Update

Today, my mom and I were in Sacramento, down the street from UC Davis Medical Center, where the transplant center is. We decided to stop in just to see if we could find out anything new, as we hadn't heard anything from anyone in a while. We walked in expecting to have to make an appointment and come back. The receptionist made a couple of short phone calls and said if we could wait about ten minutes, someone would be out to talk to us. We moved the car from the 15 minute parking into the parking garage and came back in. A minute or two later, a lady comes out and introduces herself to us and leads us to a part of the room where we could talk privately. I didn't catch her title but she has worked for the transplant center for over twenty years. She talked to us for almost a half hour, talking to both of us, not just one or the other, making sure to answer any questions either of us had. She was very personable and spoke in terms we could understand instead of all crazy medical terminology. She talked about how the transplant list worked and how the donation process worked, explaining both in several different ways. It was very easy to talk to her comfortably instead of feeling rushed or having unanswered questions. She treated me like a real person instead of a patient or a number/name on a chart, made sure that I was comfortable with what she was saying, and tried her best to see things from my point of view of having to go through all of this. Upon leaving, we didn't really know anything more about where I am in relation to the transplant list but we felt much better about the whole process and understood more than we have before. We were also given a donor information packet that explained things about donating a kidney and were told that someone from the donor system at the transplant center was going to give us a call to answer any further questions or to reinforce what we already found out.

I'm asked at least once a week if I've heard anything new about the transplant list or anything of the sort. I usually just say no, as it is an extremely system and it's not just a numbered list of names that you progress up. They don't call you and say "Hey, you moved up a spot!" Today was the first time I've talked to anyone from the transplant center in months. I usually thought when asked if I had heard anything, that if I had heard anything, I would be in the hospital having the surgery. This isn't necessarily the case as there are backups for the best match, backups for the backups, and all kinds of things. There are several different things that have to be tested and matched for a kidney transplant. There are blood types, tissue types, all number of different kinds of antigens that have to be there or not be there. The lists from each center are put into a registry combining all of the different centers and when a kidney becomes available (as they are not just on a processing line. A kidney doesn't just show up. It has to come from a donor or a person who has died.), the people on that registry are checked against the available kidney to see what different things match that particular kidney. The registry is narrowed all kinds of which ways then and only when people have the same match for the available organ, does the time spent on the list even come into effect. At that point, there are still many different factors to look into, such as if the top match on the list is available to get to the hospital in the set amount of time, have they been sick recently or in the hospital?, is their information up to date? Then the person has to go to the center, get an even more extensive series of tests done than have ever been done before to make sure everything will work with the information from the available kidney. If not, it goes to the backup person, who has to have all these things done, and so on. All of these progressive tests have to be done in a very limited time frame as a kidney for transplant is only able to be used within a very short span of a few hours.

It's not an easy process at all, but the people at the transplant center definitely know what they're doing and although it may feel more comfortable to know that you're a certain number on a list, it certainly doesn't work that easily. The person we talked to today explained this in several different ways and I probably just explained it in a pretty confusing way, but it's a lot to take in at one time. I'm really glad we did decide to stop into the transplant center today, as even though we don't really know anything more than we did before going in about the time I have to wait, I feel much better about the whole process and the donor idea.