Device Update 3 - Doctor's Flip Flopping, lol

So my EP and cardiologist had a discussion about me. They have decided it would be in my best interest to get the upgrade to a Medtronic CRT-D "just in case" the regular pacing at the LBB area doesn't correct my HF/EF pacing induced cardiomyopathy leaving me in a dangerous place. He called it a safety net as they can't just go back in and change it. He said if things do improve with the upgrade (he still says he has no reason to doubt it will), then they will leave the defibrillator function OFF. I asked about the size of the thing. He said it's slightly bigger and would place it under the muscle if I preferred...Something else to research :)

My cardiologist called me and sprung another surprise on me (they come in 3s right?) He thinks I should have the valve issue taken care of sooner than later to prevent any damage the leak could cause. He is setting up a meeting with me and the surgeoins to discuss Surgical AVR or TAVR (transcatheter). He said most surgeons are leaning torward TAVR nowadays. Does anyone have experience with the TAVR valves?

6 Comments

Wow that’s a lotta news

by Lavender - 2023-02-28 19:27:01

You're very calm given all the revelations of late!

I can't answer your question, but want to say that I am impressed with the coordination of your EP and cardio in working out the details and coming up with a plan!

I attach some useful links from PM Club members on TAVR

by Gemita - 2023-03-01 05:34:36

USMC-Pacer,

Thank you for the update when you have so much going on.  This helps all of us to learn.

I have just had a quick search of this Club under “Q” and it only gave me one post so I did a general search on the wider internet and it threw up a couple more good Pacemaker Club posts on TAVR.  Please copy and paste the links into your general browser to open.  I think they will be helpful.

My feeling is that this is not a matter of doctor’s flip flopping but a matter of doctors making a possibly safer, more established treatment choice for you.  A LBB placement might be an exciting new approach but perhaps it is not the time for a new approach, an approach that is not so well tested as CRT?  A successful LBB placement would so depend too on the ability of the surgeon. 

In view of your additional health complication, in your shoes I would be very happy (and perhaps somewhat relieved) to go with the tried and tested CRT.  Please keep us posted and I send you my very best wishes as you move forward.

https://www.pacemakerclub.com/message/31124/valve-replacement

https://www.pacemakerclub.com/message/41976/aorta-stenosis

Gemita

by USMC-Pacer - 2023-03-03 13:01:43

Thanks for those links and information! 

So it's all done. Next up will be what they decice to do with my aortic valve. They implanted a top of the line Medtronic CRT w/ 3 leads @ LV, RV, and coronary sinus. The doctor told me I responded extremeley well. My QRS went from 212 to 136ms upon implant and will improve with time as the syncrony strenthens/improves heart function. I do feel better! 

Wonderful news and you so deserve it

by Gemita - 2023-03-03 13:52:15

USMC-Pacer, that is incredible news.  What a response and you feel better too, what more could we possibly have hoped for?  The signs so far are all very promising that they got those lead tips into the right position.  Now recover well before taking the next step.  

You obviously have a bigger device now.  I hope it will settle in quickly and you will feel comfortable again very soon.  I send my very best wishes for a speedy recovery

3 leads now

by FG - 2023-03-03 15:21:38

Congratulations on feeling better and a new shortened QRS duration! That is indeed great news!

I read your previous thread. So now you have 3 leads: I presume you have an RA lead that continues to function OK. Was your original ventricle lead from 10 years ago at the RV apex and then you developed the pacing induced cardiomyopathy? You mentioned an LBB lead. Was that actually put in or was the CRT coronary sinus lead position chosen instead as a better more reliable choice? 

Thanks, FG 

FG

by USMC-Pacer - 2023-03-03 18:00:26

The original plan was to replace just the RV lead and put it from the apicle to the LBB area, and implant a regular pacer. But, they ended up giving me a CRT-D @ RV, LV, & coronary sinus .. just in case the regular pacer didn't cure the pacing induced cardiomyopathy leaving me in a dangerous place. I guess it's tough to know for sure what causes cardiomyopathy.

When the EP got in there, both leads were "entangled" so he removed them both after 10 years. He said it wasn't easy but had no complications. Now, I have 3 new leads and a new device 

You know you're wired when...

You need to be re-booted each morning.

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