Second PE aged only 22 - Rivaroxaban?

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Hello all i'm new to this site! I have recently been discharged from hospital after suffering my second PE aged only 22. I will now be on rivaroxaban for life as the risk of a third one happening is too high. Obviously i've read up about the drug and know it's side effects but for me knowing i'm going to be on it forever is really quite daunting. Can anybody who is on life long anticoagulation please give me an honest opinion of what it is like? I also feel great worry over what has happened to me. I've spent the days pondering over the 'what if's'. Even now as i'm typing this the breathlessness i'm experiencing serves as a reminder sad Does this feeling of worry and anxiety ever go away?? Thank you. 

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  • Posted

    Hi Zoe,

    Sorry to hear about your troubles. As a recent PE sufferer, I really can say "I know how you feel".

    First off, don't panic - it really does get better. I suffered breathlessness to varying degrees for some weeks. It was after about 10 or 12 weeks that I really noticed a dramatic improvement. Almost back to normal now after about 16 weeks and breathing is better than it has been for a year or so.

    I am afraid I can't comment on long term rivaroxaban, as I was only on it for about a month. It didn't suit me - although I know others who it suits very well. I am on warfarin and that seems ok and both my father and father in law were on warfarin anti coagulation for decades with no ill effects.

    For the "what ifs", they recede after a bit as things improve. I had a large number of  large clots in both lungs....my view is that I ended up in a good place, so I view "what ifs" as "whatever"s :o). Exercise helps, so I am looking forward to spring!

    Good luck with the recovery and I am sure you will feel a lot better soon.

    All the best.

    Peter

     

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  • Posted

    Hi there

    I'm sorry to hear about your pe's.

    I came out of hospital nearly 2 weeks ago now and still find it hard to comprehend what happened.

    It's a big shock to you and life changing I think.

    I am on Rivaoxaban for the rest of my life too but unlike you I am 44. Still it is very daunting.

    I have found comfort in speaking to people here who know what it's like to go through an embolism and reassurance that things will get better.

    I am taking each day at a time. I do feel a little better. I think it's all down to being patient and taking it easy.

    I know it's hard but try not to think of the ifs and buts as it will drive you nuts.

    Keep logging on to this site and posting.

    I hope you feel a little better soon and wish you well in your recovery

    Carol

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  • Posted

    Hi, Zoe - I had multiple PE in both lungs a little over a year ago. I'm a lot older than you are and it was my third thrombotic episode and I am now on rivaroxaban for life as well. There are no side effects, I don't feel any different - the only problem is that the first time I accidentally cut myself I couldn't understand why I was bleeding so much. Then it clicked. I had completely forgotten I was taking anticoagulant! That said, the bleeding stopped in a few minutes and now I'm just a little more careful than I used to be. So don't be afraid of the treatment. As for the worry, eventually that will go away as well. It's normal to feel depressed and distressed after a major health scare like that but eventually that will go away and you'll feel fine again. It takes a long time to recover completely and everyone is different so my advice is to give yourself lots of self-care and compassion. 
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  • Posted

    Im 21, and have had 2 PE's since age 19 and 20 Im also on rivaroaban for life so I know how ur feeling and yes the anxiety and worry will go away I promise and this is coing from somebody whos been diagnosed with panic disorder and GAD sad Ive noticed rivarox makes me very tired during the days but thats a small price to pay. You will be fine.
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