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AF Association
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Newbie looking for some reassurance (AF and bloodclot)

Hi all.

So pleased to have found this forum and all you wise and generous souls. I have been touched reading the posts here and how supportive you are.

Essentially I have a blood clot in my heart which is delaying my cardioversion. It was discovered after a TOC (? Scope in throat) as I missed a dose of Rivaroxaban 3 days before my planned cardioversion.

Diagnosed in June (and given Rivaroxaban) but only betablockers since November. Been in constant AF for months.

I am now on Warfarin (its only been 5 days) and in addition to 10mg of Bisoprolol have been perscribed 125 microg of Digoxin which has now got my heart rate to around 80.

I am so scared about the blood clot. I and about how long it will take to go. About getting heavier due to inactivity and also diet due to Wharfarin.

Due back to work tomorrow but scared it will take over and need to focus on health

Any advice, similar experiences or observations to share. I feel so alone and my partner thinks I am being negative. Im in my 40s with a primary school aged child.

Thank you !

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Hello Mayleen, sorry to hear about you blood clot but what a good job it was detected before the CV. You may already be aware, but the reason for the CV is to see if you can be successfully brought back into sinus rhythm and if it’s successful, it opens up opportunities for further treatment that may have more lasting benefits so try and be patient and follow the advice of your doctor. Hopefully you will not have to wait long for a second attempt.....best wishes.

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Thank you so much for your reply. Yes it was fortunate the clot was found before the CV. I was so upset to know it was there and frustrated it took 2 weeks for medication change. Its put me back about 10 week probably. But fingers crossed !

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Hi Mayleen

I was diagnosed with a blood clot in my heart heart in August when I was about to have an ablation, discovered by the TOE. I had been on Rivaroxiban until 48 hours before the procedure. My EP said it would take about 4 weeks for the body to dissolve the clot and that I should take things easy for that time - gentle walking was okay but no gym work or anything too strenuous. Six weeks later I had the ablation, another TOE showed it was all clear. It is scary so your feelings are very normal.

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Thats so encouraging thank you !! Im getting much more "conservative" estimates from GP nurses about the clot. I don't think they could grasp my concern or frustration.

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I think in your situation, it is essential to get your INR within the therapeutic range as soon as possible. It is not unusual for this to take weeks, even very occasionally a few months. However it can be, and in hospital usually is, achieved in days.

Suggest you ask your GP as a matter of urgency to supervise dose adjustments of warfarin personally, rather than relying on the software algorithms typically used by the INR clinic staff. This may require you to attend for testing twice weekly.

Why did the cardiologist switch you to warfarin, was it felt that the clot had formed despite taking Rivaroxaban. It’s somewhat worrying for those of us taking the new anticoagulants (DOACs) that simply missing one dose could have been responsible. What dose were you taking?

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Thanks Oyster. That good advice re the GP and anticoagulants. Yes I just dont know what to think about the clot since I was on the anticoagulants since June. (20 mg) I hardly think it was I missed dose but I think I was undiagnosed for a long time. I'm thinking it must have been there before. I wonder if more people should have the scope on diagnosis.

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Your medics will be keeping a keen eye on you and as long as you follow their instructions you will get a good outcome. Remember they are used to dealing with such things and what is terrifying for us going through it is pretty much routine for them.

With regard to your emotional state. It is crucial that you find suitable mechanisms to keep calm, be it mindfulness, CBT or any other relaxation and calming strategy. It is so easy to let it get out of control but believe me when I say I have been there far more times than I care to remember and it's easier said than done but it is crucial to get the fear and worry under control as best you can. No one knows what it's like until they have these problems so it's easier for people to say you are being negative, well wouldn't most people be in similar situations so please don't beat yourself up. Instead look for coping strategies while the medics care for your heart medically and procedurally. The best help you can give yourself currently is to find calming methods to see you through.

Have your medics given you advice re work in the meantime. If you can't cope at work then ask for a medical note and take some time off. Your main priority is to return to best health for your sake and your families.

Best wishes, plan something nice for when this rotten phase is done and look forward to bright future. X

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Thank you so much and apologies for taking so long to reply (back to school tomorrow and couldn't get my son to bed). I have been off work since mid November. I physically could not get to work as I commute on the tube and all the stairs and changes have been impossible due to breathlessness. My heart rate is only now hovering round the 80 mark so I think I will be more physically able. Its the worry, all the ajustments, the series of bad news and 4 procedures that have not been possible (inc 2 ablations for ectopic beats). I will look into your suggestions and do agree that some kind of self practise would be very beneficial. I suppose now I feel a mix of hopeless angry and numb. On one hand I would like to get back to work but on the other I was putting my self under enormous pressure and had symptoms I really should have got seen much sooner. And I found it intrusive when people kept asking about my health.

I feel like a mess have put a lot of weight on and look like I have aged 10 years. I want to hide till its all over !

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I would have been wary about going to work with the blood clot in my heart with the extra exertion, mental stress and the commute. I’ve been off work since June with all my dramas. The blood clot is fine as long as it doesn’t move. If I were you I’d be be trying to get a few more weeks off work so you can take it easy. You can move around but don’t do anything too vigorous. Usual disclaimer- I’m not a doctor, just sharing my experiences.

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Thank you so much Kaz. Sorry for your troubles. Sounds so hard on you. I so apreciated your empathy as you seem to know exactly what I was concerned with. I am going back to the drs to ask for another note. I'm feeling better making that decision particullarly having had perspectives from those in the same boat. Wishing you well and hope things improve for you soon !

