I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: sherrile on March 13, 2007, 01:51:55 AM
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Well, I called the transplant coordinator to find out what My Son's PRA value was this month, and it's 53.
She then went on to tell me that even tho that sounds good, they go by his Histologic PRA when it comes
to crossmatching, which, I guess, is the highest its been, which is 73. Not good. So I asked her to just
give it to me straight-what does that do to his chances??? She said "Don't expect a kidney this year." I
said " what do you mean?" She said it could be years away. Okay, I know I asked her not to beat around the
bush, but still felt like the rug was pulled out. I asked her if anything could be done to help lower these antibodies,
and she said that she might be able to refer us to a different hospital. Soooo I am not sure where we are going on this path.
I have a kidney for him. Thats why I keep reading Jill D's post over and over. I find a glimmer of hope in reading it.
Sherri
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No one has a crystal ball, but it is just her opinion. You could get another opinion couldn't you? Unless I'm mistaken.
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Sherrile, I contacted Johns Hopkins on my own about their sensitized transplant program after my transplant center said I probably would never get a kidney. They are doing extensive blood work with myself and my son (you have to have a living donor). I also contacted Carolina Medical Center and they have already scheduled appointments for me. You need to research other transplant centers who have the sensitized transplant programs. What area are you in? California has several centers that do this. Also, some do IVIG therapy to lower the PRA. I have learned to stand up for myself, ask tons of questions and search the internet. The work being done in this area is growing quickly - don't let the PRA number discourage you. With ESRD there always seems to be one more step---nothing is easy. Please keep posting. JIll has been my guiding light! With a PRA of 100, I didn't feel like I had much hope; but now I do. Thank goodness for this site!
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Sherrile - I'm so happy that my experience has given hope to you and Paris and possible others who are here or may be looking for information on positive crossmatch transplants. That's what make this site so awesome...God Bless Epoman!
If it is an option at all to make an appointment at Mayo Clinic in Minnesota, I HIGHLY recommend it. Things moved very quickly for me there, and I think the fact that my sister and I had already been evaluated and "accepted" at another center made a difference in how fast the process went.
I totally know the devastation you felt when the surgery was cancelled. Just imagine how I felt when I had my first appointment with Dr. Gloor at Mayo and he wanted to know "my story" - when I got to the part where I said "I heard you have done a lot with positive crossmatch patients", he looked right at me and said "more than anyone". I KNEW I was at the right place!!! I still get chills when I think about it. I absolutely love everything about Mayo...the patient is number one, no exception!
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Good luck sherrilem never give up. The nurse can only give her opinion, she don't know for sure, she is just going off of what she has dealt with and so forth. I would take Jills advice and see what happens.
Good luck!