Well we have now been on the waitlist since 9/26/2023. That means we are starting our 5th month of waiting. We were originally told that the wait time for a kidney for a pediatric patient is anywhere from a few weeks to a few months usually. Xander had to throw another wrench in the wheel though by only being able to except a type O kidney.

This week we did his latest blood draw. We have to do these every 28 days. One vial is sent back to OHSU, so they have fresh blood to test with any potential donor kidneys, and about 6 other vials are to get his current kidney numbers so we can see how he is doing.

There are 5 stages of Chronic Kidney Disease.

Stage 1-Normal Function-GFR > 90

Stage 2-Mild CKD-GFR 60-89

Stage 3-Moderate CKD-GFR 30-59

Stage 4-Severe CKD-GFR 15-29

Stage 5-End Stage CKD or Kidney Failure-GFR <15

Xander has been in the 17-18 range, Stage 4, for over a year now. This last blood draw showed that he had a pretty large drop in the last month to 16.2. Once he enters Stage 5, <15, we will start monitoring him for the need of dialysis. We do not want him on dialysis, as the transplant process will be smoother if we can get a kidney before it is needed.