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UNPROVOKED PE in both lungs and now DVT in arm

Posted , 5 users are following.

Ab1125
Ab1125

Hi everyone this experience is absolutely horrid and scary. I'm currently going through unprovoked PEs & unprovoked upper-extremity DVTs.  Dr.s are all at a loss because mine were both separate incidents, both unprovoked and all my blood work has come back excellent. I'm hoping someone might have experienced  a similar situation with a similar lifestyle. 

I'm a 36 yr old female non-smoker, never used hormone or birth-control pills, never been a drug user, active lifestyle, absolutely no trauma, have not been traveling, I do not drink, vegetarian,.....

I went to the ER a week ago Saturday with chest pain and right arm swelling. The ultrasound of my arm was negative for any clots and so was my chest X-ray...but the CT dye scan showed I have countless PEs in both lungs. I was put on Eliquis and sent home on Sunday. Wednesday morning my right arm and chest wall looked like The Hulk, all the veins protruding and swelling unfortunately I could not breathe but I made it to the ER. I now have extensive large blood clots under my clavicle, arm pit and down whole arm. After 2 days in ICU and on a Heprin drip I still was not able to get therapeutic. I was switched to Warfarin and Lovanox shots. I spent 5 days in the hospital, now I'm finally home.

I have fantastic Drs but none of them have any answers and because of the severity of my clotting and being unprovoked the outcome is Warfarin for life most likely. I own a horse farm and a hair salon... I can't work for the next month and I'm not sure if I will ever be able to have the active lifestyle with my horses as I did before. We have 4 children and I am in so much pain when I breathe and I'm so so tired it's difficult to move around much.  The pain in my lungs come and go???

 I've never experienced any health issues, I'm extremely health.  This has been devastating to me and my family. I'm so greatful to have found a chat room with other PE/DVT survivers. Hoping someone might have some answers or suggestions for my situation. Praying I don't have to be on blood dinners for the rest my life but it's not looking promising . Thank you in advanced for any replies they're greatly appreciated I hope everyone has a beautiful day. Xxoo

1 like, 21 replies

21 Replies

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  • Sway
    Sway Ab1125

    Posted

    Did they check to see if you had factor v or protien c deficiency? There blood clotting disorders. I to had unprovoked pes back in november 2016. They took me off eliquis in may and so far so good. I do not have factor v or protien c deficiency but something to look into. Lupus could be a cause to my nom has it.
    • Ab1125
      Ab1125 Sway

      Posted

      Hi Samantha, yes I've had all the tests done that is possible without  going to a speciality hospital like Mayo. Not sure if it's a positive or a negative but all my tests have come back ok.  

      Unfortunately I have now had 2 unprovoked separate incidents of clots so my Drs are puzzled. It's all extremely unnerving. 

      Thank you for replying!

    • sue28123
      sue28123 Sway

      Posted

      Yes I had all those test. All came back in normal range except the homocysteine level was elevated.
  • sue28123
    sue28123 Ab1125

    Posted

    Doctors don't know where mine came from either. Definitely not from upper or lower extremities per the ultrasounds. On the Coumadin too with all the lab testing to keep within therapeutic levels. Monday's was 2.8. The referred pain to other parts of chest painful. Least not having a heart attack per yesterday's EKG. I'm glad this chatting is available too. The lack of support is hard. Now I'm about 3 weeks post diagnosis of PE and the emotional impacts are rearing their ugly heads in my life. It helps to read how all of you are dealing/coping with these catastrophic events.

    • peter54321
      peter54321 sue28123

      Posted

      Glad to see your inr has reached a good level. The range for prevention of PEs is quite wide (2.0-3.0), my nurses always said they preferred it if mine was in the upper reaches, so 2.8 sounds perfect.

      The emotional side is harder.  The better you feel in yourself, the less likely you are to have issues. Keeping yourself in that frame of mind is easier said than done. I find busy is good. Once you are back on your feet, most around you will kind of forget about your scare...("if you look ok, you must be ok"wink and I doubt you will want to remind them. That kind if leaves you a bit isolated, so let rip on there if you need to.

      On the positive side - if your words on here are anything like a reflection of how you feel, you are doing pretty well for three weeks post PEs.....

      .....and days when you are "not having a heart attack" count as good days cheesygrin

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