Lost, exhausted and stressed

I'm a wife of a 33 year old man who suffered PE in both his lung in mid October 2016. After 2 nights in the hospital he was sent home with a RX for Xarelto. Few weeks later he saw the hemotologist for a ton of test that all came back negative except the one for Lupus Anticoagulant. Dr also told him he could drop dead at any moment... real nice doctor. After a few months on Xarelto he was facing anxiety and depression along with increased heart rate. He switched to Pradaxa in hopes to help w/ the metal side effect. He's still experiencing the bouts of increased heart rate and the doctors seem to just brush it off. He's healthy and was fit prior to the clotting with a resting heart rate of around 60. We were vegan and have gone back to eating meat but cut out MSG and Gluten since those things to spike it. He hasn't gone back for the 2nd test.

I'm so exhausted and stressed for him after 7 months of this.

Thanks!!

4 Replies

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  • FIrst-take a deep breath!! Clots take a long time to resolve and there may be a bit of residual lung damage but don't despair. He needs to take the second blood test to confirm he has Hughes (lupus anticoagulant is the old name) and if positive he will need anti coags for life. I was finally diagnosed after PE's 6 years ago and could barely walk to the front gate. Things do improve and Pradaxa is one of the new NOAC's that has a reversal agent if that's worrying you. Having a diagnosis without further damage is a plus. Really important that you have a specialist for this and if you let us know where you are the Admins on here are a fount of knowledge to get you on the right track.

    The only thing with Pradaxa is that you must take it at the same time each day. Were you offered Warfarin at any time?

  • Hi welcome, firstly your husband is on treatment for the clot so that is good. All this is very scary and sounds like you need a few things explaining - fear of the unknown is causing further stress to you both.

    Your husband needs the second test, as once diagnosed we can help steer him to a specialist. Can you organise this?

    Also where are you? Stay with us, many on here have same experiences and can share information that will help.

  • HI, things will improve, he is being treated, but it must be a big shock for both you and him. Diet wise, mine is Mediterranean, lots of oily fish, but gluten free, many of us have a problem with gluten. There are other tests for Hughes Syndrome/APS, but I am pleased to hear that one test has picked things up so far, as it is far worse not to have a diagnosis, if you know what I mean!

    nticardiolipin Antibodies (aCL)

    Test

    Sometimes referred to as Antiphospholipid

    Positive in 80% of cases

    Higher Levels = Higher risk of Thrombosis

    Lupus Anticoagulant (LA) **

    Test

    Positive in 30-40% of cases

    Cannot be used if patient is on warfarin

    Beta2GP1

    Test

    This is a newer test, not routinely performed, but occasionally positivite when the above two tests are negative

    Please stay on this forum for support, common sense and knowledge about the condition in general, and also make sure they look at your husband's vitamin D, B12 Iron and Thyroid levels, as if these are off it will make him feel worse.

    MaryF

  • Hi,

    I must say that he is lucky who has a wife who can help him and who has found this site where we all have HS/APS!

    As MaryF says it is far worse not to have a diagnose and go years and not knowing what is wrong with me. A diagnose and a Specialist of HS/APS is the two things that are important for us.

    Hope you will stay with us here and give him my regards!

    Best wishes from Kerstin in Stockholm

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