Has lupus caused irreversible end of life disease with you?

I am a 39 year old married mother of 2. I’ve had lupus symptoms since around 15 that I can recall, but was diagnosed in 2008. I’ve been on chronic prednisone therapy and cannot stop taking it because it causes addisonian crisis and Addison’s disease. Lupus has made me totally deaf in 1 ear, caused kidney fauailure acutely, has affected my lungs, at 1 point causing blood in the air pockets of my lungs. I am on oxygen 4aLiters constantly due to lupus making my liver and spleen so. Large I look 9 months pregnant with twins. My liver was 23 inches when last measured 2 years ago on ultrasound. I can only lay on my left side due to pain and breathing issues. My heart has been affected. Of course the joint issues and the extreme fatigue and feeling awful. My whole body is atrophying away. Up until about 4 years ago I could take care of myself and everybody, now I’m on hospice and can’t do anything.

2 Answers

  • Anonymous
    6 months ago
    Favorite Answer

    Don't mean to be depressing but lupus killed my first wife at age 39. Very similar situation to yours except it also caused a stroke that left her hemiplegic for 2 years before she passed of heart failure. I very much feel for you and you have my best wishes. She found solace in believing there was a reason for it all even though she couldn't see it and sh remained brave and stoic until the end. I wouldn't wish that on anyone but the experience made me a much better person. Maybe that was the reason or maybe it wasn't but I'm grateful for it

    • MOMMA_1979
      Lv 4
      6 months agoReport

      I’m sorry for your loss. I believe there is a reason for everything even though I don’t understand why. My body is bruised from head to toe from liver failure. My poor husband struggles wanting to take this from me and my heart breaksFor him and my kids because they all don’t want me to die.

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  • k w
    Lv 7
    6 months ago

    read this [ archive.earthclinic.com/assets/selecttemplate.php?pageUrl=/cures/lupus ]

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