Dr. Barrett's office sounds unsure as to if I need an TEE...Shannon?

I am at my 6 month mark after having an ablation with Dr. Natale. As he isolated the LAA and did some other work in the right cornoary sinus, I had to go and stay on a blood thinner...in this case, Xarelto. I was under the impression that I would be getting a TEE at this point, to see if I needed to stay on Xarelto. Yet when I spoke with Nurse Practioner there to schedule an appt., she said she would have to see...that "we don't normally do a TEE" at that checkup.

I am hoping to get off of this drug and am now not sure as to whether Dr. Barrett's offiice is really on top of my situation...I SO wish that I could continue to see Dr. Natale, but that's not gonig to happen as long as he's in Austin. (I'm in the New York area).

Has anyone who is now seeing Dr. Barrett had a similar situation? Shannon, what would you recommend I do at this point?

Barb

Its no problem Barb,

Just call the NP and tell her you DO require aTEE ands that Dr Natale told you so because you had a full LAA isolation. I don't know what NP you spoke with at St Luke's but just ask for Dr Barrett, explain to him that Dr N did a full LAA isolation and said you would need a 6 month TEE as part of the normal check up and that is what he will do with a moments hesitation.

You prayers could well be answered before long anyway, but in the meantime, just asks to speak with Dr Barrett directly if the NP can't figure this one out on her own when you tell her you have had a full LAA isolation.

Its possible this is a new NP and its true most EPs do not require a TEE at 6 months since most all of their patients have not had an LAA isolation unless they are doing a large percentage of advanced cases and also are even do LAA isolation themselves. That is why the NP responded that way. Since Dr N was only there for so long, she probably is unaware of the significance of what having had an LAA isolation means as far as absolutely requiring a follow up 6 month TEE.

Call me if you have any more questions on the issue Barb,

Take care,
Shannon

Thanks Shannon. Dr. Barrett actually just called me back and they are scheduling a TEE for me after all, on March 25th. I did mention that I'm hoping I can get off of the blood thinner, and he replied with something like, "well, that's a difficult thing with the LAA isolation". Didn't you say that there's about a 45-50% chance that I might be able to? I know they have to check the velocity..? but am sure hoping to get off of this stuff.

Another thought...as I apparently didn't need to be on a blood thinner before my ablation, does this mean I am actually at MORE of a risk of a stroke now then I was before?

Barb

Hi Barb,

That was quick, I meet Dr Barrett last week and told him about the afibbers gang he was following up on for Dr N. He's a nice fellow and for sure there would be no issue as soon as he heard your request as you now see his response.

yes its roughly a 40% to 50% chance of being able to stop the blood thinner but as we discussed over the phone right after your ablation and reading you ablation report. the odds might be a little less for you due to all the scarring/fibrosis Dr Natale found in your heart during the initial EP study part of the ablation before any ablation took place.

He only had to actually ablate one of your PVs as the other three were completely isolated just from the effect of that much scar around those PV antral areas. This scaring fibrosis is part of the progressive substrate from waiting and extra long time to get an ablation when one is warranted allowing more remodeling to take place. There is also a form of fibrotic cardiomyopathy that can very slowly develop and which itself can be an associated like or even cause of AFIB developing and in which such structural remodeling happens whether or not there is any active AFIB, but much more likely yours if from all the years you had AFIB and it wasn't as much under control as you would have hoped and that structural/electrical remodeling continues to lay down progressively more scar which, in turn, continues to push the boundaries of active AFIB triggering areas of the LA outward toward more distal regions of the LA such as the coronary sinus and LAA.

Often times, by the time the substrate of scar pushes out toward the LAA such that it becomes the most active ongoing trigger source for AFIB, there has also been enough scarring in and around the LAA to have substantially slowed down LAA mechanical function in and around the LAA mouth too as a result of the long term AFIB burden and structural remodeling. As such it is commonly found that people will have a good amount to LAA velocity reduction, and at times enough to require life long anticoagulation for safety.

