Introduction and questions

I've been lurking here on the forum for the past several weeks and thought it was time to join and provide an introduction. I'm not a "legitimate" member of the club since I'm having my pacemaker implant tomorrow (gulp!). I'll put my questions at the front so those who don't want to read my overly lengthy introduction can skip it. The important background for the questions is I'm a long distance cyclist, 69 years old (in 5 days) and have been an athlete my whole life (runner then cyclist). I'm having a Boston Scientific pacemaker implant.

Questions:

1. If I continue to do long (200K+) rides post-implant will this damage/degrade my heart or will the fact that I'm now paced ameliorate that?

2. I'm assuming the over the air monitoring generates alerts to the EP if there's anything amiss and I'll be contacted to make changes in the programming - is this correct?

3. How often are adjustments made? By whom (EP, technician or nurse?)

4. My EP says settings are "guided by how I feel" and that they don't do e.g., a stress test on a stationary bike while monitoring. Analytically, that seems like a better method to me. I know there are places (Mass General for example) that cater to athletes, are there any in the Midwest? Should I pursue that or have others found the "guided by feel" method to be sufficient?

I guess that's it for the questions (for now!). Thanks for any and all replies!

Introduction

As I said above, I'm a long time athlete. I ran track in college (10K) and have cycled 10K-12K miles per year for more than 20 years. I was essentially asymptomatic (see * below) until early June when my HR dropped to 60 while riding and to 40 after coasting for 20-30 seconds. 

I've had an EKG, echocardiogram, exercise stress test with dye, Zio monitor and cardiac MRI. Zio monitor shows low HR of 29 with repeated pauses, longest pause 5.1 seconds. Diagnosis: bradycardia, 1st degree AV block, chronotropic incompetence. Heart generally healthy, no blockage, valves OK. RX: pacemaker implant.

I had a very good consult with the EP. He spent 1.5 hours with me, had reviewed my test results before the consult so came in prepared. He seems to be sympathetic to my desire to continue long distance cycling.

Since the event in early June I've been feeling progressively worse and the frequency of the pauses is increasing. I've not had any episodes of fainting but at the rate of progression I think that would be in my future without the pacemaker.

* As mentioned, I thought I was asymptomatic. There were days where I didn't feel all that great but put it down to aging. I've worn an Apple watch since 2020 and only recently downloaded all the data (more than 500K data points). Long story short, there were numerous instances where my HR was below 40, starting in late 2020.

3 Comments

Hi there!

by Lavender - 2023-07-26 10:54:14

I'm a Boston Sci recipient of a CRT-P. I had pauses as long as 33 seconds and fainted for six months before the rare arrhythmia of ventricular standstill was discovered by a heart monitor. 

With my implant, I was adjusted at insert and then again before leaving the hospital. 
I was seen in a week for an incision check but no adjustments were made until five weeks post implant. At first they set the heart rate higher until the leads imbed more in the heart tissue. After that it's turned down. Mine is set from 60-130 bpm. 
 

I have had my device for two and a half years. I'm seen in office for a pacemaker interrogation every six months. The tech makes the adjustments only after running it by the cardiologist.  After implantation, I never saw the EP again because the cardiologist runs their own pacemaker clinic. 
 

My Boston Sci is a ValitudeX4. 
I came home from the hospital with a Latitude communicator device. It checks me nightly for a quick look-see and if it would find any issues it would contact the cardiologist. Never happened yet. 
 

Every six months, alternating with the inperson visit, it does a more complete check and transmission to the cardiologist. 
 

So, I am checked every three months either at home or in office.  I also have the app from latitude which daily I can check to see if my monitor is working properly and when my next in home six month check will happen as I sleep. I never feel anything when that happens. 
 

