Factor V Leiden, DVT and PE's

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Hi all, I'm new to the group. I'm a 49 yr old, previously fit male who had recently been tested for Factor V Leiden as both my sons have this and developed DVT's (in their 20's). By coincidence, before I got my positive results last year I felt pain in my right calf after a long haul flight. I was scanned for a DVT but this was negative. I returned to the hospital two weeks later when my calf swelled slightly and my d Dimer test was positive but still no DVT was found. I am still waiting for my vascular appointment. My health declined over a two month period and I visited my doctor weekly and kept being given medicine for gastric reflux.

I was rushed to hospital last week as a was in pain and couldn't breathe where a CT scan showed a clot in my left lung and several smaller ones in my right. I also had a chest infection. 

I have started taking Rivaroxaban and I'm resting - my sons have tried warfarin and Rivaroxaban and the latter seemed to have less side effects.

I thought I knew enough not to get caught out but I've learnt I should have been more persistent and kept presenting at A+E as I should have taken more responsibility for my own health.

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6 Replies

  • Posted

    Hi Steve,

    I wouldn't beat yourself up too much......it seems quite tough to diagnose. It took a while with me and I had many clots in both lungs.  No DVT either. They put me straight on anticoagulants, so now can't test for Factor V Leiden as they can't risk taking me off them. Ho hum...

    Good they have caught it and you should see some decent improvements now you are on anti coags.

    Good luck and stay in touch.

    All the best

    Peter

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    • Posted

      Thanks Peter, I'm a week into treatment now and in very little pain as the chest infection has been dealt with. I haven't done much since coming out of hospital but plan to start short walks from today. 

      I ran and cycled regularly before I was admitted but my running times had been getting worse over the two months and I was feeling ill during and after exercise.

      any idea what caused yours if you had no a DVT beforehand? 

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    • Posted

      Hi Steve,

      Sounds like you are recovering well - excellent news. It seems like they caught you before it got too extensive. 

      They never did find out my cause, which is a bit of a concern as the clots are large and numerous. The haematologist thought Factor V Leiden was possible, but didn't want to risk taking me off warfarin to do the test. Next appointment is week after next, so maybe will find out more then.

      They told me exercise was good for recovery..

      All the best

      Peter

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  • Posted

    Hi Steve

    Iv been on rivaroxaban since sept increased heart burn but that's about it as far as side effects are concerned. I had multiple clots in both lungs and they will test me but yeah can't be tested whilst on meds so leaving me on until iv taken drugs for 6 months. Thank goodness your ok though your very lucky

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    • Posted

      Thanks Tina, i'll let you know how the Rivaroxaban goes, I had a positive V Leiden result as did both my sons. My wife was negative and my daughter is still waiting for her results. I have the the type which is only present in one parent but there is likely to be another genetic issue adding to this which is giving the children DVT's.

      im feeling really positive health wise as at least I know what it is now. Looking back I haven't managed to do much for the last two months.

      are you only staying on Rivaroxaban for six months? 

      Im trying to decide how long. The consultant recommended I take them for life

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    • Posted

      Hi Steve

      Good to be positive I was off work 3 months I fell down the stairs and couldn't weight bear for months although not broken. That could have been the reason I got the clots but I have two cousins who have had several clots so my consultant wants to test me after 6 months to determine whether good idea to stay on it for life. I asked about the side effects of being on the drug long term and was told safer to be on the drug so I have to wait until beg of March to have a blood test. My scan which diagnosed the three blood clots discovered gall stones and something on my liver so that was a worry for a while. I've been told liver ok for now but want to repeat scan 6 months later so got that march too lol getting old eh I'm 52 never had a problem in my life till now

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