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New Pacemaker

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New Pacemaker

Post by mikenall on Thu Aug 29, 2013 6:17 pm

Three weeks ago today I had a dual chamber Biotronik DR-T pacemaker implant.  It's been an interesting experience.  The device is currently all but shut down.  A week ago the woman at the device clinic told me "If I wasn't seeing this with my own eyes.... I would tell you it's impossible".  The pacer has a complicated emotional response algorithm based on body temperature, respiration, electrical signals inside the heart, adrenalin levels, and I don't know what else.  That system has a theoretical cap of 70 BPM, 20 BPM over the base pulse setting.

The pacer also senses arrhythmias and makes constant adjustments to itself.  Somehow, through a combination of factors they have yet to figure out, it will suddenly pace me at various paces up to about 120 BPM while I am sitting still.  While this is unnerving, it also sometimes does things to the ventricular pacing that become quite painful.

My EP has been out of town for a week and will not be back until next week, so basically another EP turned it off.
This just keeps getting better & better.
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Re: New Pacemaker

Post by Rachel August on Fri Aug 30, 2013 3:11 pm

I can't believe this - that's terrible!!!

I can just picture some guy in a lab saying: "If these humans would just stop breathing so that the 'emotional response algorithm' can work better.....works in the lab under perfect conditions....."

Sorry - couldn't help myself for writing that -

How frustrating for you to have to go through this! "Interesting experience" that's an understatement!

Really hope they can figure this one out soon - you're overdue!


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Re: New Pacemaker

Post by mikenall on Fri Aug 30, 2013 3:39 pm

I'll be seeing the Dr. next Wednesday. I'm telling him he has two options... fix it or go to Syracuse and run my relay leg. (He is a runner)

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AMI/stent July 2000
Right carotid endarterectomy September 2010
Biotronik Evia DR-T dual chamber pacemaker August 2013
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Re: New Pacemaker

Post by Marc Thayer on Sun Sep 01, 2013 10:30 am

AAArrrggghhhh!

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Re: New Pacemaker

Post by Rachel August on Sun Sep 01, 2013 6:04 pm

Sounds like your doc's really just got one option - to fix it!!!! I'd much rather see you running and healthy again!


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Re: New Pacemaker

Post by Dave Tuttle on Mon Sep 02, 2013 8:10 pm

Good luck Wednesday Mike... Tell the Doc he better fix it, we don't want a sub for you in the relay!

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Re: New Pacemaker

Post by russwyd on Tue Sep 03, 2013 9:07 am

Best of luck with it Mike, hope you get it fixed, or else I'll have to step in as team reserve and bill the flights to your doctor...!
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Re: New Pacemaker

Post by mikenall on Sat Sep 07, 2013 10:11 pm

Hey Russ,

We'd love to see you there, but as of now I'll be running my leg.

Here's the latest update, and I'm not hallucinating nor am I making this up.

On August 15, 22, 23 & 26,  They made adjustments to the PM.  I wore a 48hr holter 8/23-8/25 and a 24 hr holter 8/26-27.  The EP who did the implant was out of town this entire time.  On 8/23, another EP had them turn the max BPM down to 125 the min BPM to 50, and turned everything else off.  I couldn't get my heart rate over 125 and couldn't really run.

The first appointment I could get with my EP was Wed. 9/4.  He bumped the max BPM up to 140, said he wanted me running, something about maybe trying to turn the 2nd lead back on at some indeterminate time in the future, and told me to come back in 6 weeks.  He said the pacemaker won't know if I'm running up a hill or climbing stairs, so I should reach up and shake it a little at those times to speed up my heart.  I didn't really say a word.  I think I was shocked.

I called him back on Thursday and told him I bought a Porsche and he gave me a Yugo.  He told me even a Maserati misfired sometimes, he's been doing this a long time, he knows what he's doing, and if he got worked up every time a pacemaker didn't work right, he'd have gone crazy a long time ago.

I spent a good deal of time Friday calling my insurance company, the device manufacturer, my internist, a cardiologist and other people I know with some knowledge of these matters.  I know exactly what I would be doing if this were an automobile, computer, or television.  But, unfortunately, I can't return it or picket outside his front door.  If I don't feel I've made any useful progress next week, this could get ugly.  If there is a constructive plan of how this will be handled, it hasn't been shared with me.  In my mind, come back in 6 weeks just doesn't satisfy me.
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Re: New Pacemaker

Post by kodi30 on Sun Sep 08, 2013 1:14 pm

I'm still having some problems getting my tweeked right but if I were having the problems you are, I'd be totally out of patience and want to rip the thing out....actually I'd like to do that anyway. Hope you get this whole thing under control soon...six weeks is a long time.

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Re: New Pacemaker

Post by twal on Sun Sep 08, 2013 6:07 pm

I'd be looking for a second opinion from an EP guy. Hope all is well soon or at least by Syracuse.

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Re: New Pacemaker

Post by Dave Tuttle on Wed Sep 11, 2013 6:21 pm

Hang in there Mike and keep after them!

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Re: New Pacemaker

Post by russwyd on Wed Sep 18, 2013 1:59 am

Any news Mike?
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Re: New Pacemaker

Post by mikenall on Fri Sep 20, 2013 5:38 pm

Hi Russ,

I'm doing OK but definitely still have problems with the PM. It's pretty much turned off right now and I go back 9/30. It's been a very frustrating experience. I've seen another Electrophysiologist and he told me the guy I chose practically wrote the book on pacesetters in athletes and has already forgotten more than he'll ever know, and stick with him. In the last 4 months I've had a 14 day event monitor, 3 holter monitors, an ambulatory blood pressure monitor, 3 echocardiograms, a metabolic stress test, a nuclear stress test, PM implant, numerous chest x-rays, about 6 pacemaker programming changes in less than 4 weeks, and more ECG's than I had ever had in my entire life.

I've been keeping a diary on this as it's hard to keep track. I'll have to put something together and post it here.

Barring any "new" issues, I WILL be running in Syracuse.

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AMI/stent July 2000
Right carotid endarterectomy September 2010
Biotronik Evia DR-T dual chamber pacemaker August 2013
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Re: New Pacemaker

Post by trishb on Sun Sep 22, 2013 8:19 am

Sorry for all your pacemaker woes.    I sure hope they get to the bottom of the problem.  

It took my EP 5 years to figure out that one of the leads going into the atrium was causing tons of issues.    
However that was only discovered when I went in for an ablation.  (the actual positioning does not show up on Xray.)    
Of course having the leads removed and pacemaker reimplanted almost killed me, but that's beside the point.

There is always a reason for something not being right.  So don't settle for having to 'live with it'.   And certainly if someone told me not to get worked up over it....no matter how knowledgeable they are....I would be kissing his butt goodbye.      
Sorry, but I've never met a doctor who could walk on water.  

Keep searching for answers!!
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Re: New Pacemaker

Post by kyoung on Sun Sep 22, 2013 12:34 pm

Sorry to hear about all your trouble with the pacemaker. Hope they get it sorted out soon.

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