Two devices?

Can you tell us a bit more?

by Gemita - 2021-03-30 20:41:26

Are you talking about adding LVAD (left ventricle assist device) and retaining CRT?  Personally I would see nothing wrong in wanting to keep both in place (as back up system).  If the two devices don't improve your situation the power can always be turned off in one to see the effects of running one device at a time but if you take one system out your doctors will never know if the two devices together might have made a difference. Have any studies been done on this question?

Just in case you are talking about CRT with LVAD I found this link:

https://www.nature.com/articles/s41598-020-59117-w.pdf

I appreciate we are not comparing like with like but when I got my pacemaker, my EP still wanted to leave my Reveal Linq monitor implant in place, because he felt two systems were better than one for monitoring my condition and the Reveal Linq proved outstanding for the job.  

Sorry Gemita, I probably should have given more detail.

by asully - 2021-03-30 22:02:13

Luckily not looking at an LVAD yet, hopefully not anytime in the immediate future.
 

I currently have the crt-p in my abdomen, they want to put a his-bundle device on my shoulder or side and add new leads.  They intend on leaving my current leads and CRT-P in place in their words "In case the his-bundle pacing fails." This is as much information I have at this time, I go in for a consult on thursday.  The EP also said "I can send you up to one of my colleagues at the Mayo Clinic to have it done if you would like."  I also found that odd,  almost seemed like he did not have confidence in his own ability to perform the procedure.

Oh dear I got that wrong

by Gemita - 2021-03-31 02:49:59

Asully, well it sounds as though you need to get a second opinion in any event but perhaps you might want to choose your own second opinion if you do not trust or have lost some confidence in your present team.  

I still think it is a good idea to have two systems in place, two tools at your disposal but you clearly need to get all the facts.  Certainly considering HIS bundle + CRT seems kinder as first step instead of the alternative of LVAD/heart transplant.  There are a few studies around which seem to show a benefit of having both HIS Bundle/CRT in place in improving the hemodynamical and clinical condition of patients, particularly with an arrhythmia (like for instance AFib).

Which clinic does the most HIS bundle placements.  Would it be the Mayo and do they have the best EPs?

I note from your history that you only recently had a replacement CRT device placed abdominally so perhaps this is also a reason why they want to leave it in place and to compare systems since CRT can take some considerable time (up to a year?) to show any real benefits.  Also, it might be less traumatic perhaps to add another device, than to extract the old one and then to place a new system straight away, especially if you are feeling poorly at the moment.  And then supposing the HIS bundle system is tricky to get into the optimum position for you to fully benefit, would you be better off or worse off?  On balance I would be inclined to leave your CRT in place to be on the safe side and then go with the additional upgrade to HIS bundle pacing, but these of course are questions for your EP and any new team, not for me.   What are your thoughts Asully?

thoughts

by Tracey_E - 2021-03-31 09:29:41

If moving from abdomen to shoulder, it's not uncommon to leave the old one in. My understanding is it's not so much for a back up but because surgery is less invasive.

I would not see the offer to send you to Mayo as a sign your doctor isn't good, but just the opposite. Even the best doctor's aren't experts at everything, and I respect the ones who can admit  someone else is better at something than they are and send us to someone more specialized. HIS pacing is not that common yet so if he wants to send you to to Mayo, that's what I'd do. It doesn't get any better than Mayo. 

HIS bundle leads

by jds66 - 2021-03-31 15:53:28

This is a bit off the track, but relavent. My 2 Medtronic reps are suggesting I leave the RV lead active even after I turn on the LV Bundle of HIS Lead. (yes, I had the HIS lead put in, but it was inadvertenly turned off during an interrogation with my EP and strangley enough, I actually felt better with just the standard Atrial and RV lead pacing me. So, my HIS lead sits, un used, for now)

The Medtronic reps said that the turning off the RV lead after activating the LV HIS bundle lead would save so little battery, that it makes more sense to leave it active and on, as a backup. 

Good to have backup plans so when the first plan fails, you are alive to go to plan 2. 

Thanks everyone for responding!

by asully - 2021-04-01 12:46:15

Hearing from all of you has given me some comfort that this is not unheard of.  I leave in about two hours for my consultation with the EP on the topic.  He is also turning up my upper rate limit as high as the device allows (picture me jumping up and down in excitement about that change), upper rate limits have been a bane of my existence time and time again.  I plan on thoroughly grilling him today, I learn so much on this site so when I do go to these appointments I know what and how to ask about it, it really makes a difference.  Not thrilled about having a device on my shoulder and side (I have been blessed the last 5 years that it was in my abdomen).  It might sound vain but I just don't want the darn thing visible.  I asked about sub-muscular on the phone but he doesn't know if we can because *ahem* my ladies aren't real and the implants are sub muscular as well, but he did say he was going to bring a plastic surgeon in to consult and see what we can do to keep it less visable (and to prevent me from bumping and rubbing on it).  I am very thin in my upper body so any device will protrude significantly (I have that problem with the abdominal one already).  I think I will plan on a second opinion, plus I am going to talk it over with my advanced heart failure doctor and see what his opinion is.  I really do not want extra procedures if I do end up on the transplant list (I have had so many over the last year).  I think they have put me under five times in the last year, uhg.

