The results came last night.
Most of this I am going to put on her page. But you all get the news first.
our team has been emailing back and forth all week. Discussing and calling and discussing some more.
First, the scope looked beautiful. No varices.
From wiki -> Esophageal varices are extremely dilated sub-mucosal veins in the esophagus. They are most often a consequence of portal hypertension, such as may be seen with cirrhosis or esophageal cancer; patients with esophageal varices have a strong tendency to develop bleeding. This was a HUGE fear, as the portal vein had been blocked in the past - OK not blocked. Last time it was a narrowing at the spot where they attached my portal vein to Natalie's portal vein. And that narrowing closed. (Dr. Superina was good enough to remind me that my memory had failed.
) Anywho, given that it's been blocked before and that this time it kind of came out of no where, all were worried that she was a candidate for a bleed.
So this, for now, gives us a sigh of relief.
The biopsy showed scaring. This means liver damage. This could have been caused by the blocked portal vein. It could have been caused by the damage sustained by her bile duct issues (where she had the tubey in for over 2 years), it could have been caused by the hepatic artery clotting within the first few days following transplant.
What it did show though was signs of Alpha-1
. Antitrypsin Deficiency is a condition that is passed from parents to their children through their genes. This condition may result in serious lung and/or liver disease at various ages in life. Ummm... OK she got the liver from me.
We thought that we'd ruled out Alpha-1 in Natalie's first 3 months of life. What does THIS mean?
Natalie and I have to be re-tested. Both a simple blood test, for which the results will be back in a matter of hours, and a genetic test that could take weeks to get the results.
So for now we know this.
Her spleen is BIG - splenomegaly for those of you that need a label. No contact sports. (Ballet and swimming and golf lessons this summer are okie dokie artichokie -
her new favorite phrase )
She has mild Portal hypertension (blood pressure increase because of the lack of flow in the portal vein)
She has Portal vein thrombosis - fancy word for blockage.
Because the portal vein is narrowed or blocked, pressure in the portal vein increases. This increased pressure causes the spleen to enlarge (splenomegaly).
Her platelets are starting to drop off - another label = Thrombocytopenia (lack of clotting, fear of bleeding) because of the spleen harboring too many platelets, causing a decrease in the number of platelets in circulation. But her white blood cell count is OK. Not great. Just OK. And her neutrophil count (these are white blood cells that help fight bacteria) is adequate - as this and the white blood cell counts drop the more vulnerable you are to infectious diseases.
We know that the team decided she is not a candidate for the Rex Shunt given the survival rate for living donor recipiants - 1 in 4. She is however a candidate for the Distal splenorenal shunt (say that 3 times fast!).
for now we wait. We wait and monitor her via scopes and ultrasounds and CT scans. And wait. And pray.
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