Multiple clots in both lungs

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hi everyone, was diagnosed on Monday with lots of small clots in both lungs. Been feeling unwell for about 7 weeks but thought it was just my anxiety. Started coughing blood went to A&E where the clots were confirmed after ct scan. Really worried because I have urinated blood in the past also, they want to do more scans just to check everything. Really worried because the consultant said I was a rare case. Any reassurance really appreciated. X

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  • Posted

    Hi there Paul? , I had multiple pe's in both lungs about 18 months ago now , time really flies ! I had worse and worse breathing over a while and got forced to go to hospital by friends and family and was in quite a bad way . Long story short after lots of heparin injections and what will now be a lifelong dose of rivaroxaban daily I am 'fine' still have the odd scare of left leg and thigh pain which you immediately think is another episode , but overall apart from the odd day of being intensely tired every 3 or 4 weeks all is well !!!!

    My honest advice is don't scare yourself as the conversations can get a bit scary , but once all is diagnosed and your on the right medications there's no reason not to be normal as it were !

    Hope this helps , listen to everything but don't panic , and if you weren't before be good to yourself health wise 👍

    All the best

    James 

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    • Posted

      Hi Jimmy, ,  thanks for responding.

      just been worrying myself sick about the cause of them. I'm glad you're feeling better, I've been reading that it can take quite a while. I'm just glad that the dr at the hospital did a d dimer blood test and found out what was going on after being told 2 days before that I was fine.  How long after did it take for you to felt reasonably ok? 

      All the best

      Paul

       

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  • Posted

    I agree with Jimmy. It is really scary . You don't know what is going on I was diagnosed with multi bilateral PE back in August last year. Just listen to your body . Anxiety is part of it. Just try to get past that and work on getting better. When I look back I think I have come so far. Positivity and small goals. Keep us posted. You are not alone. I would have felt lost without this forum 😊 Good luck.

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    • Posted

      it is really scary Lizzie and I'm glad you're on the mend. I've been reading that it can take quite some time and have a few bad days. I've always been an anxious person ( terrible panic attacks) so this will probably make it even worse.  Are you back to the wat you were pre PEs? 

      All the best 

      Paul

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  • Posted

    Sound advice from Jimmy and Lizzie really can't add much other than try to keep positive and try not to worry too much. Small steps at first and build back to your normal self over time. Look for something positive from it all. Firstly your still with us which is a massive positive. For me, my positive was rediscovering exercise after having a long hard look at myself and the way I'd led my life in the past twenty years. I'm nine months on from where you are now and feel as good as ever now. Keep strong mate.

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    • Posted

      thanks pauleyorks, I def let myself go in the last year ( put on 4 st, eating really bad, no exercise, started vaping etc) funny thing is 6 weeks ago I went on a diet, started exercising and stopped vaping and then got the PEs. Glad you're feeling better, been reading it's a real gradual process. What was the cause of yours? Are you on thinners? 

      All the best 

      Paul

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    • Posted

      Thanks for the reply Paul. After all the years the specialists have put it down to the flight I had out to cyprus last November for a winter break. The problem started out there and I spent 26 days in the hospital. Felt a bit rough before the flight but they are telling me that was more than likely the pluerisy that I also had which was also picked up by the hospital. I've been on rivoraxiban since then, probably for life although I need to educate myself more about the drug and any problems from long term usage. I've flown back to cyprus since then for a holiday so overcame that obstacle full on because the mind can really in still fear easily but I've tried to meet all of this with an up and at it attitude, mainly because of this site really and reading so many messages from people saying how anxiety and stress can really take a hold of you after suffering a dvt and pe's. I felt a lot of sympathy for people going through anxiety because it must magnify the problem massively so I was determined to keep positive about it all. I'm still cautious in things that I get involved in exercise wise and as many on here will tell you your own body will let you know it's had enough especially in the early days. Keep your chin up mate and stay positive as best you can.

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    • Posted

      was at the gp yesterday and she said i was really young to get a PE  i told her she should check out the internet coz loads of young people have them and they arent as uncommon as you think. you seem to have things in perspective and dont let it rule you, hope to get there but already being an anxious person its gonna be a long rd, had a few dull central chest pains yesterday and worried a bit but they went after watching a few funny you tube vids. people with anxiety generally have an extreme awareness of every twitch in the body lol. was great that you went back to the hospital to see the dr that originally treated you and glad youre over the worst of it. 
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