Sunday, February 24, 2013

On the Road to Transplant?

We went to Ottawa to meet with the hepathologist at CHEO on Thursday.  One word to sum it up: wow.  What an amazing doctor, what an amazing liver team with the dietician and the contact nurse.  We feel so well taken care of, once again.  Those who complain about the health system in Ontario must not need it as fast as they think they need it.  The girls are really sick and we feel we are getting the care they need in a very good time frame.

We sat with the hepathologist before she examined the girls and the biggest issue is the itchiness (caused by the bile acids), which is the most annoying symptom of Alagille syndrome.  No word of a lie, the degree of itchiness seems to be going up by the day.  The doctor examined the girls and the first thing she noticed is their spider veins on their abdomen, a sign of cirrhosis.  Also, the girls' livers are very big and hard, and so are their spleens.  She is worried about internal bleeding and wants to make sure the girls are placed on the transplant list earlier than later.  In other words, she wants to make sure they are on the list before it becomes an emergency.  Blood tests were done on Phuoc.  They tried on Binh but were not able to draw any blood.  We received a phone call on Friday with Phuoc's preliminary results showing high levels of AST, ALT, Bilirubin and Conjugated Bilirubin.  Binh will get another shot at blood tests tomorrow Monday when we see our pediatrician here in Kingston.  The doctor also wants a scope done as soon as possible, here in Kingston or at our next visit in Ottawa.

Once we have all of our numbers and data, it looks like we would then be referred to the liver transplant assessment team at Sick Kids in Toronto.  The assessment takes 3 days of multiple testings and you end up with a score to place you on the list.  If everything stays the same, no complication, it could take 2 years to get an organ.  If things get worse and the girls end up in the hospital, their score changes and they go up higher on the priority list.  Anyway, this is the way we understood it works.

For sure, a liver transplant will not cure Alagille in the girls.  Alagille is there to stay.  However, we can hope that with a new and healthy liver, they would do better, particularly with absorption of nutrients.  With a transplant starts a whole new game, the rejection issue.

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