PE diagnosed please advise

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I have been experiencing pain in my left lung for 10 months and was diagnosed with PE yesterday following a ventreralisation perfusion scan. I am very upset that the diagnosis has taken so long as initially was given one of  Costachondulitus. Has anyone experienced this ? I had my first PE in 1994 . 

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  • Posted

    Hi, sorry to hear it has taken so long to be diagnosed. Happened to me too, took a year and 5 different diagnoses from a virus to COPD. It is scary when some doctors do not take the time to listen to patients. Hope you get the right treatment and take care.
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    • Posted

      I was put on warfarin both times, each for 6 months.  If I ever get a new clot, it will be on warfarin for life, scary thought!  Thankfully I saw a very good GP, instead of the others who think you are time wasting, Whilst on warfarin the second time I started coughing up blood and this attendance at the surgery is in my records as being "over anxious".  Not much faith in that GP ever again.  Not had any further ones to date, but still get calf pains and chest pains (due to multiple clots in both lungs).  
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  • Posted

    So sorry to hear of your recent experiences and I can totally understand you feeling very upset.  I guess the one positive is that you now have a diagnosis and suitable treatment has, hopefully, begun?

    With very best wishes

    Alex x

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    • Posted

      Yes started on rivaroxaban but was in shock when told and now wished I had asked more questions; 

      1 why not put on heparin 

      2 why not admitted into hospital

      3 why rivaroxaban and not warfarin ? 

      Im thinking the meds take time to work and I'm still at risk 

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    • Posted

      Yes, I would be asking those questions too!  After my large saddle embolism last Jan I was in hospital for a week, given heparin injections immediately followed by a loading dose of warfarin.  I am now on warfarin for life tho I would prefer to change to rivaroxaban as my hair is starting to thin and fall out!  Do you have a follow up appointment arranged with your specialist/consultant?  I was told I would be seen at 3 and 6 months.  Could you have a chat with your GP and see if he/she can answer your questions.  From what I have heard from other people who have suffered P/E's there doesn't seem to be a cohesive approach to treatment at all and it seems to be a real battle to get information from the medical professionals.  I do hope you have a more positive experience soon....

      Best wishes

      Alex x

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  • Posted

    Hi :-) I know P.E,.s are notoriously difficult to diagnose from symptoms alone unless you're admitted in an obvious collapsed state! I'm sorry yours took so long! My experience has taught me that these new pills are very quick acting and absorbed into your system within  hours unlike warfarin that takes at least 48 hours hence the need for heparin alongside them. They have been proven to be as effective in the treatment of PE'S as warfarin without the need for constant monitering... something I am very grateful for! I hated warfarin! The other down side with it was that there may be days when you're not actually in therapeutic range because your dose is wrong or because of what you may have eaten or drunk! This is not a problem with the new anticoagulants. The positive is you DO now have a diagnosis so your treatment is protecting your life. Good luck! :-)
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