Did I really need a pacemaker?

Greetings, newbie here. Feel much gratitude to be part of this group. Learning a lot, thanks to y'all for your kindness and sharing experiences. 

Boston Scientific l331 PM implant on 2/12/24, all went perfect. Started feeling better the very next day. Started working out within a few days. Avid cyclist, gym workouts, walking, and just activities around the home (on 5 acres with woods). Felt better than before implant.

Before implant I just was always feeling I was missing 2-3 gears. Felt empty energy wise. Short of breath a lot. Took me a long time to get motivated,  etc. Love being active, very important to me. 

Was dx with Chronotropic insufficiency from a stress test. Heart rate maxed at 105. For my ageEP doctor explained what is going on and the solution with a PM.

Had first follow up this week and left the appointment very confused. High level results:

PRESENTING: SR @ 70 BPM

EST LONGEVITY: 14.5 YRS

LEAD TRENDS STABLE

AP= 20%  VP= 0%

EVENTS: NO NEW EVENTS SINCE 2/13/24

PRIMARY CLINIC SCHEDULED 6/27/24-KS/KH

Was told I'm pacing 20% in right atrium. More detail shows that occurring mostly when sleeping and keeping HR >60. 

No pacing in the right ventricle. Which I'm told means natural pacemaker is handling exercise demand. During exercise I'm getting HR around 130 or so. Details show this is natural and NOT the PM pacing. This is my confusion.

If Chronotropic insufficiency is dx how am I getting to 130 naturally?

Did I really need a PM? 

Why am I feeling better? 

Low setting = 60

Max setting = 130

The Physician Assistant I met with couldn't really explain well enough on my situation. 

Have another check in 3 months, would like to have more answers before then. 

Thoughts, suggestions, etc? 

Thanks for any feedback. Much appreciated. 

Dan Rhoden 

 


3 Comments

Yes

by Tracey_E - 2024-03-21 13:26:32

If you are pacing 20% of the time, and feeling a lot better, I would say yes you definitely needed it. One in 5 beats are getting help from the pacer, that is significant. 

For some people with sinus problems, the heart will dip at rest but once they get moving it will go up on its own at beat normally. Perhaps that's what is happening the times you are getting your rate up but not pacing? However, the 20%, and since you couldn't get your rate up that high prior to the pacer, to my not-a-doctor mind would indicate perhaps the tech is reading it wrong and it is, in fact, the pacer. I would ask the doctor the same questions you asked the PA. Perhaps the answer will be different. Until then, trust that the pacer is doing its job and try not to question your decision to get it. 

Great advice

by Oaktree75 - 2024-03-21 15:27:28

Thanks so much for the reply. Your thoughts make sense, wasn't confident in the feedback the PA provided and it was with some hesitantation and uncertainty. Maybe the data was miss interpreted. Next appointment is with vendor representative and doctor. I'll also send follow-up questions to doctor from this appointment. 

Thanks again,  you're awesome. 

Take care 

Some of the interpretation you were told is incorrect - and 130BPM seems low

by crustyg - 2024-03-22 03:46:18

"No pacing in the right ventricle. Which I'm told means natural pacemaker is handling exercise demand".  This is not correct.  Your device is probably set for DDIR pacing mode - with Boston Sci's RYTHMIQ (tm) to reduce ventricular pacing.

D: Dual Chamber Paced  D: Dual Chamber Sensed  I: Response to sensing - Inhibit

R: Rate Modulation - higher HR as needed

What the device is doing is generating a target value for your HR according to your Rate Response settings, and generating an activation to your Right Atrial lead if no natural activation is detected after the time since last sense/activation and for the planned HR.  Happily your RA activations are reaching your R Ventricular lead (and being sensed) so your device doesn't need to activate your RV lead - your RA-node is working.  So it's your PM that's handling exercise demand.  Happy days.

I urge you to ask for your PM settings and reports at every in-person session and have a look at them.  In my opinion you have the best PM for a road-cyclist with your condition (SS+CI) - you should have Minute Ventilation enabled, which will allow your PM to drive your HR when on your bike and there's little or no upper body movement.  Take a USB stick (==thumb-drive).  If they decline, put in a request for your data using your legal entitlement - slower but it works.

A maxHR of 130BPM is low for your age and lifestyle.  You probably have good coronary arteries, and exercise is important to keep your bone mineral density up since you're probably on steroids for SLE (==lupus).  Load/weight bearing is the best.  You and I are of an age and lifestyle (and same PM): I pushed for a maxHR of 160BPM at 5 weeks and it's been great, cycling up mountains etc.  Resting HR at implantation: 42BPM, 10months later 28BPM.  These things tend to progress, so don't be shocked if/when they do.

Glad that the device has given you more energy.  As Tracey says, you definitely need the PM.  Send me a private message if you want to discuss settings etc.

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I just want to share about the quality of life after my pacemaker, and hopefully increase awareness that lifestyles do not have to be drastically modified just because we are pacemaker recipients.