yet another question for Jill D.

[sherrile]

Hi Jill!  So glad you are doing so well!   Levi and I had another crossmatch done.  Results came back
that he is having a moderate B cell reactivity to me.  I have been on the phone to transplant coordinator
for past week, and she said that since it was moderate and not mild that they werent really sure that
ivig would work.  Apparently, after talking to the Doc, and immunologists, the Doc is saying that
they think now it is feasable.  I am just wondering if the opinion was hers or docs.  Anyhow...my
question to you is ...was your reactiivity with the B cells  mild, moderate or severe, or did they
ever tell you?? Thanks Jill!  Sherri

[Jill D.]

I don't believe the doctor ever used the terms mild, moderate or severe. This is what my doctor at Mayo wrote in my evaluation report: "She has been found to have 100 percent PRA for HLA class 2 using single antigen flow beads." I think this means that if I were tested against 100 possible donors, I would be a positive cross-match to all 100. I was told that this fact moves a person up on the transplant list, but what are the chances of being a perfect match and not reacting to a donor's tissue? Seems like a big zero to me!

He also wrote, "She had a negative T cell flow cytometric crossmatch in August 2005, with her sister, but at that time she had a positive B flow crossmatch shift of 362 (positive cutoff 98)." The 362 number was up closer to 400 when I started plasmapheresis and ivig prior to my transplant, and they needed to bring it below 98 in order to do the transplant. I met another woman around my age that was about 1 day behind was I was going through. She needed a 2nd transplant desperately because her first had failed and dialysis was causing her to have a rare skin condition that could eventually be fatal. I saw her at the transplant center the week after my transplant and asked her how the transplant had gone. She told me it hadn't because they could not get her antibody count down. Her crossmatch shift had started in the 500's and they couldn't get it below 300. I felt so bad for her, and I think of her often because I never saw her after that. I think they were talking about removing her previous graft and that would do the trick. Obviously because of privacy laws I couldn't even ask about her.

My point is (sorry to ramble), that even though the 100% PRA and the crossmatch shift of 362 may sound severe, I don't think it was as bad as it could have been.

This is very confusing, although when my doctor would explain things like channel shift, antigen flow beads, etc. it would actually make sense (just don't ask me to explain them!)

Do you know how many positive crossmatch transplants your hospital has done?

[sherrile]

Hi Jill!  Thanks for writing me back so quick!!  boy, the things ya have to learn to try to get a handle on this stuff!!  The
Hospital we have been dealing with is here in Colorado.  We live about 50 miles north of there.  We have an appointment on the 16th of
next month to speak with them about the MANY, MANY questiions we have.   I also have spoken to Bridget at the Mayo in Minnesota.  At least I feel like
I am doing something!  Levi's PRA is 53, and has been as high as 75.  They have also told us about the extra points thing and "Oh don't get
discouraged, he has a type A blood type."  Well you and I know that doesn't mean a whole lot with this PRA .
  I hope that women you met got her transplant.   It's tough, rules bieng what they are that you can't  just call and find out.
Anywho.... thanks again for writing me back!  Sherri

[okarol]

On Jenna's final crossmatch, the day before the transplant, there was a "mild B cell sensitivity" and the transplant team said to "be cautious and conservative" they were going to do plasmapheresis and IVIG the day before and the day of the surgery. She also had IVIG on day 5 and day 21. We were concerned but were reassured that it was not something that would delay or cancel her transplant. They have ordered a lab for the 3 month follow up that includes a T cell and B cell crossmatch, so they will always be watching it, but so far all is good.

[Jill D.]

That's interesting Karol...maybe mine was closer to severe than I thought since I had 11 plasmapheresis and IVIg prior to transplant (including the morning of the transplant) and 14 treatments of both afterwards. They were able to bring the number down to 95 a few days before transplant and to 70-something the day of the transplant, so they knew what they were doing!
My doc mentioned doing another crossmatch when I was out or my four month follow up. I'm glad you said something about Jenna having one because I haven't heard anything from my coordinator!