Blood clot in heart - anyone else ?

[Mayleen]

Hi amazing AF people

I posted here in January and got some great support. I was very symptomatic, exhausted low and also had just found out I had a blood clot in my heart.

I went on warfarin and in May had a TOE which revealed the clot had gone then a cardioversion which only lasted 3 days.

I ended up having 6 months off work due to the clot the warfarin and the schedule of the hospital.

I am slowly going back to work now and want to put this behind me.

But I am stuck wondering about the blood clot. I don't know anyone else who had one and can't find much info on line.

Medical professionals seemed to become quite mute when I mentioned it and told me to focus on the fact I was on warfarin so treating it.

Anyone else had one too ? How did you deal with it and how do you feel about it ?

Its the emotional / psychological part I am struggling with.

It's like something massive happened but didn't happen.

Thanks in advance to anyone who is kind enough to share.

Mary

[BobD Volunteer]

Mary this is a risk when you have AF as blood does not flow cleanly. and can pool forming clots. It is these clots which can be expelled from the heart that cause the devastating strokes associated with AF which is why you are now antiocagulated. Many people are not so lucky!

AF and anxiety are common bedfellows and feed off each other so please try to find a strategy to reduce your worry. Think how lucky your are not be be trying to recover from a very bad stroke, rather than worry what might happen. The AF will be journey enough for you right now. Go to AF Association and read all you can as knowledge is power and helps fight anxiety.

[Mayleen in reply to BobD]

Thank you Bob.

I have read so much here on this site and know you in particular are a tremendous support to many. I am well educated but found little information about what I am interested in discussing. I was looking for some shared experiences. It was precisely that people told me not to think about it which caused me the issue as I did want to think about it so I could rationalise it and deal with it. I think I felt more stigma round the clot than the AF.

Thanks again for being there, doing what you do.

Best wishes and good health

Mary

[Hidden]

I had difficulty letting go of negative thoughts about something potentially catastrophic that might have happened, but didn't. I found a short focused course of cognitive behavioural therapy very helpful.

If your ruminations and negative thoughts are associated with low mood, and holding back your physical recovery, CBT may help.

[Mayleen in reply to Hidden]

Thank you Oyster. Its more that I can't chat to anyone who had the same. It seems to be a very scary topic and I am trying to normalise it by finding others in the same boat. I have been worried that I over reacted and really concerned now that my paid sick leave is gone. If I need more treatment (and I hope to get an ablation) I will have put my self in a difficult place. I'm not getting much support at home as my partner does contract work with long gaps in between and isn't all that hungry to get a job right now though I am feeling it's an urgent issue. We seem to be at odds and I can't talk about it. He wants it (the AF blood clot etc) to be over and I know its not.

[cali111 in reply to Mayleen]

Sadly most partners don't understand men are notorious for being selfish and not want to know. You really need his support as this is serious not a cough or cold and will not resolve and go away as would like.

Take care!!

[Kaz747]

Hi Mary

I’ve had one. Last year when I was in the cath lab about to have an ablation, under general anaesthetic, the TOE showed a blood clot in my left atrial appendage so they had to abort the procedure and wake me up. I had been on anticoagulants but was asked to stop them 2 days earlier and my EP said he believed my aggressive arrhythmias caused the clot to form during that time (and that is why they always check, even though they may only find 1 in 100). I was put back on anticoagulants and had to take things easy for a few weeks whilst my body dissolved the clot. It is scary and makes the risk seem a lot more real. That said, it is important to focus on the positive and look towards the future. A couple of months later, another TOE showed I was fine and I had the ablation.

[Mayleen in reply to Kaz747]

Thank you Kaz.

It helps to hear what happened to you. I was so fortunate that I had missed 1 day of the doac drugs the week I was due for cardioversion. It was only that I broke down in tears sobbing devastated not to be booked in for the cardioversion that the nurse agreed to get a consutant to do the TOE. But as I said above to Oyster its not that I dont understand it but that I just have not found others who can share their experience rather than the look of shock from friends and family when they hear. So glad that things are good for you. Wishing you the best

Mary

[Kaz747 in reply to Mayleen]

Thanks Mary. I’ve now had 4 TOEs in 14 months- one before a cardioversion, one before the abandoned ablation and two before ablations. Thankfully I was asleep for them all. I have read stories about people having them whilst awake which I wouldn’t like.

[cali111 in reply to Kaz747]

It was three years ago they found a clot in my heart when on the table for an ablation. It has only recently resolved . I have had a pace & ablate last December but still am very symptomatic and am due an RF ablation next week. I am just thankful that I am still alive each morning.

Don`t worry!

[Mayleen in reply to cali111]

Thanks Calli.

Wow you have had a rough ride ! Im sorry to hear how long its been going on. That is a long time. I don't know but you sound like now you might have learned to live with it ? Did you get any advice for living with it, say what to do and what not to do ? I was told nothing too strenous in case it dislodged. I really do wish you well with your day to day symptoms and keep everything crossed for your upcoming procedure. I will think of you next week. Mary

[Mayleen in reply to Kaz747]

My goodness !! I saw the scope the first time and wish I had not !! Absoloutely sleep is the best. My first one seemed to be more sore afterwards. Thank you again for telling me your experience. It helps a great deal to discuss. Best wishes Mary

[Barb1]

My experience was just like Kaz although I was put back on warfarin for 6 months until it dissolved. I had been on Dabigatran. After the aborted ablation actually went ahead I continued with warfarin until Edoxaban was approved as my EP said that was best for preventing clots.

[Mayleen in reply to Barb1]

Thank you Barb ! Good to know you came through it all. Yes my experience was about 5 months in the end. I was amazed at the length of time as I thought there were clot busting drugs that could be used. But perhaps not in our situations. I know we have been fortunate that the clots did not cause more serious issues and many have them without knowing. Thanks for sharing your experience. Its reassuring to be in such good company. Wishing you the best. Mary