;D I still haven't gotten the final ok from the transplant team, BUT I did get encouraging words today. I dug around and asked a few questions to my transplant coordinator on her thoughts of me getting in their program.
BIG SIGH OF RELIEF!
The hold up is that one of their senior physicians was out last Friday and just got back into town today. They are reviewing my chart tomorrow afternoon and it is to basically discuss how to care for me prior, during, and after transplant. They want to make sure I get the best possible care and this is a little different than what they have dealt with in the past. You know.....the Sjogrens causing kidney failure. They want his opinion on it and address any concerns he may have. (hopefully none that they haven't thought of already) But the rest of the team has given me the thumbs up.
Please pray and send positive thoughts that I get the official word by Friday.
Take Care!
Vicky
Vicky,
you are in my thoughts and prayers, please let us know when you find out.
Collie
Oh Vicky.....I'm sending lots of prayers and good, positive thoughts your way! I really do hope you hear VERY soon.....please keep us updated! It sounds like its going in the positive direction to me.
Hugs to you......hang in there.....(http://www.freesmileys.org/smileys/hug008.gif) (http://www.freesmileys.org)
Glad to hear it sounds like this will work out for you. We will keep you in our prayers.
Genko
I'm right there with you Vicky... I know you will get a "yes" on Friday... Boy, this has been a long couple of weeks for you ! Stay strong and keep your positivity... You are an important patient to that team and they will get everything exactly right for you...
You work at a hospital, right ? I used to work for a teaching hospital and cases like yours would make it to Grand Rounds where all levels of medical providers gather once a month, a team would present a 'rare' or special case and everybody learns invaluable information... Grand Rounds or not, I'm sure a lot of people will learn from you ! I'm off to light a candle... Hang in there...
Fingers well and truly crossed for Friday! That does sound encouraging though! :)
I can feel that kidney filtering already.
It sounds pretty good Vicky. I cannot wait to ear on Friday. I'm sure you will be on the edge of your seat. All available or should i say able body parts are crossed for you my friend.
Pud
Thanks and more thanks to all! I have learned that I can't think of the "big picture". I know what I want it to be....but I have to break the overall goal down and jump through one hurdle at a time.
Seabreeze, I do work for a hospital. We teach too, but not anything to do with transplant. We send them to MUSC, Duke, or Emory. Yeah, I was told that this "knowingly" hasn't been done on someone who just has Sjogrens. It has been other autoimmune dieseases they have dealt with. They took 21 tubes of blood from me to run a zillion other autoimmune tests and anything else they could think of...JUST to make sure something was not overlooked. And guess what????? All they can come up with is Sjogrens has caused my kidneys to start failing.
I hope this will educate health profressionals that something like this could happen....not likely...but possible with Sjogrens patients. I just don't want to scare anyone that thinks they have kidney issues related to Sjogrens. I am an unusual case and normally it will never get to the point of needing a transplant.
Take Care!
Vicky
www.sjogrensandme.blogspot.com
Any word today Vicky??
Lynnmarie,
No final thumbs up yet. I am very frustrated, but still optimistic. I am told that the transplant team can't get a hold of my Rhueme. *SIGH* I am not sure if they mean the one at MUSC or here at home. Either way, both were all for the transplant and both felt that the BIG autoimmune suppressant drugs for transplant should put the Sjogrens to bed for a good while.
I promise to let you all know something when I hear something new. I am just hanging on....
Thanks,
Vicky
www.sjogrensandme.blogspot.com
Well keep hanging on and we will be there with you in spirit!
Keeping you in my thoughts.......and still sending you LOTS of hugs! (http://www.freesmileys.org/emoticons/emoticon-object-080.gif) (http://www.freesmileys.org)
Sending you fresh fingers to hang with Vicky
Yours must be getting tired.
I'll keep everything crossed
Pud
Hi Vicky,
Count me in as also wishing you the best! Hang in there and keep us updated, okay???!!!!
Patze
Hi Vicky,
I was thinking about you today..
How are you doing ?
Thanks Seabreeze! I am going to have a great Thanksgiving.....I am on the list for transplant at MUSC. I have another friend that has come forward to be tested as a live donor. This makes 11 in all. ;D It has been really cold here in South Carolina the past couple weeks and my body doesn't want to cooperate.
I started Cellcept today. I am taking 250 mg twice a day. My blood work numbers for Sjogrens are SKY HIGH...But I knew that....
I think my ANA Titer is like 1:1260 and rhuematoid factor was over 2200. So.....I am definitely having a flare.
I noticed something interesting about the EBV titer (Ebstein-Barr Virus)
I have seen articles that they think this could possibly trigger Sjogrens and many with Sjogrens have high numbers on this. Maybe LynnMarie can give me insight on this. ;)
How are you doing SeaBreeze?