Liver Transplant?

At this point, I was losing hope we will ever be diagnosed. So I ask Dr. K what his prognosis would be. He basically said, cross your fingers we figure this out or it just goes away because if her liver stays the way it is, she will need a transplant...

A TRANSPLANT- a word a parent never wants to hear.

So of course I was locked and loaded with questions about this.

When?: Unknown, just whenever her liver isn't functioning well enough anymore

How?: Better to use deceased liver; however live donors are accepted

Can I be a donor?: When the time comes, anyone can be tested as a possible donor 

Basically, if we don't figure out why her liver is the way it is and stop it, she will need a transplant. It could happen this year, it could happen in 5 years, it could happen in 20 years, no one knows. Like I said, fatty liver disease usually doesn't show symptoms for 20+ years; however Areli already is so she is 20 years ahead of the game so how much longer does she have? we don't know. 

I try to hold on to hope it will just go away on its own, but given the fact even when her jaundice is low, her liver enzymes STAY very consistently elevated doesn't really suggest it will. But the thought of watching her get sick enough until she is in end-stage liver failure, just so we can be put on a list for a transplant is unbearable. Something about waiting for her to deteriorate before we make her healthy seems like a sick joke.

So, before we give up hope, Dr. K suggested we do a specialized MRI of her liver. For this, Areli needed to be sedated and spend a day in the hospital so she could come off anesthesia.

 

Areli did great and we were allowed to go home a little earlier than expected!! We returned a few days later to Dr. K for the results and even with my hopes dwindling, I just KNEW that something would come from this test... My heart was once again broken when the results showed nothing we already knew (fat in the liver). 

Dr. K and the doctors at the Metabolic Clinic are constantly consulting with colleagues about Areli and each found more tests they wanted, so two weeks after her MRI we were back to the hospital for blood work. It was the worst blood draw experience we have ever had!! They needed so much blood they had to calculate exactly how much they could take because they were at the cusp of taking too much. She had to be poked in both arms because the first arm ran out of blood. All together they took TEN vials of blood. My poor baby was almost bone dry and she has never cried that hard out of any of her procedures. 

Not all of the results are back yet, but the ones that are, once again, show nothing more than what we already know, that she has liver disease... I am beginning to wonder if putting her through all of this is the right choice....   

Thank you for reading about Areli, please share so we can get our story out to help find answers.

Love Mama Linnea