Life After PE

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Is there any1 that can tell me what pains I should be feeling. If feeling pain is normal??!

My INR has only been in its Target Range twice in 12months of Warfarin taking and roughly 4month ago I started with Sharp Pains in my chest and also in my sides when Breathing In and Out. Short Breaths ease the pain but Deep Breaths HURT LIKE HELL!!!

Also been getting out of breath after exercise, getting bad heads, my heartbeat RACES, my moods are HORRIBLE and I feel like I am going to DIE day after day!!!

Is this 'NORMAL'??!

All replies greatly appreciated

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8 Replies

  • Posted

    Hi, reading about your experience bought back some horrible memories and I really feel for you right now. I Felt like I was dying for a couple of years. I got short of breath on excursion, I had lung pain, cold lungs, dull aching and headaches too but if you're still experiencing sharp pain on breathing I'd go back and see you GP for a referral for further images to rule out any further injury. Let us know how you get on and I hope you feel better soon. 
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    • Posted

      Thanks for your reply.

      I have a CT in a few days.

      Hope there is a Dr that can read the reults properly.

      I dont get Sharp Pains all of the time but when I do it is SCARY!!!

      Also it would help if Dr's and Nurse's gave straight answers.

      Are you Fully Recovered now? And how long did it take?

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  • Posted

    Hi again, I share your concerns. I am glad you're having another CT scan but you're right to be worried about the radiologist reading the images. Sadly I got differing readings on my VQ scans. As for straight answers in my experience the doctors  are too busy for discussions and the nurses simply don't know! Due to staff shortages staff education is cut. I never really recovered from mine fully. I was given an incorrect dose and shortly after endured a second episode which left me on life long Warfarin which complicated my other conditions. I am 56 and no longer able to work. I am left feeling angry at the mismanagement I received and untrusting of anyone medical. Life is a huge challenge now . I sincerely hope that they get your diagnosis right and you receive your treatment in a timely manner. Good luck, let us know how you get on. 
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    • Posted

      I am exactly the same regarding people in authority that can nake decisions and WRECK YOUR LOIFE!!!

      Had the GP today......

      CT shows no past or present clots but she never said it said anything about Vascular Scarring.

      Also said I can stop the Warfarin aka POISON!!!

      Said the Lining of my Lungs can be Inflamed and this could explain the Pains and Shortness of Breath etc.

      I dont know if its a Good or Bad Scenario?!

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  • Posted

    That's great news about the clots. I am somewhat jealous you are stopping the Warfarin but good for you! In my experience lung inflammation is nasty and very usual; the inflammation can be managed but clots can kill so take this positive news and go forward with the rest of your precious life and enjoy it. X
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    • Posted

      Does the Inflamation stay forever or does it clear up?

      It still freaks me out when feeling sharp and nippy pains because they feel similar to the pains before the PE diagnosis.

      Even though Warfarin poisons you, it sort of keeps ya mind at rest. A bit like a Safety Blanket!

      Will my Lungs always be Fu##ed Up now?

      x x

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    • Posted

      I wish I could tell you different and I'm sure the medical professionals will disagree with me but I am over four years post PE and I still have those pains and indeed shortness of breath but I do have underlying pulmonary heart problems so maybe it's different for me. I really hope you make a full recovery. You have everything on your side now. X
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    • Posted

      They say your luck has to change sometimes. The way my luck rolls I find it Very Unlikely!!!

      All I can do is take 1 day at a time and live in hope. Last 12mnth have felt like a constant nightmare. Thanks for replying x

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