Stage 4 - The Endgame

It's been almost 5 months since I was discharged drom the University of Utah. It was kind of surreal being back there again. They wouldn't let Wade in so I went to my appointment alone. I had something called a FibroScan and blood drawn so the Dr could establish my baseline after being on meds for a few months. The way he described it was my CT and MRI that were taken back in March were hard to tell if I had scarring or if it was just shadowing from all the acute inflammation because my liver was SO angry due to the Hepatitis E that I somehow got. He summarized what we already knew and confirmed that I do not have PBC or autoimmune hepatitis, which is good, no steroids or anything needed. However, that was about all the good news there is. 

A FibroScan measures scarring by measuring the stiffness of your liver. The fibrosis result is measured in kilopascals (kPa) It's normally between 2 and 6 kPa. My FibroScan number was 24.9 kPa. They wanted to wait to do the scan because acute inflammation while I had the Hep E could make the numbers inaccurate. Now that it's been almost 5 months and my numbers are still that high, he confirmed that I have stage 4 cirrhosis. The shadowing was nodules on my liver and scarring. 

So, what does that mean, you ask? It means my liver is toast. He said the medical term is a decompensated liver. The only thing managing my symptoms  (encephalopathy and ascites) is my medication. My liver at this point cannot get better, but it can continue to get worse... So once a year I have to get an upper endoscopy (the same thing I had done in May to check for varices and take an intestinal biopsy to confirm Celiac) to keep an eye on my veins and to make sure my Celiac is managed. If I develop varices, I can bleed out or aspirate blood... At this point, an ongoing, undiagnosed autoimmune disease like Celiac is the only thing besides the Hep E that could have brought on the liver issues.  Oh and because of the stage 4 cirrhosis, I have an increased chance of getting liver cancer so I also have to do a CT every 6 months to check for liver cancer and more nodules.

Now that we know the severity of my liver damage, next we need to know my MELD score. MELD stands for "model for end-stage liver disease." A MELD score is a number that ranges from 6 to 40, based on lab tests. It ranks your degree of sickness, which shows how much you need a liver transplant. The higher the number, the more urgent your case is. My labs from today will tell us that score. 

I need to get a CT as soon as we get back to Idaho to see if we should do another liver biopsy and the Dr wants me to come back to Utah in 3 months for another FibroScan. 

You know... I just don't know what to say. I'm just so dumbfounded. The Dr even said my case has caught the eye of a few of his colleagues because everyone was so confused on what caused the severity of my liver damage, whether it was acute or chronic, and then confirmation that I got Hep E in the United States... it's ALL SO RARE. Lucky me.

I'm just so mad and frustrated that I can't work, I have to take this stupid medication with horrible side effects 3 times a day for the rest of my life (or until I need a transplant), and then if I DO get a transplant, I'll have a huge, disgusting scar all across my body... Google it. I dare you. It's huge. This whole thing just sucks. Rant over. 

Anyway, not at all what I expected would happen today, especially since I have been feeling so good. I guess I was hoping for the best. Not so much.