Heavy heart tonight

[busymom9501]

So, we went Friday for our last cross match and lab work. I have already passed the cross match two times here in Wichita but since the surgery is scheduled in Oklahoma now they had to do one more test. Our surgery is scheduled for Monday, the 23 rd. I got the call today that there was a positive crossmatch this time.

I am beyond bummed. My heart is heavy for my recipient. I'm so baffled as to how this happened!! How is it that I can test negative twice at one lab but have a "big reaction" at another lab?! Neither of us have had any transfusions or done anything differently! 

Is it possible they had a false positive??  Does that happen?  Just thinking that one phone call could stop this just makes me want to throw up.  It doesn't seem real. I'm at a loss as to why this is happening again!  (we were scheduled for transplant on June 12th but a week before our transplant the transplant center closed Down)

While I continue to trust in our awesome God it still makes me sad.

[elephant]

Dear busymom,

That must have been a painful blow.  In addition to repeat testing, I think you can talk to your transplant team about other options, including plasmapheresis to desensitise the recipient and paired donor exchange programs.  Keep us updated on your progress.

Love, elephant

[busymom9501]

At first they mentioned plasmapheresis but it would cost my recipient $25,000 and insurance doesn't cover that cost.  However, they were going to mortgage their house and find a way to make it work but late yesterday was told that that may not be an option any more.  She has some clotting issues with her blood and they thought that it might put her more at risk.

I did tell them I would do a paired exchange if something became available. 

My recipient is calling back today to find out more specifics and to see if there's a possibility of doing a re-test.

[Fr Pat]

     You might want to look for more info on "kidney swaps" at www.kidneyregistry.org and www.paireddonation.org  . Some hospitals are involved in these nation-wide exchange organizations, while other hospitals may be looking for a possible "swap" only among their own patients/donors. Also keep in mind that now they have greatly improved the methods of keeping a kidney in top condition during flights to another hospital. So exchanges can be arranged now even if the donors and recipients are having their surgeries in distant cities (as long as the two hospitals are willing/able to take part).
  Fr. Pat

[lawphi]

Look into desensitation centers, like Johns Hopkins, Mayo and somewhere in CA.  They will treat the crossmatch and allow donation.  If the match isn't good, all three centers have access to a huge paired exchange list.

[busymom9501]

Thank you for your suggestions! I will pass that info on to my recipient!

So, here is what we found out today.  One of my antigens...B44 to be specific, was the culprit.  Here is what I don't understand.  From what we learned today, when they "score" these antigens they need a score of less than 300.  My B44 was at 3400!!!!  How is that even possible that it went undetected TWICE at the first center?  May be the reason the first center got shut down?  Who knows.

We will continue to move forward and see what we can do!

[lawphi]

Essentially, antibodies can develop at different times.  Each center has a calculation for an acceptable reaction and runs the same test.  You can have minor reactions and nuclear reactions.

Is this your recipient's first transplant?

[busymom9501]

Yes, this would have been her first transplant. 

[Donna Luebke]

Pregnancies and blood transfusions can alter the match.  Has your recipient had any recent blood transfusions?  There is variability from one program to another as to  compatibility testing (no national standard for matching.)  To ease your mind, you and your recipient should ask for copies of the tests.  And ask for an explanation.

[Karol]

Our daughter Jenna had a positive crossmatch 3 days before her transplant (prior tests had shown no problem) - but doctors felt that with desensitization they could minimize this problem, so we went forward with the surgery. Now, after chronic rejection over the last 5 1/2 years, she needs a new kidney. Doctors know more now about tissue matching than even 6 years ago, and feel that this B cell sensitivity contributed to her loss of the kidney. The bigger problem now is that Jenna has "donor-specific antibodies" and has become 100% sensitized, meaning she would reject 100% of the general population's kidneys. Finding a donor is going to be even harder than the first time. I mention all this because I think there are 2 things to consider: One, the final crossmatch was (in Jenna's case) an expensive, all encompassing test that shows even a mild reaction (although sounds like your case is a big difference in antibody levels); and two, it's good to have the best possible match for the recipient, as well as avoiding having a donor go through the risk of surgery for what might end up to be a short term gain.
I am sorry for all the frustration - you really have gona above and beyond and I hope it all works out in the end. I agree with the others, the recipient could enter a paired donation exchange and if you're willing, could eventually get a transplant due to your donation to another patient.
Good luck!

[busymom9501]

Apparently, OKC is just as baffled by this as we are. They certainly weren't expecting this. We have been the topic of conversation down there for the last 3 days which I guess is good?  They're not sure if maybe one of us was developing an infection or what. Neither of us have had a transfusion and neither one are pregnant. We both got put on the paired donor list too. They are opening up the live donor applications again for her but in 6 months if she still hasn't found a match they will do another crossmatch on us. So, I'm glad they haven't completely ruled me out!

Karol, I sure hope things work out for your daughter. I can't imagine how hard that is. I will be praying for a match even though the odds arent too much in your favor. Anything is possible with God!

[Karol]

There's still so much we don't know. Luckily kidneys are an area of medicine where there's lots of research ongoing.
It sounds as though the transplant team is doing their best, despite the baffling results. I hope something works out.
Thank you, appreciate your support!