On Monday, February 9, I called the abdominal transplant line at University Hospital in Jackson, MS. I simply said I wanted to donate a kidney to my uncle and they took my call-back information. They told me I would receive a packet in the mail. It seemed somewhat anticlimactic! I waited! Almost two weeks passed with no word, nor any mail. On February 25, I called again. During this time frame, there had been personnel turnovers at the hospital. As it would turn out, this was to our great advantage!
The process of “live organ donation” is long and can be enhanced or complicated by personalities involved. It shouldn’t be this way! But where there are people, there are personalities and that is just reality! The process begins with being assigned a donor coordinator or case worker. The donor and the recipient have different coordinators. It seemed to me it might have been easier had we been assigned the same one. (More later about what I think was the first miracle in our case!) But, many times donors do not know the recipient. At the end of the day, the purpose in having different coordinators is to insure they have you, the donor or recipient, as their main interest. It insures their loyalty is to you and what’s in your best interest! It insures that should difficulties arise or decisions need to be made that are hard, the coordinator has only your interests at heart. This is standard protocol regardless which transplant center you go to.
To say the coordinator holds your whole case in the palm of her hand, is really an understatement! Coordinators or case workers alone present their findings to the transplant team. The transplant team decides yes or no, based on the merits of each case. The donor and the recipient must both be approved with high expectations of a successful transplant. Every transplant team wants a successful outcome as that not only affects national statistics but also affects their own. The coordinator alone decides when he or she is ready to present their case! Prior to presentation, they guide you through a lengthy period of testing in which information is gathered about your body, that will in turn be used by the team of doctors to decide yes or no. Having a good relationship with your coordinator is very important! The length of the process in itself weeds out many.
My uncle had been waiting a long time. His testing was complete. Dialysis was affecting his body and time was running out. I was fifth in line wanting to donate a kidney to him. I was third to go through the testing. It had not been easy for them and they had experienced some relationship problems with their coordinator, prior to my calling and wanting to donate. I knew this when I called. So I simply prayed and then did what my daughter told me, “trust the system”.
On Wednesday, February 25, when I called again, the coordinator apologized for not sending me my information packet and told me she was leaving the job the following week. I would be assigned a new coordinator. I was impatient that two weeks had been wasted. She assigned me tentative testing days of March 23-24 and told me someone would be in touch and my packet would be on the way. I had so many questions, but knew that I would just be starting over, so bit my lip and did not ask them:) As I was about to hang up, I casually mentioned that I had an upcoming appointment with my internist for my bi-yearly blood test to monitor my thyroid level. I asked her if there was anything I should ask. At first she said no and as we were hanging up she said, “Wait, if you want you could ask her to go ahead and type your blood and screen it for antibodies.” This is the very first step to see if a donor and recipient match. Two days later, I saw my internist and she was excited and approved of my attempt to donate a kidney. She agreed to do the blood typing and screening in addition to my thyroid testing. Down in the lab, the phlebotomist questioned the order for the antibody screening. Apparently there are several and she wasn’t sure which one was needed. I told her why I needed it. She almost burst into tears, which flustered me. After calming down, she told me her story of trying to donate a kidney to her aunt. The transplant team (different hospital, different state) rejected her. I told her how sorry I was for her and her family. Her story reminded me that statistically more people are rejected than accepted, but I decided to trust that voice I had been hearing for almost nine months. She told me not to worry, she would figure out what was needed and would personally make sure the results were faxed to the hospital. I was never so happy to have blood taken. She turned out to be the first but not last person, I learned to trust during the process. She did what she promised!
Finally, it was beginning! Kathy