Post consult...

by asully - 2021-04-04 00:41:25

So we talked about adding the his bundle pacemaker and leads. He thinks that my long term RV pacing is actually what is causing my sever systolic HF.  However, he also said there is no way to know if it's from the pacing, permanent damage to the myocardium from my endocarditis (which has always been the assumption all my doctors were working under).  And if it is that small tiny chance it's from the RV pacing, there is only a small chance that it hasn't caused permanent damage already that his bundle pacing wouldn't be able to fix.  In addition to that he said that his bundle pacing is only successful in a small percentage of patients, is highly technical to acheive, and that they wouldn't know until surgery if my his bundle is not already damaged from my tricuspid replacement when my AV node was damaged (he says they just can't tell in cases like mine unless they try).  So then he explains he has only performed 3 total his bundle pacemaker procedures and only one was actually successful (meaning that he was only able to get the lead placed in working in 1 out of 3 patients.  He has a partner who has done 11 or 12 but he didn't know how many were successful and he said if I chose to do it his partner would assist.  He openly admitted that he would prefer I go to Mayo Clinic where he trained because he just isn't that expierience and my case is much more complex than most due to my advanced hf, and two artificial valves and second device and leads.  Problem is my insurance won't cover out of my state (and I can't afford a 300,000 dollar procedure). And there is nobody else in my state besides him and his partner who have any better expierience and training.  He also said I would need to decide if I wanted an icd placed at the same time because they would already be running a wire through my artificial tricuspid (which is why he has been hesitant on doing an icd quite yet, he doesn't want to damage my artificial valve (they aren't as sturdy as originals).  He told me to contact my insurance and see if I'm there is anyway they will cover out of state (I already know they won't, it's a marketplace state HMO, not a PPO or POS or multi state plan).  The. He said if I can't get it done at Mayo it was up to me if I wanted to decide to do it and to just let him know what I decide.  Too me it all sounds like a really long shot in the dark that it may even work.  I don't want to refuse possible options while I wait to be sick enough for transplant but I also don't want to have a procedure that has a high likelihood of failure (and to me it seems like it's way more likely to fail than succeed at all).  Maybe I am being negative, please let me know what you all think?  I am really torn...I also don't know how many more time I can go through the process of getting my hopes up again to only be brought back down.  Any advice, support, information, or suggestions would be greatly appreciated!

I would still seek the opinion of the Mayo clinic

by Gemita - 2021-04-04 04:17:27

Dear Asully,

I am so sorry you are no further ahead and still having to ask challenging questions.  I can understand you don't know which way to move for the best ... and then there is the matter of cost.

In your shoes, I would still seek the opinion of the Mayo Clinic even if you are unable to have any procedure actually carried out there because of insurance coverage.  By seeking their advice, they could at least give you a considered  opinion, maybe they might even provide your current team with  advice on how best to perform any procedure, what to avoid, maybe even to provide video link assistance.  It has to be worth a try to overcome the cost of being under their care.

A consult with Mayo shouldn't cost an arm and a leg surely and at least you might be in a better position to make an informed decision afterwards on the best way forward.  Prepare yourself well for your appointment, ask what essential tests you might need to help assess your suitability for HIS pacing and likelihood of success, whether they could give video link assistance to your team if required and whether your insurance company would cover you?  Mayo could give you an opinion on the ICD as well.  I would keep going Asully.

I have been at rock bottom with cancer and unkindly told not to spend money on seeking cures when there were none, but I never never gave up, never never stopped believing that I would find the answer for me. And I found a wonderful surgeon to help me who had recently lost his own wife to cancer.  Actually his name was Mr. Savage, but he was the kindest, most gentle, able surgeon I could have found.  I was very luck and have never had a recurrence of metastatic melanoma, quite incredible when I was initially given such a poor prognosis.  So seek the opinion of the very best, the Mayo, and never never stop believing in your own ability to take the right path Asully.  You know you have us all on your side

His pacing

by AgentX86 - 2021-04-04 12:41:22

If he's had only one success out of only three attempts and his partner has only attempted eleven or twelve His pacings, you really need to go elsewhere.  I know there are groups, here, with more His pacing experience than this.

Do you know where AgentX? Thanks Gemita!

by asully - 2021-04-05 13:53:10

He said that he knows for sure Emory doesn't have anyone who has as much training or expierience and of corse well star and the other little one don't.  He didn't mention Kaiser? I don't think you can go to Kaiser unless your on their group plan. 
 

Thank you both for responding, I am going to think on it till my next appointment with the heart failure/transplant doc in about 4-5 weeks, ask him some more questions.  IMO each speacilist wants to be the one to "solve" a case.  The valve surgeon thinks that's the root of all your troubles, the EP thinks it's your pacing or SVT, the general cardiologist thinks you need more "new" meds or higher doses and it will go away....haha anyways I definitely have a lot to think about, I also meet with my interventional cardiologist in June (the man in charge) he may be able to help find some solution...pull some strings maybe, but maybe not.  I just don't see this being only a pacing problem, the doctors here haven't read all my notes from when I had MRSA endocarditis, I don't think the know how bad it was.  I would be shocked if their wasn't permanent damage from the infection.  It was everywhere (sepsis), including my lungs which were full of 2 liters of fluid, I had a thoracotomy first for empyema (I prob spelled that wrong), and two days later the sternotomy for the tricuspid and to remove other infected heart tissue.  I was throwing septic emboli all over my body for the two weeks I was in ARDS and on life support.  I was extremely lucky to have survived.