Question for Jill D

[sherrile]

Hi Jill!  Sherri here.  I have read your posts over and over about Plasmaphoresis, and I really feel it might be the
way for Levi to get my kidney.  I spoke with the transplant surgeon here, and he said his concern was with
the antibodies coming back, which doesn't make a whole lot of since to me.  Doesn't plasmaphoresis get rid of
them for good??  Was that ever mentioned to you?? I really feel that we may have to look out of state.  We have a
visit with transplant surgeon on Monday, and I want to be able to discuss this all with him.  I know that they do
plasmaphoresis here, I just get the feeling they may not be real proactive about it, and I want a place that
has done MANY, and knows all the IN and OUTS about it. 
So happy you and your Sis are doing well, and you are out of that CHAIR!!! 
Sherri





EDITED: Moved thread to proper topic - Sluff, Moderator

[paris]

Your plasma is removed ( where the antibodies are) and  replaced, thus giving you a low PRA.   Many hospitals do plasmapheresis for lots of problems, but most don't do it in conjuction with a transplant.  Where is your transplant center?   Keep asking questions. I am the first case of 100% my very large nephrologist office has had and they couldn't tell me what hospitals did the procedure.  Thank goodness for the internet.    Keep posting - we will all try to help.  I have appointments all day tomorrow with a center, to see if they will accept me in their sensitized program.   Google "sensitized transplant program, Johns Hopkins" or the same program at Mayo. Lots of good information.

[Jill D.]

Hi Sherri,
Your question about antibodies coming back is a good one...and one that I had as well! Your cells have "memory" so the antibodies are not gone for good (and you wouldn't want them too, as you need some of them so you don't have to live in a bubble!) The idea with the plasmapheresis is that they bring down the levels to where the transplant can be done without having acute rejection, and then keep the levels down while the new kidney establishes itself. As my nephrologist at Mayo, Dr. Gloor, believes, once the new kidney is initially accepted, any further rejection can be handled with the immunosuppressants. For instance, my b-cell count was around 400 pre-transplant, and it needed to be at 300 before transplant (don't ask me details of what the counts mean...there are also specific antigen beads that come into play. Dr. Gloor explained everything to me and my husband in a way that made sense, but I'm afraid I can't explain it myself!) Anyway, my count was at 150 four days before surgery, and on the day of surgery it was at 92! After 2 weeks of treatments post-transplant my antibody count did start going back up (a little above 300), which caused me some concern. Dr. Gloor didn't seem too concerned, and my labs were good, but I did have a biopsy 2 weeks post transplant just to be sure there was no rejection. If some rejection had been indicated, I would have had a spleenectomy which would keep my antibody count down.

My center in Michigan wasn't very proactive, either...in fact, I didn't know anything about plasmapheresis until after I read an article about it. When I asked about it here, I was told that it was "experimental" and "expensive". However, after I had been evaluated at Mayo and had my new surgery date I called the center in Michigan to give them an update on my status. My coordinator said, "We have done a couple of those transplants in the last few months, so the doctor may be willing to do your transplant here after all." Yeah, right! No thanks...I'll go somewhere where they have done a couple of HUNDRED of them, thank you very much!

I don't remember if I posted this link in another thread, but this is a very informative article on positive crossmatch transplants. It's a little old, so some things have changed but is interesting nonetheless: http://discoverysedge.mayo.edu/abo_posxmatch/

All the best to you and your son...there is hope for you, I just know it!!!!