Welp... blood clot. no ablation

I take Xeralto. Religiously .. with food.. every night. They did the TEE prior to my ablation yesterday and yep.. they found a blood clot. It isn't in a terrible place so they changed me to Eliquis and will check it again in 6 weeks. They were going to change me to Pradaxa but then they said insurance doesn't cover it. But then I found out they did. (It was a big ole show down that wasn't fun and I am on Eliquis for the time being.).

So I see Dr. Joel Kahn and touched base with him. He is all about diet and supplements (but does not shy away from medication). He said the change to Eliquis plan was good- he didn't mention diet and supplements but I am reading about that online. What helps. What hurts. I just emailed him again but wondering anyone's additional thoughts on blood clots and all of that. ???

Like I said- I 100% took my Xeralto. It would be usually right around 7 pm. But the EP said it was more important to take it with food than to get it at the exact same time. So it would flxuate between say.. 530-8:00.. with the end points being rare.

I talked to our team's cardiology pharmacist and she said Xeralto is 'as effective" as warfarin. But that Eliquis is 'better performing' than warfarin. She doesn't like the Pradaxa because 40% of the people have GI upset and many come off of it. So I think Eliquis is the way to go but it sounds like Pradaxa works on the clotting differently. ??? Any chemists out there??

So no ablation at this point.. . I asked about trying a cardio version and they were OK with that (which means the clot really can't be in a bad place). But I was half under and didn't feel I could make good decisions. So declined. Oh and they did do a double contrast CT scan after...so that will give more info.

So I guess my question is.. diet and supplements and blood thinning / clotting.. any thoughts?? (outside of the Warfarin stuff.. because I am not on that.)

Amy

Amy sorry for that news but sounds like some silver lining. After my LAA isolated ive been eliquis but i was on it prior too. Ive had a ct in march and Austin and a tee in july prior to a cardioversion. I talked to Dr Natale about Pradaxa. No. He said eliquis until i come back for TEE or a touchup or both or a Watchman or all 3 ??? Im in no mans land right now
But zero arrhythmias since 8/6. As far as diet or other means at preventing clotting? Thats tough. More well advised may chime in. Using any other agents with eliquis can be ill advised. Ive read some studies on olive oil. Look at Life Extension Foundation. So i use a little ea day. But im off fish oil vit E aspirin nsaids and obviously natto. I do exercise alot and walk an hour about everyday. Praying for you and a great outcome. All this requires patience which im bad at. I didnt know they can cardiovert with a clot but maybe location makes a difference?
Tom

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bettylou4488

I talked to our team's cardiology pharmacist and she said Xeralto is 'as effective" as warfarin. But that Eliquis is 'better performing' than warfarin. She doesn't like the Pradaxa because 40% of the people have GI upset and many come off of it. So I think Eliquis is the way to go but it sounds like Pradaxa works on the clotting differently. ??? Any chemists out there??

So I guess my question is.. diet and supplements and blood thinning / clotting.. any thoughts?? (outside of the Warfarin stuff.. because I am not on that.)

Hi Amy,

My understanding is the "blood thinning drugs" don't dissolve clots. They just prevent them from getting bigger or having new ones form. Your body's own mechanisms are what dissolve the clot. Also, none of these meds are 100%. From memory, I remember warfarin reduces stroke probability around 50%, so far from 100%. It is like seat belts - they don't guarantee you survive a crash, they just materially improve your odds.

There are "natural" approaches to blood thinning, but combining them with the meds may not be a good idea. You can certainly go too far in that direction and have bleeding risk. Afibbers.org founder, Hans Larsen, wrote a book on the topic including more "natural" approaches. [www.amazon.com]

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GeorgeN

Hi Amy,

My understanding is the "blood thinning drugs" don't dissolve clots. They just prevent them from getting bigger or having new ones form. Your body's own mechanisms are what dissolve the clot. Also, none of these meds are 100%. From memory, I remember warfarin reduces stroke probability around 50%, so far from 100%. It is like seat belts - they don't guarantee you survive a crash, they just materially improve your odds.

There are "natural" approaches to blood thinning, but combining them with the meds may not be a good idea. You can certainly go too far in that direction and have bleeding risk. Afibbers.org founder, Hans Larsen, wrote a book on the topic including more "natural" approaches. [www.amazon.com]

Thanks. I have kindle unlimited so that book is free for me right now even. LOL. I am going to touch base with the cardiology pharmacist on Monday as well. One thing I have added recently (in the last year) were supplements. She is the whip on interactions.. but in the past our conversations were around dofetilide. But I also have never been in afib for this long. Thanks again.

