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.
3 comments:
Julia,
Thanks for the post on my Kidney problems caused by Sjogrens. I think it is important to let others be aware that it can be more than dry eyes and mouth, fatigue, and joint/muscle pain. Yes, those symptoms can be extremely hard especially in a flare up....but the Doc's need to check out the less obvious things it can do too! Mine will have known for almost 4 years of my kidney problems and their attitude was that...you will be fine, it RARELY ever gets to the point of possible dialysis or transplant. It's just unheard of...
I honestly went by what they told me....Sure I looked things up on the internet...but let's face it...there is hardly anything on SJS and kidney disease. I think that needs to change. I am one small voice, but I have been told I can yell with the best of them. LOL
Vicky, thanks for sharing your story. I am so sorry that you have to face such difficult times! I appreciate your candor and willingness to share with others so that they may not have to deal with problems such as yours. Be sure to keep in touch, and I am sending my prayers for you.
What ever happened to Vicky? Did she receive her transplant?
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