Well we are sitting here in the clinic at Primary Childrens hospital today. This is the day when we get to see the transplant people….that we know. as of 1030, we have seen the coordinator and signed a bunch of papers to get ready for transplant, the child life specialist who just chats and tries to figure out how to get the kids more comfortable in the hospital.

Then we saw the doctor. We have been seeing Dr. Sherbotie since Amelia first got sick 13 years ago. He is still puzzling about Amelia. There is a lot of unknowns about this new transplant and what will happen with it, and they kind of have to wait and see. He is talking about situations where they may have to remove her current transplant, or go on dialysis for a while, and then what immunosuppression that she will be on. He was also talking about consulting with Dr. Afify, the oncologist, to make sure that the immune suppression Amelia will be on works for her new transplant and will help avoid getting PTLD again. He is very optimistic about this second transplant.

Everyone keeps talking about finding Amelia a live donor for this kidney. That is hard for me to ask anyone to donate when they won’t work me up for it. Amelia can have both of my kidneys today if they would do it, but they will not. For now.

So now we have to ask if anyone would be willing to get worked up for a kidney donation. It is interesting what they do now, people can come in and get worked up for Amelia, but if they don’t match then they can still donate to someone else and things get matched up for Amelia. This is similar to what Carol did back for the first transplant, where she donated to Amelia. Carol’s uncle, that she didn’t match, got another persons donation soon afterwards. Now they can do chains of people where there may be 4 or 5 in a line between people. So now I have to post here, if anyone wants to get worked up to be a donor, go to the University of Utah’s page: https://healthcare.utah.edu/transplant/living-donor/

Now we are waiting for the rest of the team to come in. We are waiting for the dietitian, pharmacist and social worker. More to come about those.

Dietician: not much is going to change! She was glad that we have been doing good with eating and drinking for the past 11 years. Amelia will do just fine after transplant.

Next up was the social worker. She needed to know how we were going to handle another transplant and what Amelia could use for support. According to Amelia, it comes down to parents, siblings, and the cat. In reverse order.

Anyway, that was our day at clinic. We are hoping to get her on the transplant list soon, hopefully before she has to do dialysis again.

Still coming to you live, 30 days into the new Kidney Journey

-Justin