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bettylou4488
She is the whip on interactions.. but in the past our conversations were around dofetilide.

There could be an increased risk of bleeding if you add in the natural stuff in combination with a pharma anti-coagulation med.

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GeorgeN

She is the whip on interactions.. but in the past our conversations were around dofetilide.

There could be an increased risk of bleeding if you add in the natural stuff in combination with a pharma anti-coagulation med.

I understand . I am not going to go willy nilly. I also just contacted another EP I got an additional opinion from before all this. She is a DO and may have a better handle on some of that. I skimmed the book and zinc even came up as an issue- (as being clotting potentially). I have been taking more than usual. I need to dig deeper but my mind still isn't 100% back from the anesthesia.

Im also second guessing myself because I declined a cardio version. They could have done it right there but I sat there under anesthesia wondering...wait? you can do a cardio version while having a blood clot? And also wondering because before he said it wouldn't work (because the first one didn't work.). But I was three sheets to the wind when they asked me.

Did they tell you where the clot is? Since they're so unconcerned and they were willing to cardiovert you, I'm guessing it's on the right side and it's fairly small.

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Carey
Did they tell you where the clot is? Since they're so unconcerned and they were willing to cardiovert you, I'm guessing it's on the right side and it's fairly small.

yes they did .. it's in the notes somewhere. I barely remember the conversation but my brother said they were the ones that brought up the cardioversion. I don't know.... maybe I should have but honesty I was in no position to even make that decision. They did the double dye CT scan.. the report is in my portal but I refuse to look at it on a Sunday. They were going to do it outpatient but I begged to just have it done before I left. I guessI am an example of why they do TEEs

I am curious-i should put this as a separate post.. maybe I will. I have had TEEs at two hospitals. My preferred hosptial uses lidocaine gargle. The other does nothing. I mean it is disgusting and quite frankly a bit scary!! How can there be such a difference.


I'm touching base with my EP and congenital cardiologist tomorrow. I hope.

I had a TEE in 2010 and one in july prior to cardioversions. No lidocaine and no sore throat or sore anything
Just my experience

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bettylou4488
I have had TEEs at two hospitals. My preferred hosptial uses lidocaine gargle. The other does nothing. I mean it is disgusting and quite frankly a bit scary!! How can there be such a difference.

Nothing?! So how do they avoid triggering your gag reflex and making you vomit? That's downright barbaric and potentially dangerous, and the lidocaine gargle isn't much better. Next time demand propofol. I've had 4-5 TEEs in three hospitals and have never been conscious for the procedure.

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Carey

I have had TEEs at two hospitals. My preferred hosptial uses lidocaine gargle. The other does nothing. I mean it is disgusting and quite frankly a bit scary!! How can there be such a difference.

Nothing?! So how do they avoid triggering your gag reflex and making you vomit? That's downright barbaric and potentially dangerous, and the lidocaine gargle isn't much better. Next time demand propofol. I've had 4-5 TEEs in three hospitals and have never been conscious for the procedure.

I'm sorry I was not clear. I was saying that the one does lidocaine PLUS propofol. The other does NO lidocaine but propofol. sorry 'bout that. I obiovusly don't like the lidocaine .. LOL!



Edited 1 time(s). Last edit at 10/24/2021 03:55PM by bettylou4488.

Ooooh, okay. That's very different and I owe some hospital an apology for calling them barbaric. I've never had the lidocaine. Don't see the need during the procedure since I'm unconscious anyway, and I've never come away from one with a sore throat.

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Carey
Ooooh, okay. That's very different and I owe some hospital an apology for calling them barbaric. I've never had the lidocaine. Don't see the need during the procedure since I'm unconscious anyway, and I've never come away from one with a sore throat.

Yea that is why I don't get. Does it really get them a better picture?!?!? It is total torture and you feel you can't breathe. I wish I could refuse it but I don't think they would do it then. But I might just ask next time! I want to take a poll almost to see who uses that stuff and who doesn't. LOL.

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bettylou4488
Yea that is why I don't get. Does it really get them a better picture?!?!?

Not at all! All it does is numb your throat to stop your gag reflex, and I don't see the point of that if you're unconscious, which does the same thing.



Edited 1 time(s). Last edit at 10/24/2021 11:37PM by Carey.

I just love this site! Thank you to all!!!