God be with you and guide your team! Boston Sci's are good for athletes!  👍🏼

Some answers

by crustyg - 2023-07-26 11:10:09

1 Long cycle rides paced are not an issue.  However, you will hit one problem with certainty: BostonSci PMs are great for road cyclists with SSS+CI (you have CI at least), as their Minute Ventilation feature uses your breathing to feed into the Rate Response algorithm to drive up your HR.  However, the MV feed into RR only lasts for 4.5hr (so much for BostonSci's understanding of Endurance Athletics) and I can assure you from personal experience that climbing the last hills of an event after that (with a low HR) is no fun.

2 Yes, the BostonSci devices connect every night to a Latitude under-the-bed monitor.  If there's been an Event that is programmed to be forwarded, the Latitude will connect to BostonSci and your EP-team get a notification the next day,  Make sure that MV Signal Artifact Monitor events *are* configured to be reported.  OOTB they are not.

3 With a good EP-team + maximum charm on your part, as often as you need.  Typically your device will be close to factory default at implantation and then tuned at 4-6weeks afterwards.  Ideally that will be on a static bike for a proper tuning session, but otherwise send me a private message and I'll share my settings which you can ask for.  Longest I've gone without changes, 2.5years, but I've had two adjustments in the last 6months to fix issues (swimming and peloton riding).

4 If you ask around (there are at least three SSS+CI Athletes who contribute here, and we all have *similar* settings for our BostonSci devices) you can find sensible settings.  There's no reason why you shouldn't be able to start out with similar, if your coronaries and heart muscle are in good shape.

One of the most important things to ask for, ideally from the start, is a sensible maxHR (they may talk about max tracking rate etc., but it boils down to the maximum HR that your device will provide).  At implantation they activated both my leads, but as the RV lead is buried at the RV-apex, and that's a *long* way from the RA, the max HR that the device could allow was 145BPM.  Not nearly enough.  After a full and frank exchange of views, we turned off the RV lead and I'm now AAIR, with maxHR of 165BPM.  Whether (or when) the RA disease (probably fibrosis) that's destroyed my SA-node affects my AV-node is the bet that we have between us.  *IF* you can get a His-bundle RV lead then that's much better - much closer to the AV-node so able to support a higher tracking rate => higher maxHR.

Hope that helps.

Follow up with a question at the end

by Aintgotrhythm - 2023-07-30 22:42:57

I thought I'd respond to my own post with a follow up. First, thanks so much to Lavender and Crustyg for their welcome messages and replies.

As you might have guessed by now, I survived the implant. There was a very disturbing last minute event that caused some frantic decision making. I had a cardiac MRI the day before implant (it was rush scheduled so I could get it done) so I was checked in and gowned but not yet prepped and the EP came in and said "we have some things to talk about".

Uh oh.

From the post visit summary:

The MRI showed extensive, dense scar in the basal to mid inferolateral wall. He has no family history of cardiomyopathy, pacemaker or ICD. Also no ventricular arrhythmias on his recent 7 day monitor. Sarcoid or some other inflammatory cardiomyopathy is a possibility. Therefore, we did discuss holding on PPM, obtaining a PET and determining if there is an indication for ICD. However, given symptoms that are progressing to near syncope (5 second pauses) we elected to proceed with pacemaker today. We will monitor for ventricular arrhythmias on his device and obtain a PET in 2 months.

So worst case, I'll go in for the PET and find that I need a different pacemaker with an ICD lead and need to have this one removed. 

Obviously, I'm not happy about this and my initial reaction was there was no way I'd get an ICD pacemaker installed. However, after doing more research and finding that in the event of VT/VF the heart would stop pumping blood to major organs I decided that would be a bad thing :-( 

After the implant the EP said he was "very confident" I'd made the right decision in going ahead and felt strongly that in two months I'd find that a new PM wasn't needed and that I wasn't at risk for VT/VF.

So a question for anybody who has read this far:

If you have (quoted from my MRI) "scarring in the basal to mid inferolateral wall" under what circumstances would/wouldn't this call for an ICD pacemaker?

Finally, I'm not feeling all that great. I don't sleep well (can't get comfortable) so that's not helping much. I hope this improves over the next few days/weeks.

You know you're wired when...

You name your daughter “Synchronicity”.

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