Post PE recovery

HI, I have been diagnosed as having multiple bilateral small PEs and have been started on Apixaban. I have Factor V Leiden and never previously had any issue with clots. Im 52 year old female. Not overweight, and fit. Im trying to find what the recurrence rate for embolism as I have a holiday in 3 weeks that involves long coastal walks. I feel i will be fit enough to do it but feel slightly anxious as phone signal will be poor should anything happen? Do i just get on with everything as normal? I was told my follow up is seeing a chest specialist in three months

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  • HI,

    I also have factor 5 leiden. I've had three blood clots the last one was very intensive it clotted my full thigh. I'm on rivoxaban now for life.

    After travelling for an hour my leg starts to throb. We are flying to krakow in two weeks time I'm a bit apprehensive about flying. Luckily it's not a long flight.

    I will just wear my flight socks and move about more.

  • HI tracy13 -

    thanks for the reply,

    were you on anti coat drugs when after clot 1? (so did the other clots occur whilst on rivoxaban?)

  • HI I had a clot at 18 years old from the pill then another clot at 26 from pregnancy. When I had my 2nd child I had to take anticoagulants throughout my pregnancy I was tested for factor 5 leiden and I tested positive for it.

    I was told the estrogen caused the clots so as long as I'm not on the pill then I wouldn't get another clot.

    I wasn't told I needed to take a tinzaparin injection on any flights over 3 hrs I've been flying all over for 18 years including flying to florida .

    So last year flying to Turkey after 5 days I felt the dull ache in my right thigh sure enough it was a massive blood clot. I'm lucky to be alive.

    So I've been put on rivoxaban for life to prevent another clot.

    Tracey

  • Thanks Tracy for sharing your story and knowledge. Its helpful to me. well done on the early recognition of the clots. I guess I've been lucky to get to 51 yrs without one until now!

  • I'm just so lucky to be alive my first 2 blood clots were misdiagnosed I took my self to A&E.

    All three blood clots have been in my right thigh.

    Tracey

  • HI,

    No I wasn't put on permanent blood thinners until after my third blood clot.

    It's in the nice guidelines 2 clots or more it's recommended anticoagulants for risk versus benefit.

    Tracey

  • I suffered an unprovoked PE Aand am on warfarin for life. I also am most apprehensive about flying long distance but plan on visiting my daughter in Scotland ( a 32 hour flight, but my Pulmonologist & Haematologist say I have to break the journey) I already wear daily, custom made high grade compression hosiery.

    You should be fine, Harvgal as you have the protection of your anti coagulant and the walking should be good for you...it's the sitting for long spells ( eg, I wil have to walk often on my long plane trip) that spells trouble. All the best, Susan.

  • Thanks for the reply and reassurance.

  • Dear Havgal. This must be a very stressful time for you. It is good that you know that you do have a properly diagnosed blood clotting problem. I have a defective prothrombin gene and have been on Warfarin for nearly 30 years after 3 pe's. Like you I was fit and active at the time (still am!). Step 1 is coming to grips with the problem. Step 2 keep well anticoagulated (has a haemotologist consultant determined your ideal INR level?). Step 3 keep well hydrated. Step 4 when sitting/flying for long periods wear support hosiery and walk about periodically. Step 5 go and enjoy life whilst keeping a sensible eye on any symptoms you are concerned about. You are going through the reasonable fear that most of us experienced when first beset with pe's. Faulty Blood clotting genes can be inherited. I inherited mine from a parent and regrettably have passed the duff gene onto at least one of my children. If you have offspring and they won't be tested for the gene then I would advise them to let any medics know your diagnosis should medical treatment be needed. When I was in hospital having a hip replacement one of the nurses was pregnant and had F5L as had her mother. Enjoy your coastal walks. Exercise is good. Let us know how you got on. Anne

  • Thanks for the reply annel.

    I am just trying to get a realistic feel for if it will happen again. There does seem to be incidence of reoccurrence whilst taking anti coat drugs. Apixaban has no monitoring (like warfarin) so makes me a little uneasy. Time I guess will build confidence and reassure.

  • Brief reply to yr last comment harvgal (I have my annual ct scan today as my blood clot was on brain).....could you not ask about warfarin rather than the apixban ?? I definitely don't want to be unmonitored for months and at least warfarin is theoretically reversible whereas newer anticoagulants are not.

    I've travelled lots since my cvst in October 2014.....south Africa, trans Mongolian railway, China and various European trips. Planning India for 6weeks soon. Keep enjoying the things you love!

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