Success Stories? CRT, Biventricular Pacing, LBB Pacing

Success Stories is a new Category under Forums

by Gemita - 2023-10-12 14:47:00

DoingMyBest, Just to help start this off, “Success Stories” is a new category under Forums, so there are only a handful of posts so far and none specifically on CRT or Left Bundle Branch pacing. 

If you search CRT under “Q” top right (you probably have already), it will give you some 26 pages of CRT posts that you can look through at your leisure.  There are many positive comments to be found from members, although clearly CRT is not always a cure for every member.  

If we had an indication for a CRT device in the first place, I would find it rather unusual to elect to turn off one of the leads, even if ejection fraction normalises, since if ejection fraction recovers, why risk turning off a lead which has led to such an improvement?  Heart failure, electrical disturbances, heart disease and other conditions are often progressive and so is ageing, so I wouldn’t be in a hurry to lose my special bit of hardware.

I Prefer to Be Optimistic

by DoingMyBest - 2023-10-12 18:31:02

Gemita, I'd be delighted if you and I and the rest of us could "heal" and be able to turn off these devices. As wonderful as it is, I'm not a fan of having ever-more dependency on this thing. I'd prefer to have the healthy heart and body of a 30 year-old, thank you. Please, sign me up when there is a new stem cell therapy that fixes my heart.

I agree, it makes no sense to turn off a device that one is dependent on. I simply ask the question, has anyone ever improved to the point of no longer being dependent? It occurs to me that Temporary Pacemakers are a thing used in certain surgical procedures. Those are removed when no longer needed. Does that ever happen with Permanent Pacemakers?

Perhaps I sound like a naive child. But hey, "there's no such thing as a stupid question," right?

If there are some good news stories out there, let's hear them and provide hope for those who are otherwise feeling despair.

CRT-P

by Lavender - 2023-10-12 21:28:00

I'm almost three years into having CRT-P. Within a short period of having it, my EF increased to normal. 
 

Many of us have AV nodes that no longer function. The CRT-P doesn't fix that. The node is dead and cannot heal. The device keeps me alive inspite of having complete heart block. My LBB is dead too. 

Improvement..

by USMC-Pacer - 2023-10-12 21:44:20

I don't know for sure if it's improvement yet. But, you can read my most recent story about my upper limit (device) and changes I've seen.

Long story short, I've had issues hitting my upper limit during exercise for years. I'm constantly bugging the DRs to raise it. Well, it's at 150bpm now. Typically when I hit that, it puts me into a 2:1 block. Meaning during exercise, I'd be at 150 and pushed down to 75... ya that feels wonderful while you're exercising. It's suppose to protect me from something, but I have no idea what. Anyway, my last few workouts that I've pushed myself, I have been able to get my HR up over 160bpm. That isn't supposed to happen unless it is my heart doing that. With 100% heart block, it shouldn't be possible. Yet here we are.. I would call that an improvement in my electrical system.. new connection?? I'll have to wait for my next IN clinic appt. so they can do more tests. Incouraging for me at least :)

I am an optimist too

by Gemita - 2023-10-13 01:29:11

DoingMyBest, many of us live completely normal lives with a pacemaker, or as near normal as is possible which can feel like a cure for our condition.  Electrical disturbances like SSS and heart block are easy to fix with a pacemaker although the cause (and there may be many) is not always so easy to find or to correct.  

As an intermittent syncope sufferer with tachycardia/bradycardia syndrome, the quality of my life before my pacemaker was awful.  My dual chamber pacemaker (right atrium/right ventricle) has been a success story in so many respects but since your post is specifically about CRT or the newer left bundle branch physiological pacing, I am clearly not qualified to answer your questions.  However since you asked has anyone ever improved to the point of no longer being dependent or needing their pacemakers, there are members here who after an initial illness requiring a pacemaker, have had a reversal of their fortunes where the original cause for their symptoms either disappeared, or went into remission.  They have asked about removal in these circumstances.  Sadly too I continue to see posts from members wishing to have their pacemakers removed because they feel pacing is making their symptoms worse.  In both cases it is difficult to know what to advise since electrical disturbances by their unstable nature, can change rapidly.

Heart scarring is common with many heart diseases and has a strong association with abnormal heart rhythms, which can cause a life-threatening cardiac arrest.   Of course like you I would love to be cured of my heart rhythm problems without needing a pacemaker but until more “curative” treatments for our electrical disturbances are available, I see the pacemaker as a truly remarkable invention that has improved my quality of life.  

There are a few members to my knowledge with left bundle branch pacing (see for example first link/post from member Caratacus).

