His Bundle pacing what is worth?

So you made need to scroll back to my post titled "two devices" to get caught up.  Brief update, my insurance covers only emergency room visits out of state, no consults, appointments anything.  The his bundle pacing sounds like a real long shot as to whether or not it will even help.  My EP who did his fellowship under the top guy at Mayo says he will do the procedure but he has 2 fails out of 3 attempts at the procedure, his partner who has done 11-12 (not sure fail to success ratio would sit in).  Do you guys think the long shot is worth the risk especially with a EP with only 1 successful procedure?  I should add that the costs of going to Mayo are to expensive for me, especially considering I need to concentrate on future expenses in the case I get a heart transplant or LVAD.  I do plan on talking to my advanced hf doc/transplant doc to see what his thoughts are (attempt to get a prognosis of some type of even vauge) and see how long I may be waiting for transplant and if he thinks I will even get one in time etc.  I would also like to know what he thinks about that idea that my acquired left sided heart failure is solely from pacing and not damage to the myocardium from the endocarditis.  Either way it's been over 5 year 100 percent paced so whether the damage is from pacemaker or infection I kind of feel like my myocardium is screwed and is at the point where the cells are running out of telomeres and going into apoptosis.  Thoughts?


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by Terry - 2021-04-08 17:07:38

There are reports of heart failure reversal on the "His Bundle Pacing Papers" page: <His-Bundle Pacing Papers – His-Pacing.org (his-pacing.org)> and scroll down to "If I have heart failure...can my heart heal itself?" Also watch Karen's story on the Home Page. No need for a heart transplant for these folks, and I hope you will enjoy the same outcome. I would go to an EP who has more experience over the years, for an implant success rate of perhaps 90% of attempts. They are now everywhere; no need to go to Mayo anymore.

Terry

Thank you Terry!

by asully - 2021-04-08 17:59:26

Unfortunately my insurance will not cover out of state procedures and I already with the 2 best trained guys in Georgia in regards to His pacing. My current EP did his fellowship under the top EP at Mayo.  He was quite honest about his confidence (or lack of) in his abilities which is why he wanted me to go to Mayo.  He said he doesn't know of anyone else in Georgia with more training or experience (and I believe him).  I do see lots of articles on the web link you gave me, thanks.  Unfortunately most of those papers I looked at are only in reference to pacing-induced cardiomyopathy.  The working theory for the last six years is that my endocarditis caused the damage to my heart (I have had HREF ever since).  The question now is whether or not the pacing has caused my HFrEF to progress, or is it just the natural disease process from the damage of endocarditis and two valve replacements, even the EP said he has no idea. He said there is a high likelihood that it won't change my HF at all, a small chance it will slow the progression (meaning just a longer wait for a new heart), and a very very small chance it could reverse my HF.  And this is if every cardiologist who has seen me over the last six years was wrong.  In addition to that achieving his bundle pacing will be very difficult in my case due to my porcine tricuspid valve and could potentially damage the valve speeding up my already advanced HF.  I am sorry I know this is a lot of information,  I am just at a loss, I don't know what to do.  I feel like it's a gamble either way.

Which path to take

by Gemita - 2021-04-09 04:45:37

Asully, you are in the best place at the moment "doing nothing" until you have received further advice from all those responsible for your care.  Also give more time for your ICD to show results and give your body time to really heal might also help.  It is surprising what the body can do all by itself if we give it the right conditions.  Have you provided the best conditions for healing to take place I wonder?

It is clear to me that you are still somewhat uncertain what is causing your worsening heart failure and until this question has been adequately answered, any treatment you receive can only be experimental.  As long as your condition can be stabilised, you have precious time to better consider all your options.  However, sitting on the fence for too long can bring its own set of problems, so we have to use the time productively as you are doing.

