Ok here is the dirt

First of all, my issues are.......

Lupus is way outa hand and in a full fledge flare

Rhuemetoid Arthritis

Severe Parenial Sp? swelling

 

My Lupus is attacking my liver, it thinks it is a bad cell in my body so it is killing the cells one at a time and I might be in liver failure right now, also my blood is being stubborn and refuses to clot fast enough.

 

I went to the hospital Monday and had 6 yes I said 6 LITERS of fluid removed from my paranemal cavity, now i have some relief and can eat comfortably ( my shoulders and arms are wasting away to nothing)  Then was preped for the liver byopsy and it was cancelled because my blood was acting up again.  So i was given 2 bags of fresh frozen plasma to try to fix the clotting problem and preped again but the plasma didn't work.  So they were talking about sending me to a different hospital that was better equipt to deal with a liver bleed if it happened during the procedure.  After many doctors consulted, they decided to just do the byopsy there and hope for the best.  Thank god no bleed.  So now i am just waiting for results to see how much damage there is and if it can be handled or if I have to get on a transplant list.  My legs are completely filled with water and it is hard for me to walk.  I am taking tons of diruretics for that and on tons of vitamins to try and fix what I messed up for skipping my vitamins for so long.  I am completely exahsted and sore.

My heart is aching for you Jess...oh my gosh so much to deal with!! My thoughts and prayers are with you!

Please keep us updted.

Hugs....connie d

Thanks Connie, I should know something more within 2 weeks.

Jess,

I am praying for you!! My mom has lupus, rheumatoid arthritis and auto immune hepititus and she was going to be put on the transplan list 3 years ago....I moved home from San Diego fearing the outcome. She never ended up needing the transplant and has been pretty stable for the last 3 years. Hopefully they can get it under control.

Ok, they were originally calling it autoimune hepitius but changed it to lupoid hepititus.  What ended up happening that she was ok?  Can you ask her what her liver levels were at?  Mine are 280.

Interesting with the change of diagnosis. They were able to get her on some different steroids that have been holding her steady. Not sure which ones. I will find out for you. I remember her levels were through the roof. She went through all sorts of tests. In the end she would have to stop smoking for them to put her on the transplant list...which she won't do as its her way of dealing with her physical pain. She smokes 3 packs a day (not good). Not sure where her levels are now??

Thanks for any info you can get.  right now I am on a taper down dose of prednisone starting at 60 mg and 200 mg of plaquenil.

My mom said her levels were in the low 200s. She is doing prednisone and plaquenil too. I didn't ask her the doses though. Hav they made any decisions abt transplant list for you??

Oh Jess, this just sucks no matter how you look at it. My thoughts are with you and Jackson. How's he doing?

He is a little crazy right now with me being sick but otherwise he is doing good.