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I have been fighting this demon we refer to as Lupus for 23 years. I have had cardiac involvement from the begining. I have become accustomed to all the not so fun thinks that go along with that but now they tell me out of the blue that my kidneys, liver and lungs are also failing. They want to run more tests on my kidneys, a biopsy (while wide awake)..This does not appeal to me on little bit. Anyone have multiple organ involvement??? Help
 

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Hello, my problems are not as widespread as yours, I just wanted to reply to you. I am sure someone will be along who can help you more.
x Lola
 

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KJ,
Our generation of sle are living longer than previous generations did. We are writing the history for those who will come after us will follow.

I have lost about 60% of my lung function and have interstitial lung disease from the sle. I have so far skipped heart involvement, but have brain involvement as well. Due to taking high doses of methotrexate, I have had 2 liver biopsies done as well. For those, I was given a sedation and local anesthetic before the biopsy was done. The hardest part with that is the requirement to remain immobile for several hours after to avoid hemorrhage. While they will never be on my list of favorite things to do, it was not the worst thing I have gone thru.

Have the doctor who will do it, go thru it with you. Explain your fears and how you are concerned about the procedure. When I have expressed my concerns about various procedures, my doctors have gone thru it with me. We dealt with them all before I got to the hospital to have it done.

I wish you well in this. For myself, I figure these things are the price I pay to stay alive.

I have had good luck in the past using a cd or tape to listen to while all this is going on. I find if I can block out the doctor and nurse talking, I do much better.

Stay well,
Sally
 
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