CRT therapy or reduce pacing % to improve ejection fraction and function???

declining EF

by Tracey_E - 2017-09-14 13:32:47

I, too, have cchb. I'm 50, been paced since 27 and am very active. Twinsies!

I have never ever heard of the heart healing or remodeling itself. That would be lovely, but I don't think it's realistic. I'm no expert but it seems to me that turning the pacer down would make things worse. The atria would be beating normally,  every time the ventricles don't keep up that puts even more stress on LV because blood would be pooling there rather than pumping it out,  plus you'd have the lower rate and lack of energy to deal with. I think I'd go for the CRT, but I would put it off until I couldn't do what I wanted to do. As long my energy holds, I plan to leave well enough alone. 

Last year I consulted with an adult congenital specialist and it was night and day from a regular cardiologist or ep! The doc I saw sees half adult congenital, half pediatric so he has many patients like us. If you feel like digging through old posts (Dec '16), I made a long post about it. We are the first generation to be paced long term so there isn't a lot of research, but there are a growing number of adult congenital practices out there sharing what they know with each other.

He spent an hour with me and had some very interesting perspective on long term pacing, lead life, pacer settings. I've since switched my care to his practice even tho it's an hour from home, well worth it imo to see someone who's an expert on our rare condition. There is a list of adult congenital practices at the link below. I would highly recommend consulting with one at the very least, possibly switching to them like I did. For sure before making any decisions, get input from someone who has other patients like you. 

https://www.achaheart.org/your-heart/clinic-directory/

not unusual

by The real Patch - 2017-09-14 13:44:08

That approach is very similar to treatment regimen for CHF and Cardiomyopathy. They use blood pressure lowering drugs to give the heart a rest in hopes that it will heal/remodel over time. They are reducing the strain on your heart in a different way, but same general principle. I should however note, actual success is not very common except that it does buy time.

His-bundle pacing

by Gotrhythm - 2017-09-14 14:57:07

There is an well-researched alternative called His-bundle pacing. It's designed to avoid some of the problems associated with ventricular pacing. Rather than the two standard leads of dual pacing or the three of CRT, just one lead is placed directly into the His-bundle. The result is virtually identical to a normal heart rhythm. In some cases remodeling of the heart occurs. Significantly fewer rehospitalizations for heart failure are reported.

I have no idea whether it would be appropriate for you but given your admitted research-geek tendencies you might find it worth your while to look into.

Remodelling of heart

by Selwyn - 2017-09-14 18:54:16

The idea of remodelling is practical and is likely to occur with CRT ( cardiac resynchronisation therapy).  In fact, if I had a low ejection fraction I would certainly be looking at this as the prognosis is improved.

A review of the literature on the subject ( with references) can be found at:

https://academic.oup.com/eurheartjsupp/article/6/suppl_D/D66/364386/Reverse-remodeling-in-heart-failure-fact-or-fiction.

European Heart Journal Supplements, Volume 6, Issue suppl_D, 1 August 2004, Pages D66–D78, https://doi.org/10.1016/j.ehjsup.2004.05.019

You should have no doubt as to the practical worth of this. It is probably wrong to wait for things to deteriorate further. 

Hope this read helps your dilemma.

Selwyn

His Bundle Pacing

by Good Dog - 2017-09-14 18:55:45

I agree that HIS bundle pacing is a great alternative. It is known to reverse CHF. The only problem is that not all hospitals and docs perform this procedure. Geisinger Health in Central PA has been doing it for quite a while now. There are many others, but you have to look for them. My doc doesn't do it, but told me he is interested. The Cleveland Clinic won't do it, because they feel that CRT works well (one of their docs explained that to me). They aren't big on changing from a successful procedure. My Doc told me that he thinks that one of the reasons it isn't performed more is that the lead placement needs to be so precise that they sometimes need to call the patient back to revise the placement. So it is not without some difficulties. However, I personally think that the advantages make it well worthwhile.

I will go for it if my 30 year old lead goes bad at some point. I already have two leads though my tricuspid valve. I cannot have a 3rd. One advantage for me is that if I need a new lead, this procedure doesn't require that they extract the old ones. Both leads are placed in the atrium. So there is no additional lead through the tricuspid valve. 

You should do a little research on it.

Sincerely,

David

Wow! Thanks for the quick feedback.

by Irishalways - 2017-09-14 23:46:12

Thanks to all.  I can't believe the great posts in just a day.  Let me try a few quick thank you's and responses here:

TraceyE--We are twins!  It is such a needle in a haystack for congenital heart block--so great to meet you.  I am at Mayo now and will look into their clinic tomorrow and ask my ep about it.  Thanks for the lead.  I looked at the Dec 16 post and the link--both terrific!  Great to know there are centers where we can get more specific care. 

Real Patch--Thanks for the analogy with HF.  It is about buying time so I think the paralell you are drawing is right on.  As you say the likelihood of success is what doesn't seem to be well documented.  My ep admits he doesn't see a lot of folks like me...and wouldn't try the rate reduction on many older patients. 

GotRhythm and David M--I have read some about His bundle pacing and the folks in PA.  I do think it is going to change the face of pacing as the method is perfected and the suppliers get more appropriate leads and devices developed.  For me, it's still too early on method and experience.  It seems proven though from early studies and is a much more natural way to restore ventricular action.  Doc's clearly aren't adopting quickly though even at high volume centers.  Part of my hope in buying time right now is getting a few more years of development out of the way.  My guess is that I may end up with CRT now but be able to switch to leadless HIS bundle pacing when the new device is ready to be replaced.  Like Cleveland, the folks at Mayo are going slow.  I'm sure they will help scale it up but they are not doing a lot of them here either.  One doc I think. 

Selwyn--thanks for the links.  I still have reading to do tonight :-).  First glance is they look to well support the reason folks are telling me CRT is needed.  It does have a well established track record of success.  I have afib so I am at risk not to have as good a shot at a major EF jump but the quadripolar leads are really aiding in success now in a lot of conditions.  Thanks for the guidance and support.

So thanks again all.  I am excited to be joining such an engaged group.  Please continue to comment away.  Things change so fast in the field, I feel like there is always something new to be learned.  Many many thanks.