Unprovoked Bilateral Pulmonary Emboli

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I was diagnosed with unprovoked bilateral PE in July 2017 I am on Rixaroxaban.  I am concerned that the only appointment I have had from the hospital is to see the anti coagulant team.  I was expecting some investigation into the reason I suddenly have colts but nothing seems to be forth coming.  Has anyone any advice please? My GP hasn't really given any indication on how long recovery may take.  I am still getting very tired, and occasionally get pain in my chest when I take deep breaths.  

Many thanks in advance

Tony

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  • Posted

    Hi Tony.I was diagnosed with muliple bilateral PE,s exactly a year ago. As they were unprovoked I will be on Apixaban for life to stop more clots forming. I have had no follow up appointments. But I have been asked to go for a blood test this week. As I say it has taken me a year to get to this stage. I am about 80% into full recovery. This forum has been so helpful. Hearing other peoples issues. You are not alone. Good luck. 😊

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  • Posted

    Hi Tony,

                  I'm sorry to hear that you've have had a PE,

    Could you tell me a bit more in detail in what happened to you please as it help with the advice we can give you as a group,

    I had a massive saddle PE in April 2017 and was in hospital for 10 days, it was unprovoked and I will be on Rivaroxaban for the rest of my life.

    Usually when there is no cause for a PE you are on Rivaroxaban or another blood thinner for life,

    If there was a cause like a DVT usually it's 4-6 months cause of blood thinners.

    My guess is that they want to make sure you are on the right blood thinner as Rivaroxaban doesn't suit everyone,

    Your GP should be able to tell you what was shown on your CT scan.

    It is odd that you haven't been given a follow up appointment with your consultant to see how you are getting on and maybe to do another CT scan to see if your blood clots have desolved or not.

    Also have you spoken to your GP about pain relief as it could get worst.

    I found when I first was brought in to hospital I had no pain what's so ever but within a month my pain was horrendous.

    Recovery again is different for everyone, some are a few months, while others can take up to two years.

    Please if you could give me some more details as how you found out yourself? The systems you had etc.. as it might help me or other members to understand how we can help you and try to put your mind at ease.

    we are not doctors just a group of people that have all have had, have and also recovered from a type of PE and we are here to support, comfort and help you understand what your body is going through.

    just having the PE is a life changer, you are going to feel exhausted, drained etc.. your body has gone through a huge trauma, rest as much as possible, 

    I really hope you feel better soon.

    I'm sorry I couldn't help more.

    Warmest wishes

    Liz 🌺

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  • Posted

    They couldnt figure out where my bilateral pes in November came from either. I do t have factor v or a protien c deficiency or lupus. Whitch are bloodclotting disorders. I was on eliquis for 6 months. Came off in may and so far have been fine. Treatment on thinners is usually 6 months to a year.
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  • Posted

    I am not surprised.  I also had hundreds bilaterally I was put on warfarin for life according to my hematologist.  Was told it would take 6-9 months for the clots to be reabsorbed.  Sometimes you need to do your own research ask to see a hematologist maybe even a respiratory specialist.  With PEs you can get scar tissue in the lungs and continue to have issues with lungs after.  Have they done immunology studies?  Like factor 5 Leiden?  Did you have a DVT?  Are you in Canada?  I was 63 when I had mine.  
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  • Posted

    Thanks Guys, I was admitted with suspected cardiac issues and had an angiogram which was clear and given a CT which showed Bilateral PE.  I was in 12 days and put on Rixaroxaban, I have a follow up on 30/10/17 with the anti-coagulant team.  I still get pain and discomfort, shortness of breath I am trying (unsuccessfully at the moment) to get back to work on part time hours.  Is it normal to get extremely tired following PE?  Thank you for the help  Tony
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  • Posted

    I had unprovoked bilateral pulmonary emboli and spent a week on CCU in hospital because my clots needed to be thrombolysed as I was unstable and my heart was struggling. I therefore had all my investigations done whilst I was in hospital and some once I came home as I am now under a cardio thoracic consultant with regular follow ups and haematology. I still have no answers as to what triggered mine as all results coming back are inconclusive. Were u admitted to hospital 
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