Blood clot in atrium appendage - Atrial Fibrillati...

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Blood clot in atrium appendage

Barb1 profile image
28 Replies

was discovered on Monday whilst having a TOE under GA before 4th ablation. Procedure was aborted and I am now on increased warfarin for 4-6 months before proceeding again. My EP seems to blame the Dabigatran that I was on for a few months before although all the reports say that it is better at preventing strokes. I am thinking that it could have formed in the 7 days that I was not fully anti coagulated because of the change over. Either way, I now feel that I am living with a time bomb and I have not a hope in hell of getting travel insurance for our trip to the Far East in January. Also my GP will not allow self testing. Life has gone belly up yet again.

Anybody have an experience like this?

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Barb1 profile image
Barb1
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28 Replies
Rellim296 profile image
Rellim296

Hi Barb1. This is one of those is the glass half full things. How devastating to wake and find that not only were things not going to go ahead but that you had a new and unwelcome situation to deal with. Double whammy. But then again how lucky it was discovered before it has caused damage. I hope I'm right in thinking that it may have been treated with something like heparin? A clot is what we all worry about. But your EP seems to be prepared to proceed in a few months - which may affect your trip to the far East. All tedious for you. No doubt someone on the forum will have something to say about travel insurance.

All the best.

Barb1 profile image
Barb1 in reply toRellim296

Yes, kind of 'aren't I lucky' but 'how unlucky!' EP wants me to be in range 3.0 - 3.5 with warfarin aiming to dissolve the clot.

Rellim296 profile image
Rellim296 in reply toBarb1

Hope that will be speedy and effective. No doubt they are keeping an eye on it.

I'm sure someone else must have something to say!

Loo53 profile image
Loo53

Sorry to hear this Barb. Don't know what to advise but I'm sure others on here will. Let us know how you get on what a bummer!

dedeottie profile image
dedeottie

It is a bummer but thank goodness they found it before starting the procedure. I would be feeling the same as you though. No help I know but comiserations. X

rosyG profile image
rosyG

Barbara it was good to meet you at Surrey asg tonight and I hope Liz's talk was useful- it will be good to hear about the new research on appendage blocking if we can get the speaker-

If you want me to ask about what happened to you at the Cardiology conference i am going to next week ( they are talking about NOACS) will you send me a private message with the details of the changeover and I will see if anyone knows what might have caused the clot,,,They are also talking about ablation so should have some answers

Barb1 profile image
Barb1 in reply torosyG

Thanks rosyG will do.

EngMac profile image
EngMac

For interest you may wish to research the lariat, watchman and plug each of which is a method used to close the appendage where these clots are prone to form.

Some people say cayenne pepper will dissolve these clots but you may not be able to take it if you are taking warfarin.

Barb1 profile image
Barb1 in reply toEngMac

I know about the Watchman and will be asking. I will look at the others, thank you EngMac.

Kimmieblue profile image
Kimmieblue

I'm so sorry Barb, I know how much you wanted to get this 4th ablation done and to kick the AF into touch, try to be positive (easy for me to say!) and say to yourself that it was best to find it before the procedure. Climb this next mountain and see what's on the other side, could be that it'll all come together and the next ablation will be celebrations and jubilations. Keeping everything crossed for you. All the best. X

Barb1 profile image
Barb1 in reply toKimmieblue

Thank you

So sorry to hear you've had your ablation put off but my goodness, it's good they found the clot... I hope that it doesn't mess up your Far East trip! What a pain!

Tobw profile image
Tobw in reply to

I think you are right - easy for me to say of course, but it has to be a good thing that they are aware of the clot.

I hope the Warfarin treatment does the trick for you Barb1.

Barb1 profile image
Barb1 in reply toTobw

Yes, me too, but something that I found out last night is that Warfarin does not dissolve clots, the body naturally gradually absorbs them (or not!) So why do I have to be in a higher than normal (for me) therapeutic range?

Barb1 profile image
Barb1 in reply to

Still trying to do damage limitation on that trip....or go without insurance!

MarkS profile image
MarkS

Hi Barb, I would really push to get the strips. It doesn't matter what the GP thinks, you should be able to get the. Point out that people who self test have lower rates of stroke, and that a range of 3-3.5 is only achievable with close monitoring - i.e. once a week testing. If he doesn't agree say you will be putting a complaint in.

The problem with dabigatran is that it is usually stopped before an ablation, and that is when clots can occur. Warfarin continues through an ablation.

Mark

Barb1 profile image
Barb1 in reply toMarkS

Thanks Mark. I will try, especially as I was self testing for years with the help of an ultra accommodating haematologist (who has now retired.)

Kjporten profile image
Kjporten

I wish there was more that I could offered than another response of how disappointing this must be and to suggest you focus on the fact that it was better for it to be found. We all will be watching how this cont to unfold for you and sending our cont hopes for quick resolution so you can get the next ablation and move on.

Barb1 profile image
Barb1

Thank you. Yes it's the waiting to 'move on' that is so frustrating!

jeanjeannie50 profile image
jeanjeannie50 in reply toBarb1

What a let down and shock for you! Hope you are soon in the clear again. Please keep us informed on how you get on. Best wishes.

Jean

Barb1 profile image
Barb1 in reply tojeanjeannie50

Thank you Jean. Hope I can do. Feel like I am playing Russian Roulette at the moment.

jan-ran profile image
jan-ran

This is a bit relevant to my situation right now. I stopped taking warfarin yesterday, and I'm starting rivaroxiban on Saturday (3 days, my gp said) Not a week, but I understand some gp s ask for a longer gap than 3 days. I shall now wait with bated breath until Saturday, hoping nothing sinister is happening in my heart! I am not likely to ever find out....gulp.

Sorry you're having such a rotten time Barb. So good that they found the clot in time tho'.

Best wishes, JanR

Barb1 profile image
Barb1

Trouble is, nothing is done. You just wait 4-6 mths and have another TOE to see if it has been absorbed by the body. Or put it another way, 4-6 mths of wondering if you are going to have a stroke!

Rellim296 profile image
Rellim296 in reply toBarb1

We are all with you though, because we could all be in the same situation, along with lots of people who don't know they are at risk. But it brings it home all the more, I imagine, when you find you actually have had a clot form. Let's hope it's half gone already. To my mind, the threat of doom is a good reason to make the most of every day, to do nice things and enjoy life as much as possible. I'm seizing opportunities at the moment.

Barb1 profile image
Barb1

I'm trying very hard to do just that! Travel insurance calls today!

Rellim296 profile image
Rellim296 in reply toBarb1

Excellent. I thought some people would respond on that front. I'm away next week with Insurance 4 Medical - they offered an OK premium and I didn't do any other research.

Good luck - hope you can still have your trip.

Barb1 profile image
Barb1

Rellim, thanks will try them.

Billybobjo1234 profile image
Billybobjo1234

My hubby had a TOE on Tuesday before his 2nd ablation attempt. Was told to not take his apixaban that morning only. Now on pradaxa for 8 weeks then another TOE. taken off amiadarone as that has done nothing. Put on digoxin but still in AF. has Atrial Flutter, afib and Tachycardia. Never had a TOE prior to his first attempted ablation which didn't work either. So 3 month wait for nothing now another 2 months. So sick of it all.

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