Sep 10, 2014 Latest post:
Sep 15, 2016
Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most.
Emily has been on the liver transplant list for over 6 years. She was born with a liver disease called Biliary Atresia.
For liver transplants you can be on multiple lists. When a liver becomes available the people with highest MELD score get priority to see if the liver is a match. A match is based on the size of the liver and a person blood type. Some people can receive a partial transplant from a living donor. Emily can not have that type of transplant. She needs a whole liver.
When a liver becomes available in that area they call people with high MELD scores to run test to see if there is a match. Last week when we were in hospital her MELD score was a 31. The week before it was 26. Two weeks before that it was a19 Emily MELD score as of 9/9/14 is a 40.
Madison has been transplanting people with 27 to 30. Froedert 30 to 34.
Last year a new law was passed that if your MELD score is over 35 you get priority for all livers that are available in the Midwest so right now any liver that becomes available in the Midwest could come to Emily if it matches her size and blood type.
Her MELD score stays on record for 1 week. So if her MELD score goes down (and it probably will go down at some point) that could affect her placement on list- but for 1 week she is at a 40 which is very high. It is great for a chance to get a transplant but terrible for how it makes you feel.
Most likely she will transplanted at Froedert but it is possible she will go to Madison still.
She is very nervous about having the transplant although she understand she needs one. They tell us if she gets the right liver (healthy one) she will have a normal life expectancy. So that is what we are praying for.