Most of this group are, by then, on life long AC drugs anyway from the progressive AFIB and such so the question of anti-coagulation is more or less a moot point by then, and their best and only way to get off the drugs is via a Lariat, Watchman or minimally invasive surgery device like the Atri-clip installation .. like me with the Lariat!

I'll keep my fingers crossed that you get a lucky draw and can stop the AC drugs, but you had little choice either way Barb. If you did not get an LAA isolation you would still be having AFIB episodes gradually progressing toward persistent status for good, and would have needed the AC drugs in any event with the amount of scarring found.

Its a blessing that Dr N did address the LAA when he found it to be a significant active trigger in you, especially since you already had a good amount of scar, other wise you might never have known to get your LAA velocity measured to learn what you velocity is.

Without the LAA isolation it would keep you more and more in AFIB and yet with ongoing scar formation continuing to be laid down such that your LAA would very likely become very delayed in velocity before long in any event. Not at least major steps have been taken to reduce your AFIB for the long term, even if one touch up is required at some point and you will either be able to stop AC drugs after the TEE, or quite possibly will either need to continue with anti-coagulation in which case I would go with Eliquis, or you can then explore the possibilites of a Lariat or Watchman for you.

You do have several choices but first things first is the TEE. At the worst case, you will just have to get used to taking an extra pill each day which you are already doing. SO far Eliquis looks to be the most benign of the NOACs and most effective with the least amount of bleeding risk and very few reported side effects so far, so its not the ned of the world either way..

And it is not at all true that you would have been in better shape as far as stroke risk goes without an LAA isolation ablation and off all AC drugs. Being out of AFIB is your best anti-stroke measure. Your degree of progressive scar means that you would every likely have to continue monitoring that over time and then resume AC drugs anyway as soon as your velocity dropped below 0.4/meters/sec from the ongoing progression of scar and dysfunction of the LAA, if it was not already there as it was?

Certainly the LAA isolation does bring the issue to a head and requires you to find out for sure. Make sure you have Conor Barrett use the new 3D TEE they have there so he can also try to capture your LAA morphology or shape during the TEE which is very possible to do with a 3D TEE. that will be a big bonus to now in determining your real world stroke risk and whether going for a Lariat or Watchman might be your best bet as it was for me.

Shannon

Shannon - every time I read or hear about "all of the scarring and fibrosis", it scares me. I feel like my heart is in tough shape, and I might have other troubles down the road because of all of that....hoping that's not expected..

I don't believe Dr. Barrett is doing the TEE himself, as I am scheduled to have it, and then see him afterwards. The nurse practitioner said that the cardiologist would give him the results....I don't know anything about the kind of TEE but I can ask them. I'm assuming if they have that kind then they would use it, no? Remind me again what the better shapes to have are? And how high does the velocity need to be to be able to get off of blood thinners?

I am not familiar with Eliquis....does Dr. Natale now recommend this one instead of Xarelto? If so, what makes it better?

I keep hoping this whole thing is just over and done, once and for all. But I know you always say to be prepared for the possibility that it may not be....for once, I'd like you to be wrong!

Barb

Hi Barb,
Are you having issues with Xarelto or just want to come off it?

Wishing you the Best and Good Luck,

McHale

Hi McHale - No, not having any issues, other than the fact that there are a few supplements that I really want to take, but can't, as they have "blood thinning tendencies". One is an excellent one for endothelial function and blood pressure, including keeping the arteries more elastic and blood from getting 'sticky". I am a little afraid to take it wiht Xarelto as it has ginko biloba in it, which has blood thinnning tendencies....

How are YOU doing? Did you need/have a TEE done yet?

Barb

Hi Barb,

Your heart of fine so no worries. The fibrosis is not that uncommon in people our age, especially women. Your LVEF Left ventricular ejection fraction is still in the normal range and is good so don't fret over this, its just that it adds more of an emphasis on getting your TEE and, if need be after the results, continuing on with the anti-coagulation program.

Its not a real worry issue when you tolerate the meds as well as you do, especially in the coming year or so when the quick reversal agent for Factor Xa drugs should be approved and in place in ambulances and ERs around the world, or at least in the modern world.

