Monday, August 4, 2008

Excuse me....would you please pass a kidney...

over to me? How do you even begin to ask people that? HELLO...it's an organ!



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! I don't think finger pointing is the right answer but I feel like I was let down by my old rhuematologist and maybe even more so by my current nephrologist office. I wish I had listened to my gut instinct over a year ago...even longer. I felt like I was being pushed back and forth like a hot potato between my two doctors and no one wanted to take some sort of initiative to put me on the "BIG" autoimmune suppressant drugs. I am glad I finally switch rhuematologists a few months ago....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. MUSC currently has one other patient they are monitoring with SJS and CKD by itself and 4 others with Lupus/SJS/CKD. 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...



2 comments:

Julia said...

Oh, Vicky! I am so sorry to hear about the possibility of transplant! Glad to know that you have options, but still....

May I post a copy of your "Excuse me..." post on my blog? i think it was well written and has an important message.

Hugs,
Julia

Vicky said...

Sure, you may use my post on your blog. It would be nice. Thanks so much.