07-07 18:08:37

I have HIS pacing.  At 3 month I had them adjust the settings.  I needed it to be more sensitive for running.  I still need more fine tuning.  It really depends.  After 3 months they should have some data to work with and feedback from you on how you are feeling.  Lots of folks on here will answer questions based on thier own experiences.  

 

 

DH13

by Jdky - 2020-07-07 19:16:48

So I am A sensing and V pacing. I believe my Dr has all of the "motion" sensing and what not turned off because apparently my A is pacing fine (I think I have that right...). I have tried to run and it has felt very hard (could also be due to recovery from my Achilles rupture whichhappened almost exactly a year prior 😕). Are there still settings that would be adjusted since the "motion sensing and whatnot" is turned off? He has my low rate set at 40bpm and per my Fitbit my heart rate hasn't gotten below 44bpm since device placement. 
 

sorry I am not more specific with questions to ask. I guess I still have much to learn about my device. 

Something is strange.

by AgentX86 - 2020-07-07 23:19:01

Now we have something to go on.  First, I would check the rate response and limits.  If your rate is getting that low, you have Bradycardia (by definion).  As such, your SI node isn't all that healthy but perhaps it still responds (you would be "chronotropicly competent") but you're probably not 0% A-paced.  I'm surprised it hasn't been set significantly higher than that (60bpm, or above).  I'd certainly question that. 

What is your top rate?  You may be losing AV synchrony at high heart rates as your PM starts limiting your rate.  That'll certainly put a crimp in your style.

OTOH, fitbits aren't all that great for tracking heart rate.  None of the Pulse-Ox type sensors are worth anything but as toys, particularly if you have any sort of arrhythmia.

It's a good idea to get a dump of all of the settings of your pacemaker (they have to give it to you).  You might want to bring a thumb drive with you so they can copy it there rather than print it.  You can use that, and the manual for your pacemaker (usually available at the manufacturer''s web site) to learn more about your hardware.  If you have questions, there are a number of people here who have decoded the PMese.

Welcome

by Pacedmyruns - 2020-07-08 02:56:57

HIS bundle pacing is suppose to be superior to the old standard way. Mine is the old standard way on the septal wall.  I'm pacing more than what they thought I would or else he would have placed the HIS lead instead.  He debated the day of surgery but opted out.   But I would definitely ask about battery life. Battery life with HIS pacing isn't the greatest and it may only last 3-5 years.  But like someone else said, it is suppose to help decrease your risk of heart failure from chronic pacing in the ventricles.  I pace 100% with exercise and mainly A sense and V pace. I dont need rate response because I my heart can accerelerate fine with running. So you probably won't need it either. My lower limit is set to 45bpm because like you, I'm not symptomatic with my low heart rate so why pace at 60 if you dont need to.  I was at 60 at one point and did not like it.  It was too fast for me.  If your active, it may take a few to several adjustments to get it right.  Once you get it set right, meaning no bumps etc, then you'll be fine. It does take time to get use to pacing with exercise. It took about 3-4 months for me to get use to pacing with running.  Now it's normal to me.  But ask about pacing percent, battery life, if you have a home monitor how to use that if your having issues and need to send in a report.  I would want to know what my max HR is set too because with V pacing you need it to get your heart rate up. Mine is set to 45-185bpm, I started at 160 and finally settled at 185. If your heart is fine otherwise and you can tolerate high rate pacing they should be able to set it higher than you can get too. I never get to 185 but it gives me room to increase my rate and have support.  Good luck and tons of help around here.  

Apt Went Well

by Jdky - 2020-07-08 12:20:30

First - thanks for your help. I figured I would share what I learned since y'all took the time to help me. 
 

dr says everything looks great. He isn't going to adjust any settings since my A rate synchrony is good. They turned the PM setting down and my escape rhythm is still working at around 40bpm. Question  regarding that...for any of you that have had your PM for a while, has your escape rhythm remained healthy, or have you found that your heart no longer can provide an escape rhythm (aka it would be fatal if your PM stopped working)? 
 

anyway, he is thrilled with PM performance. He mentioned something about selective and non selective capture and said my battery should last 10+ yrs.

 

i asked if I can start doing push-ups again. He said I can if I want, but he would avoid heavy chest exercises unless I feel like my life is less full without it (I'm going to make a separate post about this). I also asked if he has an issue with me running a triathlon and he said no.

 

so, a good report and thanks again for the help!

Escape rhythm

by AgentX86 - 2020-07-08 13:25:28

I have no detectable escape rhythm. I have no AV node or bundle of His (ablated away) so no atrial or junctional rhythm. Every time I see the device tech she runs the test you describe above,  right down to 30bpm (lowest allowed) and there is nothing to catch it. Feels awful but lasts only a couple of seconds

That said, there is probably a ventricular rate somewhere below this that wouldn't let my heart stop completely if my pacemaker failed (they don't just stop), I'm quite sure I wouldn't be conscious at that point but would probably make it to te hospital, hopefully before any organ damage occurred.

I've had PVCs so I'm not too worried about it. I don't worry about what can't be changed anyway. Better things to do with my time.

Dr. Mandrola

by AgentX86 - 2020-07-08 22:11:06

I didn't notice the name when I read it the first time.  Dr. Mandrola is a bad (the worst, in fact) word over on the Afib forum.  I've read some of his stuff and I can't say that I disagree. I'm glad you found a doctor you trust but I'd never go there.

You know you're wired when...

You participate in the Pacer Olympics.

Member Quotes

At age 20, I will be getting a pacemaker in few weeks along with an SA node ablation. This opportunity may change a five year prognosis into a normal life span! I look forward to being a little old lady with a wicked cane!