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2 Months post PE diagnosis

Posted , 8 users are following.

amanda0724
amanda0724

Wow...what a rollercoaster of emotions. Starting in March 2016 I had calf pain for a month. DVT ultrasound came back normal. Then I had my first "asthma attack". Palpitations, fast heart rate and shortness of breath constant. Had an echocardiogram, stress test and holter monitor. All normal. In and out of emergency department (at least 8 times ) my asthma was blamed. Chest xrays clear, D-Dimer bloodwork negative Oxygen sats always 99-100. Given a nebulizer treatment every time (never helped). My dr put me on antidepressants and said the breathing difficulties are all in my head. finally, one dr believed me and gave me a CT scan with contrast and there were my clots. two in my subsegmental arties in the left lung. It's been 2 months and I still feel hopeless in this recovery. Shortness of breath comes and goes, almost as intense as it was pre-diagnosis. I am on prednisone now to try to help with shortness of breath. I just feel so low.

Thanks for listening all!

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  • lisa_53285
    lisa_53285 amanda0724

    Posted

    I just was diagnosed three weeks ago with a PE in my left lung and I'm on Xarelto 15 mg twice a day . I'm having weird pains in my chest and left arm that radiate to my left jaw that takes my breath away. This pain is worse than the pain I had when I went in .

    I'm bleeding with my period so bad that I'm going thru a super tampon and a pad every hour.

    I'm scheduled to have another cat scan this week and am just worried because how can Anyone function if you constantly have to go the bathroom and in pain that leaves you breathless ..

    • peter54321
      peter54321 lisa_53285

      Posted

      Hi Lisa,

      Sorry to hear of your troubles. It can be a bit dificult post PE, as most of us never heard of them until it happens, so we know nothing about them.

      Xarelto seems to be the anticoagulant of choice these days, but it is not for everyone. Most people get on fine with it (my wife's friend has no side effects whatsoever) and some have problems. I had bad joint pains in neck and knee massive headaches and bleeding. I was swapped onto warfarin and the the side effects all went. Someone else on here also had bleeding problems on Xarelto that went when he switched drugs.

      If I were you, I would go to the doctor or ER. Losing that amount of blood can't be good for you.

      Hope you get sorted soon.

      All the best Peter

    • amanda0724
      amanda0724 lisa_53285

      Posted

      Hi Lisa!

      I had the exact same problem. I didn't have chest pain until 2 weeks after starting 15mg xeralto 2 times a day. It eventually went away. Also got bad headaches at first and numbness too. dr's said maybe the clot was moving and being absorbed. must have been true as 2 weeks later a CT showed the clots were gone. I also bleed alot during my period...unfortunately that will always be as long as I'm on the thinners. Make sure your iron is ok because of the amount of blood loss. I am taking a iron supplement right now.

      Hang in there. I have not felt much relief post PE 3 months (still short of breath), but i am hopeful this gets better.

      Amanda

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