Recently diagnosed

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Hi, last week I was disgnosed with bilateral pulmonary embolism. Im a 38 year old man and it has really knocked me for six. I have never had one before but in January my leg swelled and I had tests for DVT but they came back negative. About 6 weeks ago I felt a numbness in the left side of my chest when sitting down and stupidly thought it was muscular so left it. Then last week I suddenly became very short of breath just walking a few feet or even talking to people, I was pestered by my partner to go to the GP and luckily I did as they found the PE. Ive never had any health problems as such before but I am over weight. They started me on Riveroxiban and I was on that until yesterday but after visiting the anti coagulation clinic they have put me on Warfarin, they say that Riveroxiban isnt proven to work on people my size and that I need to be at least 10kg lighter to be on it safely. I have had some good days and bad days since thw diagnosis mainly feeling tired but today I feel horrendous, extremely fatigued and totally exhausted, I also have an annoying headache on the right of my head. I know everyone has different symptoms but wondered if the extreme tiredness is normal. All day I have been drifting in and out of sleep but not being able to actually get any decent sleep, could this be due to the fact that yesterday I had 15mg Riveroxiban in the morning, Dalteparin in the evening and 10mg warfarin in the evening as well as dalteparin again this morning? Im dreading taking my next dose of dalteparin and warfarin this evening. Sorry to waffle but can anyone tell me if this tiredness is normal and how long it lasts for, Im due to go back to work on Monday and I dread to think how Im going to get through the day if I feel like this. Thanks

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  • Posted

    Hi there I am at work , I haven't read a lot of your post but message me if you can and I'll have a chat with you as I am a big chap with bilateral pe last February and I am on rivaroxeban .

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  • Posted

    Christophe,

    You will feel tird after PEs. The degree to which you feel tired woukd relate to the size and number if clots. Since the PEs are so recent, it is going to be a while before the tiredness reduces. No knowing the extent of your PEs makes it hard to judge, but going back to work on Monday sounds too soon. I am surprised no-one has prescribed rest and recovery.

    I too was on Riveroxaban and switched to warfarin. The Riveroxaban has a very short half life, so would be out of you system by now. I found the Riveroxaban caused headaches and joint pain. It takes a while for the warfarin to regulate and will need frequent testing early on (should be every few days at the start). I have been on it for well over a year now and find it preferable to Riveroxaban.

    I have no experience of Dalteparin, but assume it is a type of heparin (?). If so, they will stop that when the warfarin has become effective.

    Good luck and take it easy for a few days or so.

    Peter

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  • Posted

    Hi Christophe

    I am really sorry to hear your dagnosis, but you are among friends who understand and will help in any way we can.

    I was diagnosed in November 2016 with bilateral large PE's in both lungs and it totally knocked me for six, they do not know what caused them but have put it down to maybe HRT tablets that I had been taking for 4 and a half months beforehand.

    The recovery period varies between different people, I still get a little breathless and chest pains (I have heart strain on the right side due to the clots), the anxiety has been terrible and I take each day as it comes.  My doctor has said it could take up to and maybe beyond a year to fully recover.  I try to go for a little walk a few times a day and potter around the home.  I am aiming to do a little more each day depending how I feel, I too get good and bad days.

    Listen to what your consultant tells you, and listen to your body.  Don't try and do too much too soon, your body has been through a trauma and needs times to recover.

    Take care

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  • Posted

    Hi Christophe. I am surprised you are allowed back to work. Mine was diagnosed back in August and I was told by the doctor it would be 6-12 months recovery. I am on Apixaban but get very tired and still breathless walking far. Occasionally have headaches also. Hope this helps. Lizzie
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  • Posted

    Thanks everyone, Im being told that they are medium sized clots. Today has been the worst day since diagnosis. I was told by the nurse when being discharged I could go straight back to work, I went back after 4 days and only lasted a few hours so I took the rest of the week off. Luckily my employer is good and has no problem with me doing bits of work at home, problem is though with my work I cant be off too long and it is a busy period at the moment. Thanks for your support, Im sure I will be using this site on a regular basis. I have my first INR check tomorrow.
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  • Posted

    hi christophe, yes the tiredness is normal, well it was with me and i really dont think you should be going back to work so soon, i assume they checked your (INR) or clotting ratio before they gave you the Dalteparin and the Warfarin? hope this helps

    christine

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