Left bundle branch pacing can be achieved with a high success rate and demonstrates a low capture threshold with improved LV dysfunction during follow-up.  However, lead-related complications can apparently be common (see second link).   Limited data is currently available regarding the long term efficacy and safety of left bundle branch pacing so further studies are necessary.  I hope you have success with LBB area pacing.

https://www.pacemakerclub.com/message/42193/left-bundle-branch-area-pacing

https://www.ahajournals.org/doi/full/10.1161/CIRCEP.120.008874

To answer your question about "turning it off"

by Beni - 2023-10-13 13:17:49

DoingMyBest, to answer your question about turning off a pacemaker, check out this case study.  The short answer is, apparently, yes.  But it is not common or is it recommended.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7532525/

The key, I think, to keep in mind about the patient mentioned in the paper is that she was a "super responder".  Not every one is.  I would also like to know if her CRT is still turned off (note the date of the paper)?  I feel like there is a chapter missing.

If you are interested, you can read my BIO to see what my cardiac issues are.  I have a CRT-D which was implanted a little over a year ago.  I have responded to it very well.  My EF rate improved from 19% to over 51% in 7 months.  I do not even notice it anymore. (Now, what I did have problems with were all the prescribed medications I was on but I think - fingers crossed -  I have that pretty much sorted out.)

Like you I would much rather be young and healthy again.  But as I recall I didn't really appreciate it all that much back then.  More or less took it for granted.  Like others my age, I was a card carrying member of the "what, me get old?! Not likely!" club.  And yet, here we are.  Still, with all the madness in the world, I much prefer being on this side of the sod.  Others have not been so fortunate.

While it may not seem like there is much celebrate - yet - it is early days.  Although many make getting a pacemaker sound like having a hang-nail these are quite invasive surgeries and take some time to adjust to.  Be patient and be kind to yourself.  And keep us in the loop.  Here's hoping your next echo shows tremendous improvement!

All the best,

Beni

CRT-D

by Debs59 - 2023-10-13 14:01:10

I've had my crt-d for 8 years now and getting ready for a replacement in a few months.  I am a lucky one...my EF was at 25 when placed on one and it went up to 50-55.  So perfect! Eight years later I need to have an ablation as my EG is struggling again at 40 and PVCs galore.  I hope the ablation improves the EF again.

Good Life Thanks to CRT Pacers

by DoingMyBest - 2023-10-14 01:57:17

Thank you all for weighing in with your success stories. I'm learning that CRT is a trickier subject than I'd imagined. We can all be grateful that we have these smart devices available to improve our lives and keep us going.

I brought up the discussion of remodeling, repairing, healing, because so many of us know nothing when we start this journey. We are faced with so many unknowns and questions. That's why we're here at Pacemaker Club - to learn from one another and find support. Where there are success stories, there is hope. Thanks for your contributions. Hopefully we'll hear from a few more.

Lavender, thank you so much for your success story. I'm thrilled to hear your EF is restored to normal. Of course, I realize that there are legitimate reasons to be dependent on a pacer, such as your non-functional AV node. However, a primary reason to receive a CRT pacer is that there is dyssynchrony between the left and right ventricles due to some combination of RBBB and LBBB. I had wondered how likely it is for the heart to remodel, chambers to restore to normal dimensions, EF to return to normal, and whether the BBBs might resolve. If one was so lucky, were there ever cases where the CRT function was no longer needed? Apparently, it's possible. See the article Beni referenced.

USMC-Pacer, I like it! I'm still trying to hit my MTR to see what happens. I hope to accomplish that in the next couple weeks. Since they adjusted my PVARP, I'm no longer having PMT (tachycardia) when exercising and am now able to push harder. So far I've made it to the mid 140s (my MTR is 150). I'm glad that you are successfully surpassing your MTR without the 2:1 block. That's a success story!

Gemita, as always, you have such wise, compassionate thoughts to share. I'm glad your pacemaker serves you well and has improved your life greatly. Those articles about LBB pacing are eye-opening. Thank you. Like most of us, I didn't have much choice in what treatment or device I received. The EP said this is what you need, and this is what you're getting. I certainly was in no position to argue at the time. Whether this ends up good, better, or worse than CRT in the long run, only time will tell. Now, at least I understand much better what's going on in my heart.

Beni, that CRT article is terrific. There is hope for us! You sound like one of the "super responders" yourself. It's wonderful that you've seen such fantastic improvement. If turning off the CRT device has worked once, it will happen again. Obviously, we'd like to know what exactly makes that reversal possible. Some day we'll know, then with any luck it will be routine for everyone. I appreciate your well wishes and sharing this story.

Debs, thanks for your story. Beautiful! I'm so glad your CRT-D brought you great improvement. Keep us informed on your progress. I hope you get your ablation scheduled soon and that it's tremendous success.

Again, I thank you all for adding to this thread. I've now learned that both structural and electrical remodeling are real things for CRT patients. It doesn't always happen, but it does for many. That's good news.