From your history what stands out most for me is your doctor's inability to control your tachycardia and related symptoms, caused in part or wholly by your previous heart/health condition.  We all know that if tachycardia cannot be controlled it can lead to heart failure, or if present, worsening HF.  I expect if you were able to achieve a steady, normal heart rate, your symptoms would ease and the HF symptoms would improve without any further intervention.  That is one area that I would absolutely focus on.  I know when I get tachycardic, my heart really struggles to keep up.  Have your doctors really exhausted all avenues to stop your tachycardia?  Would/could another EP study help to pinpoint a specific area to focus on I wonder.  The more information we can get the better.  To wait for a heart transplant, LVAD and all that entails wouldn't be my priority.  I would work with what you have got and you have still got much to hold onto Asully.

HIS bundle?  If your discussions draw blanks on the main cause for your worsening heart failure and your tachycardia cannot be controlled, you have nothing to lose and everything to gain by looking at HIS bundle, even if it is a one chance in three with your present EP - better than 0 chance of success by not trying.  You like and trust your current EP, don't you.  He may not be the most skilled you can find out there but he sounds a good, caring person but he has to know that you have confidence in him for it to work.  My preference would be for you to find a way to have it done at Mayo or for your EP to ask for help from Mayo, in whatever form this takes?   

appeal?

by Tracey_E - 2021-04-09 09:20:03

If your doctor feels another clinic out of state is better suited to help you, and it might avoid extra surgeries and possibly a transplant, you might want to try appealing with your insurance company. It's an uphill climb, but people have been successful. 

Appeal

by AgentX86 - 2021-04-09 14:44:43

It's certainly worth a try.  If your cardiologist strongly recommends it, and perhaps drops the suggestion that it may save (the costs of) a heart transplant, maybe they'll come around.  Many have received Watchman devices arguing the long-term costs of NOACs.  Like tracy said, it's worth a try and there is little to lose.

That said His pacing is reported to be  superrior to CRT but I wonder if it's that much better that it's worth an upgrade.  I'm not saying it doesn't, just wanting to understand the specific issue.

Your valve

by Terry - 2021-04-09 14:57:29

Asully,

You mentioned your valve. But the His bundle resides on the atrial aspect or the tricuspid valve anulus, so doctors pace it from the atrium as opposed to the ventricle. Nice that it can avoid passing through valve. That prevents valves, including native valves, form leaking. There are papers on that too, if you would like.

According to the literature, the preferred His bundle pacing leads are offered by Medtronic. If you can call your local Medtronic sales rep, she can tell you who has the most success. I suspect all university hospitals in Georga now do His bundle pacing.

Terry

Valve

by AgentX86 - 2021-04-09 20:20:17

I asked ASULLY about my EP at Emory University Hospital but her EP said they didn't do it.  I found it odd because my EP has written a number of papers on His pacing.  I intend to ask him about during my next appointment but that's some time off and probably won't help her.

 

His pacing EP

by Terry - 2021-04-14 17:44:54

Asully,

Took me a while, but I got a Medtronic Sales Rep's referal to an experienced His pacing practitioner in Gainesville, Dr, Joon Ahn. (770) 534-2020. If that is a couple hours drive and you need someone closer, I'll send you a private message regarding options.  The Rep I spoke with volunteered to help you find a Medtronic Rep closer to home if needed.

Terry

Thanks To everyone!

by asully - 2021-04-23 20:07:33

Sorry I am late to reply but after I posted this I got pretty discouraged and decided to not think about it for a few weeks.  I told my EP I needed time and he was ok with that however now is pushing an upgrade to an ICD (opposite of what he had said in our previous conversation).  I just told him I wasn't ready to make any decisions yet.  I see my advanced HF/transplant guru in a week and a half so hopefully I can get more information.  I then see my interventional cardiologist a few weeks later, he doesn't do much but keep an eye out for me (he's the big boss at my facility), and he may have some information or possibly strings to pull; or not.  I figure it's worth talking it over with him.  Gainesville GA is not far for me, I will get in contact with the Medtronic rep (all my devices and my two artificial valves are Medtronic, so I think I would be considered a valued consumer lol).  Thank you everyone for the ideas and advice, your the only people I have in my life who truly understand what all of this is like.  I am blessed to have you in my life even if it's over the internet!

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