I read the most recent post by Vicky at Sjogren's and Me with dismay, and have copied excerpts here. For those who consider Sjogren's simply an inconvenient disease affecting saliva and tears, it is a wake up call to the reality of the body-wide effects of this syndrome.
I wish I had great news for everyone.....but I will be officially put on a live transplant list. I will be hearing from the transplant team at MUSC in the next couple of weeks to get the ball rolling. I am scared. I am worried. But most of all....I am MAD!...at least I am being taken care of and she was smart enough to refer me to MUSC. NOT TO MENTION...I have recently taken a big part of my care into my own hands and educated myself on Sjogrens and what it can do to organs!
Yes....Sjogren's is the culprit...... I do have much more to say and will later this week. I want to explain why MUSC has come to this decision and what the next steps will be. I am learning about the finacial aspect too.....which would make a sane person go nutty.
I have one four letter word..................that comes to mind.........NO, NOT THAT ONE! ;) Although.... I have thought of that four letter word too! It is......HOPE.
We will keep in close contact with Vicky. Hang in there, girlfriend.
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