Pacemaker syndrome

Had my pacemaker for a year and have been diagnosed with pacemaker syndrome.  My Dr reccomends changing out my pacemaker and adding an additional lead plus defibulator type pacemaker.    When my device was first implanted one lead came loose and several weeks in they had to go back in and reposition lead.  Now I am faced with this situation.  This will be third time under the knife for this implantation, Dr doesn't think there is any adjustment on current device that will fix the problem.  I am in limbo today, wondering if I am really out of all other options.   My ejection factor before implantation was 60 now it is at 20, a real downer to say the least.


8 Comments

I would accept that additional lead as soon as possible

by Gemita - 2021-01-25 11:52:09

Railrat, I am truly sorry to hear the position you find yourself in, but looking at your ejection fraction of 20, I believe it would be wiser to act sooner rather than later now.  Listen to your doctor and go for that additional lead (third lead) + Defibrillator (presume CRT-D).   Hopefully it will get you out of pacemaker syndrome and your ejection fraction will start to improve and there will be no danger of the defibrillator firing in the future, but you will be protected just in case it is needed.  

Alternatively if you are really unhappy with your present pacemaker team, you need to urgently seek another opinion.  Time is of the essence now.

I do hope for the very best

Limbo?

by AgentX86 - 2021-01-25 12:05:16

With an LVEF  of 20%, I don't see much of a decision to be made. Only a year to go from 60% down to 20% is very fast. I wouldn't seem to make permanent damage has been done.. This juiceis exactly what a CRT pacemaker was designed to fix. It doesn't always work but your slide sound quick so if I were forced to guess,  I'd say that your prospects are good but what you have isn't going to fix what you have.

Edit: The "year" didn't sink in

Pacemaker syndrome

by Railrat - 2021-01-25 12:07:03

Gemita, 

Thanks for the advise, I like my team and the Dr seems really to care about my well being, and I guess the fact this has gone on so long is depressing.   I hope my heart has not incurred serious damage due to this, we will have to see.   This has been one wild ride from the beginning, and seems never ending.

You are nearly there

by Gemita - 2021-01-25 12:15:38

Just one more step Railrat and hopefully you will have the right device for your needs.  You have nothing to lose and everything to gain as far as I can see.  I am so pleased you like your doctor.  That will definitely help.  

I really hope they can slowly reverse your low ejection fraction, if it is due solely to pacemaker syndrome.  Keep your spirits up and stay positive.  

Pacemaker syndrome

by Railrat - 2021-01-25 12:22:42

Agent,

thanks for the advise, Dr said I was one of the unlucky ones who fall in the syndrome category. I guess sometimes you gotta do what you gotta do.   I hope with this I will see some sunshine at the end of the tunnel.    This has been going on for a year I guess undiagnosed, and just recently found through an ekg at the office and then a echo was ordered.   After that just a couple days ago I underwent a heart cath. Everything checked good on that score and that's when they figured out I was in pacemaker syndrome.   I have been feeling fatigued for the past year and have been sedentary mostly due to COVID.    I thought that and age 80 was my problem.   I have already taken one COVID shot and I am due my second one the 12th, and I hear that one is the worse so I don't know how to juggle all this.  Looks like I may miss my second one, got to talk to the Dr about that.     Thanks again ! 👍🏻

Pacemaker syndrome

by Railrat - 2021-01-25 12:28:50

Thanks again Gemita, you folks have reinforced what I thought was the best solution, I have to look on the bright side, I will have a brand new pacemaker and gained a year of battery life!!  LOL.    I so want to be done with all this and have what's left of my life back.

All the best

by Terry - 2021-01-26 13:46:29

Thanks for sharing

One more thing

by Terry - 2021-01-26 13:47:31

Be sure to ask your doctor if you qualify for restorative His bundle pacing like they do at Mayo. Actially, there are studies listed on the Papers page of His-pacing.org finding that natural, physiological ventricular activation results in "reverse remodeling."

All the best,

Terry

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