Crappy News Today

What a day! 
Right now I am getting my house in order so it's not pure chaos on my return.  I am also washing clothes and packing for Maci to be admitted to Le Bonheur tomorrow.  She will be getting another peritoneal dialysis catheter on Thursday or Friday to begin dialysis again.  We knew this news was coming but had hoped it would be a bit further down the road or completely avoided because of her receiving another kidney.  Well we are moving forward with catheter placement because......

We also learned some additional, unexpected, very disappointing news.  Since Maci is listed for transplant, we send in monthly blood work to Nashville.  It is called a PRA (Panel Reactive Antibody) test.  The results are in a percentage. The lower the percentage, the better because this increases the potential for finding a kidney match or rather the better chance of not rejecting a donor kidney.

Here is how the PRA test works:
"In order to determine whether or not a patient already has any specific HLA antibodies, a lab specialist will test a patient's blood (serum) against lymphocytes (white blood cells) obtained from a panel of about 100 blood donors. These 100 donors represent the potential HLA makeup for a donor from that area. Percent PRA (%PRA) is the number of reactions within that panel. If a candidate's serum does not react with any of the donor samples, the candidate is not sensitized and has a PRA of 0. If a candidate's serum reacts in 80 out of 100 samples, the patient has a PRA of 80%. Theoretically, that means that if a donor becomes available from that donor pool, the recipient would experience acute rejection 8 out of 10 times. That patient might have to wait a very long time until a compatible donor becomes available. This is why the kidney allocation algorithm gives patients with a PRA of 80% or higher, 4 additional points."
Information taken from http://optn.transplant.hrsa.gov/resources/allocationcalculators.asp?index=75 and this site also provides more detailed information.
 
Before transplant, Maci's percentage was less than 5%.  Blood was taken the day her kidney was removed and the percentage was still low.  Last week a blood sample was sent that returned with a 98%! 
There are more questions to be answered and Rick and I will be discussing things further with the doctors for options to possibly increase the potential of finding Maci a donor.  Things mentioned today were listing her in other areas such as Jackson, MS, her being listed nationally due to her high PRA percentage and decreased prospects for a match here locally and the possibility of using a treatment to desensitize her (lower the PRA percentage) which is not guaranteed and has risks. 
We have a lot to discuss, research, think, talk and pray about.
Our high hopes of getting a new kidney "any day now" were pretty much grounded today. 

My child is one heck of a fighter and a true little warrior.  She continues to make me so. very. proud.  This is NOT fair to her.  What she has been through, is going through, will go through, is NOT fair.  Speaking honestly, I am angry.  I am extremely angry and confused.  I don't know why Maci has to continuously endure one complication and challenge after another and I wish I could go through this FOR her, not just with her.
 
I need a prescription for Xanax and a therapist.  In the meantime, please just keep us in your prayers.  They are needed now more than ever.  THANK YOU! 

The face of my sweet, precious, napping baby who endures so much!