One Step Forward, Two Steps Back

I’ve been on the national and regional deceased donor waiting list for exactly one month. I didn’t expect to actually hear anything at this point because the average waiting time for a kidney from a deceased donor is 3-5 years. As I discussed in an earlier post, receiving a kidney from a living donor is better, so I’ve been hoping this would happen for me. I was disappointed when Jason was ruled out because of a kidney stone he had about five years ago. However, I had a friend who also had the same blood type and had begun the process of being evaluated to see if she was able to be a donor. Another person also contacted me about beginning the process. I was so grateful that two people were willing to do this. Both had progressed through the stages up to the point of where the cross matching was done. This essentially means that my blood is mixed with theirs to see how they react to each other. If there is no reaction (a negative cross match), then the recipient should be able to accept the donor’s kidney. If there is a reaction (a positive cross match), then the recipient’s immune system has killed off the donor’s blood cells, which would mean the body would do the same thing to a transplanted kidney. It would want to fight the “foreign object” put into the body.

Part of being on the transplant list is having monthly antibody tests. Today I learned that I have a higher level of antibodies which means that I will have a more difficult time finding a match because I’m more likely to reject a donor. My last test showed my Panel Reactive Antibodies (PRA) to be at 42%. That means that 42% of the population will not be able to donate a kidney to me. The antibodies present in my blood will attack the transplanted kidney and cause rejection. This was discouraging to learn. Then the discouragement got even greater when I learned from my friend that we aren’t a match because my antibodies were reacting positively to her. Positive is usually good, but in this case positive is bad. She had also heard from the transplant center that the other person in the process was also having the same issue. My antibodies were fighting against them! Why must they be so difficult?

I had hoped that one of these two would be my match. I’ve been hoping to get that call that gave me good news that I’d be getting a healthy kidney. Sadly, this will not be happening. At least any time soon. My nurse coordinator said that I need a donor with DNA that is more diverse than my own to have the best luck for a match. She said they are exploring some options for me and that I shouldn’t give up hope.

It’s hard not to feel discouraged at this setback, but hopefully there will be something else that comes along that will work for me. The waiting game continues.