Well.. finally after many emails and calls I had a video call with my congenital doc. The CT showed nothing. With my whack-a-doodle physiology he thinks it was an artifact. The EP argues it was there but the CT was done after.. and it showed nothing. So I guess I re-sign up. We talked a ton about rate control... I am seriously considering that. I am very thankful that they did the TEE and that they stopped it-- shows they are on the ball (as they should be) but still I am glad they were conservative about it all.

That's very good news. The CT trumps the echo.

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Carey
That's very good news. The CT trumps the echo.

I concur. the EP still "insists" there was something there. My congenital doc .. thinks it was an artifact. Now I have to decide what to do. I am making another appointment for the ablation. I have visited with Natale (vid appointment) but because of all my congenital complexities I really want to stay at the center I am at. But my congenital guy .. who still thinks I should give ablation a try.. isn't too positive about it. (Statistically speaking). I know Carey you have also mentioned about persistent not being a great place to be with ablations. Natale also said it was not an easy fix with me. I am not doing too terrible with rate control but I am just shy of 55 yo.. a bit young to be in rate control for always. I don't tolerate beta blockers but doing OK with the cardizem (180 extended release with an occasionally extra 30 mg). I've done most of the drugs (I"m still taking Tykosin because I don't want a 3 day stay to get back on it after an ablation and all the EPs think I will need something). I did meet with a local EP that is trialling the pulsed.. but I do not qualify. Anyway.. to be honest I prayed about all this up front and said Lord if I am not suppose to do this.. stop it. And I feel He did. I don't know if it was in general or just for that day.. but I am not upset that it happened. I just have to think about what that means for trying again.

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bettylou4488
the EP still "insists" there was something there. My congenital doc .. thinks it was an artifact.

How far apart was the TEE and CT? Maybe they're both right. Imagine that what they saw on echo was the small remains of a clot that had already been mostly absorbed, and then by the time they did the CT it was completely absorbed. Pure speculation, obviously, but if the CT didn't see it then it's just not there now no matter what they saw on echo.

As for the ablation decision, I can understand why you're hesitating. Since you're relatively young and the rate control is working for you, you've got time to wait. Non-drug treatments are improving rapidly, so waiting might make sense for you, especially since you're such a complex case.

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Carey

the EP still "insists" there was something there. My congenital doc .. thinks it was an artifact.

How far apart was the TEE and CT? Maybe they're both right. Imagine that what they saw on echo was the small remains of a clot that had already been mostly absorbed, and then by the time they did the CT it was completely absorbed. Pure speculation, obviously, but if the CT didn't see it then it's just not there now no matter what they saw on echo.

As for the ablation decision, I can understand why you're hesitating. Since you're relatively young and the rate control is working for you, you've got time to wait. Non-drug treatments are improving rapidly, so waiting might make sense for you, especially since you're such a complex case.

They were hours apart. They wanted to send me home last Friday but I begged them to just do it before I left. The EP never did call with results. It was in my portal but who wants to look at that and find out something horrible and not be able to get a hold of a doc LOL. It was my congenital doc who I adore that finally got with me. I think he had a lot of emergencies this week.. he apologized for forgetting about me. (I guess it is good my problems are small enough to be forgettable.).

Doesn't waiting mean the ablation is less likely to work? That is my primary reason for not wanting to wait but maybe I am wrong on that. Are you talking about pulsed or other things? I research everything for my son's issues but I just get weary of it and haven't done a ton of research on all of this. I did sign up for the afib conference a few months ago and haven't watched any of it. Maybe there are some sessions on there I can watch and catch up.



Edited 1 time(s). Last edit at 10/30/2021 08:27AM by bettylou4488.

Well, only hours apart pretty much kills my theory, but I'd definitely still believe the CT over the echo.

No, waiting won't make the ablation any less likely to succeed, but if it becomes truly persistent (>1 week), then decision time is upon you. Natale already said you'll be a difficult case, so I wouldn't wait much longer after that.

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Carey
Well, only hours apart pretty much kills my theory, but I'd definitely still believe the CT over the echo.

No, waiting won't make the ablation any less likely to succeed, but if it becomes truly persistent (>1 week), then decision time is upon you. Natale already said you'll be a difficult case, so I wouldn't wait much longer after that.

it's been longer than a week....



Edited 1 time(s). Last edit at 10/30/2021 11:52AM by bettylou4488.

Okay then, you are in persistent afib. Next step is longstanding persistent (>1 year). I would definitely consult with Natale on this again and decide which way you want to go. You can attempt another ablation or you can accept permanent afib for life. Given your complexities, I really don't know what I would do in your circumstances.