Benson and Claire were born with a rare genetic disease in which their liver produces too much oxalate--called primary hyperoxaluria. Claire's condition has progressed much faster than Benson's. She was on dialysis since she was 3 months old and for much of that time, did dialysis 3 hours a day, 6 days a week. She receive a much needed kidney / liver transplant on December 18, 2009. It is expected Benson will eventually need similar transplants.


Friday, February 18, 2011

up Up UP!

Claire's liver needs to shape "down!" Her numbers have gone nothing but UP since her liver biopsy a few weeks ago. And this past Monday, they doubled again. So they're pretty high now and her cold is much better...still not 100% gone, with just an occasional cough and sneeze. So what is it?! Her biopsy showed absolutely NO signs of rejection or concern. But the blood work numbers certainly show that something is still bothering that liver.

We met with the liver doctor this week and they took a few more samples for some cultures they want to test. She also did a chest x-ray today to make sure her lungs are clear (from the cough that's still hanging around) and then we will do blood work again on Monday. Depending on the results of all those things, we may be looking at another liver biopsy if nothing leads us to a reason for the elevated numbers.

She feels fine. Great. Happy! At least her kidney is behaving. Now we just need to get both organs behaving at the same time and we'd be in good shape!!

2 comments:

Terry and Diana said...

We trust that her liver and kidney will get together and get working in unison.

It will be a great day when they join togther to make her life a smoothe sailing experience. But perhaps that is not the way it will be for a period of time. Whatever the time frame.
We are grateful for the gift and joy she is to each of us.

She is such a delight and beautiful child of our heavenly Father and we love her just the way she is.

~adelle said...

Oh rats. I hope they figure something out soon. That picture of Mabel is darling. :) Here's to a week of good news!