The best shape of LAA is Chicken Wing, all others are more progressively more pro-thrombotic starting with Windsock, Cactus and finally Cauliflower as the most dangerous shape to have. Basically all you need to know is if its a Chicken Wing, you have a big reduction in stroke risk from the LAA compared to the other three which all have an increased risk over Chicken Wing ranged from 4 times greater risk with Windsock and Cactus to 8 times greater risk with Cauliflower.

And if your main concern with the NOAC drugs is not being able to to take Gingko ( maybe) that is nothing to worry about either. There are number of other supplements you can take that are better for endothelial function than Gingko in any event like Pycnogenol, Pterostilbene, Grape seed extract and a few others, so no worries there either.

In fact, this is a "Not to worry" scenarios for you across the board. Yes its not ideal to have to deal with LAA issues, but its such a great thing that you chose the right EP who could deal with it when he found that is was a key issue for you. Otherwise your heart would still be flipping around big time even after the blanking period while you have had a very easy ride on the heart front for the most part since your ablation.

None of us can ice and choose our condition once it has manifest and neither can your EP, they just have to be able to address whatever they find and you choose a man uniquely qualified to address a case like yours. That they may be one more step in the process is not a big deal, really, and is par for the course in any event for people with more advanced atrial substrate modification.

Just focus more on all the blessings from your excellent decision and the quiet heart you are enjoying now rather than fretting too much over what might happen when even if your LAA flow velocity is too low to avoid having to adapt to the anti-coagulation issue, not much will change as you are already taking Xeralto and for all indication not having any issues with it at all.

Obviously we all want to stop any such drug we can, and if you need to deal with this issue long term there are other options for getting off the drugs too and more are on the way and it will very likely become much easier to get approved both anatomically and by insurance for things like the Lariat as time moves on and the experience level with these new devices continue to increase as it has been.

All is all, as far as AFIB goes things are looking pretty good for you Barb, and you deserve that after all the hardship you;ve had to endure the last couple years that we all have sympathize so deeply with you about.

Enjoy this time as much as possible and dont let the upcoming TEE regardless of the results add unnecessary and totally unproductive worry where none is warranted.

Cheers!
Shannon

Thank you Shannon for your great support and encouraging words You are of course right - I have had a pretty easy time of it since my ablation. Other than a few blips here and there (especially if lying on my left side), things have been good. And I am very thankful that I found Dr. Natale - through this board - as I completely trust him and know he is one of the very best in the world. As it turned out, I needed a really great doctor to be able to do the LAA isolation and have it turn out so well. I never would have known about him had it not been for the board, that's for sure.

The supplement I want to take again has a lot more in it than ginko, but that's the only ingredient in there that raises a question when taking a blood thinner. I will have to figure it out once I know more about the shape of my LAA and the velocity of the blood, which I should find out on the 25th. I will try to focus more on all that is good and not worry so much, which is my tendency...

Thanks also for your understanding and empathy regarding the loss of my husband, Doug. It was a terrible year for a number of reasons, that being the biggest one by far, but I am thankful that a major health issue for me (Afib) was addressed and is not something I have to deal with on my own now. I am very glad he was able to be there with me for all of that too.

The kids and will be in California for a week starting on Thursday, first for a family wedding, and then for an added vacation. We all need it!

I will let you know when I get the TEE results.

Best to you ~ Barb

Hey Barb,
I'm doing well, still on Xarelto as I just passed the 9 month mark. I do get the occasional run of extra beats or pacs but nothing to be concerned about.
No I don't need a TEE as I had no work done in my LAA and didn't have much fibrosis. I forgot about your extensive ablation and the scarring from your fibrosis in your LA. Don't worry about it it's just part of life's journey but at least your AFIB is "cured". You learn to accept things as you get older, and remember we went to the BEST after all the contemplating we did trying to figure out who to go with.
We were so LUCKY he came to us! What a pleasure it was seeing him at the Carlton-Ritz in January along with Dennis. PRICELESS!
.
I think you can enjoy a few Pinas as I enjoy a few beers on the weekends.

McHale



Edited 1 time(s). Last edit at 03/06/2014 07:46PM by McHale.