Some of the Puzzle Pieces

When I was in the hospital, all the doctors, nurses, etc. would use all their medical jargon and at first, I wasn't even with it enough to begin to understand what they were saying or why they were concerned. After I was discharged and was home, my mom and I went through every single lab result and looked at every test they did to try to understand everything. 

Though I can't say that I understand everything they are saying now, I feel like I know a little about the acronyms and numbers that are concerning. I'm taking this straight from Google to help put things into perspective. 

• Alanine transaminase (ALT). ALT is an enzyme found in the liver that helps convert proteins into energy for the liver cells. When the liver is damaged, ALT is released into the bloodstream and levels increase.
• Aspartate transaminase (AST). AST is an enzyme that helps metabolize amino acids. Like ALT, AST is normally present in blood at low levels. An increase in AST levels may indicate liver damage, disease or muscle damage.
• Alkaline phosphatase (ALP). ALP is an enzyme found in the liver and bone and is important for breaking down proteins. Higher-than-normal levels of ALP may indicate liver damage or disease, such as a blocked bile duct, or certain bone diseases.
• Antimitochondrial Antibody (AMA): Anti-mitochondrial antibodies. The AMA test identifies elevated levels of these antibodies in your blood. The test is most often used to detect an autoimmune condition known as primary biliary cholangitis (PBC), previously known as primary biliary cirrhosis. PBC is caused by an immune system attack on the small bile ducts within the liver. Damaged bile ducts cause scarring, which can lead to liver failure. This condition also brings an increased risk of liver cancer.

So, long story short, my ALT, AST, and ALP levels are very, very high - along with other things like my bilirubin, proteins, and other things that all point to the liver failing. To put things into perspective, here are the normal ranges:

ALT: 5 - 60 U/L

AST: 16-40 U/L

ALP: 38 - 126 U/L

Feb 28th (My ER visit where they initially told me they needed to take out my gallbladder, then they switched to the liver and mentioned "high" liver enzymes and said I should "check-in with PCP about elevated levels". I was given a prescription for an antibiotic to treat a UTI (that I didn't have) and was quickly discharged. Look at my not high, but ASTRONAUMICALLY high levels! The hepatologists in UT said they had never seen levels that high. And.... they sent me home! 

ALT: 912, AST: 1,068, ALP: 389

March 12th (When I was admitted to St. Luke's) 

ALT: 547, AST: 643, ALP: 266

April 10th (My first blood draw with my new PCP here in Nampa)

ALT: 288, AST: 347, ALP: 277

My levels definitely went down after I started to receive treatment, but the fact that they are still up and way out of normal range speaks for itself. I've had my blood drawn once a week in May trying to get all the confusing tests done that the doctors in UT want to check on everything and one of those tests was checking on my AMA levels. They are also high, so it suggests that my liver damage is caused by some type of biliary problem whether it be from PBC or an autoimmune issue. (Primary biliary cirrhosis (PBC) is a progressive disease of the liver caused by a buildup of bile within the liver (cholestasis) that results in damage to the small bile ducts that drain bile from the liver. Over time, this pressure build-up destroys the bile ducts leading to liver cell damage.)

We are still waiting on the PBC test they drew blood for back on March 20th - the day I was discharged. Without that test, we really don't know what is causing the biliary issue. How the Celiac ties into all of this you ask... Good question. Usually, autoimmune diseases come in pairs they say.. for me maybe it's Celiac and PBC. Who knows.

I did get a chance to talk to Dr. Rodriguez who is the hepatologist in UT today and basically, he said that he doesn't want to make any diagnostic decisions until we get that PBC test back but he suspects I will be put on a medication called Ursodiol. (It is used to dissolve and prevent cholesterol gallstones and to treat primary biliary cirrhosis, a disease of the liver. Ursodiol blocks the enzyme in the liver that produces cholesterol and thereby decreases the production of cholesterol by the liver and the amount of cholesterol in bile.)

I guess I wanted to update everyone on my "internal" status, because if you see me in pictures or even in person, people keep saying, "You look so much better!" and I usually reply with, "I feel better." and was even starting to wonder if I even need my medications still. Well, I got a nice litter reminder that yes, unfortunately, just because I look and feel better on the outside does not mean I am healed. I am far from it. 

Thank you for all the prayers and donations and for checking in. Everything is still very much needed. I have many doctors appointments, a lot of medications, bills, and could still use a lot of prayers. 

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