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Let us know how you get on. All the best x

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I really do understand your current situation and it does seem hopeless and beyond distressing when in the midst of it. Hold on to getting well and having a good future, it will happen. Currently you are in the midst of a horror story but it will resolve and you will get back to better health and strength. Best wishes. X

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Thank you so much Meadfoot. So kind of you. I'm bouyed up by all the support here and just letting it out has helped so much.

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Hello Mayleen. Sorry to hear about your woes. Nobody really understands the mental aspect of being diagnosed with AF.

It seems as though almost overnight you go from being upwardly mobile to being unable to function and invariably there is no light at the end of the tunnel.

For the most part you look well so nobody sees this newfound disability so they don't make allowances for you.

Does your local hospital have a Cardiology Therapist that you can see. I am still waiting to see mine after being referred back in November but at least I am on his list. In the mean time I do a lot of deep breathing exercises and find things to do which make me happy - music, friends, reading.

Can you get help with looking after your little one which may alleviate some of the pressure.

I do hope that you get some help soon and wish you well x

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Dear Becks,

You said it !!

One minute your motoring along and the next you feel 50 years older and half dead ! I will investigate the cardiology therapist. I have never heard of it. Hope you get seen soon. And that you start to feel better. I'll take your advice on the feel better things. Wishing you well !

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I had a clot found when I was about to have an ablation. I was on Dabigatran but stopped it 48hrs before intended procedure. My EP also put me on Warfarin until the clot dissolved. He wouldn't do another TOE for some months and you just learn to forget about it really. I've had hip replacements and sepsis as well, so my weight has ballooned. It is soul destroying but other than making sure you don't overeat, for now ,there's not a lot you can do about it. In the better times I do Zumba Gold and Medau. You will get through this but you do need support and if friends and family don't understand, at least we do.

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Thank you Barb. Its such a shock isnt it. I just kept wondering how long it was there as I think I went undiagnosed for a long time and there was a lot of confusion round my diagnosis. I put off the doctors till I was so ill I couldnt get up my own stairs at home.

Its hard with all the Christmas goodies about to be good but im back on the healthy eating wagon now. Hope you can get back to Zumba soon. Never tried it but always looks amazing ! Thank you again for sharing as its really helped to hear how you dealt with it.

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That is what is so wonderful about this forum

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On the question of how long it will take for the clot in your heart to go, I believe that it depends how big it is. I also read that anticoagulants will stop new clot forming but won’t generally dissolve existing clot.

Perhaps email your cardiologist to ask when it would be safe to return to work in your particular circumstances. Like Kaz747 I would be cautious about returning to work without medical advice.

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Can they not give clot busting drugs? Or or these too dangerous and reserved for people having heart attacks? I have read that nattokinase a supplement derived from natto ( some thing horrid the Japanese eat ) will dissolve clots . The body has it's own clot dissolvers - maybe the people who get clots and strokes with afib have less of this. Why can't they look into measuring this so as to see who is at greater risk?

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Apparently alteplase can be used in heart attacks with warfarin if the INR is below 1.7 ; not heard of that combination being used with LA clot. Interesting point though, thanks .

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It's interesting that Mayleen got the clot when on Rivaroxaban and since has been switched to Warfarin. One of the disadvantages of DOACs is that apparently the amount in the blood can vary a lot depending on the individual - indeed just like Warfarin . The INR test enables this to be tracked but the lack of testing for the DOACs far from being the wonderful advantage claimed will actually in the real world lead to strokes or bleeds that with testing could be avoided.

My ex GP ( now retired) in the UK is a personal friend with whom I correspond regularly. Her husband got a DVT in his leg and was put on Apixaban by the NHS doctor. He developed a pulmonary embolism on Apixaban. She arranged for him to see a haematologist privately who transferred him to Warfarin. He said that in his opinion there were too many unknowns with the DOACs yet to be resolved and he preferred his patients on Warfarin.

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Yes I am thinking about switching back to warfarin from apixaban after reading here about stroke occurring while on DOACs. Thank you, important information.

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Thank you again Oyster. Im due back at the docs tomorroe and will ask them to extend the sick note. Its so good to have others validate my concerns. I agree I think the clot predated the anticoagulatants. Thank you again !

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I was diagnosed with a blood clot - went on warfarin - it disappeared before my last ablation . Just keep up with the warfarin. Shouldn’t be a problem . The clot is likely in the appendage in your left atrium - the blood kind of circles in there - keep your INR BETWEEN 2 and 3

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Thank you Magnolia. Thats great news for you. Fingers crossed for me too. So good to hear the positive outcome !!

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Mayleen,

Sorry to hear about the clot, but there is hope. I use Nattokinase as one of my blood thinners / clot preventing regimen, Look for my other posts where I go into more detail about my daily regimen, bu t I weaned off of Warfarin and do not take a prescribed blood thinner and feel tremendously better for it. Some may say there's a risk, but I feel that the combination of natural blood thinning agents I use id effective.

Nattokinase is highly effective against blood clots. See these links.

articles.mercola.com/sites/...

ncbi.nlm.nih.gov/pmc/articl...

selfhacked.com/blog/nattoki...

malecare.org/read-this-firs...

Cheers and good fortune to you.

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Thank you so much for taking the time to reply and for all the links ! I will read with interest ! I was feeling so gloomy but all the posativity here has cheered me up so much !!

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