Sunday Sharing: Primary Biliary Cirrhosis

Hi, everyone! That's me over there saying good morning and having a cup of coffee with you.

Today is Sunday Sharing! I'm excited! Mainly because I will be educating you today.

So prepare to be enlightened.

Ready?

First of all, did you get your projects linked up to the Pin It Party? If not, head over and get linked! Go here

Here we go.

If you read my two very first posts, (here and here) you know I have an autoimmune disorder. No big, right? Sort of.

I have what is called Primary Biliary Cirrhosis. And, if you are anything like me when you read that word cirrhosis that freaked you out a little. Thank you for freaking out on my behalf!

In January of 2012, I got a phone call from the office of the Gastroenterologist that my GP had sent me to see.  I was 100% certain that my irregular results on my blood work were the result of my poor eating the day of the test and possibly even taking too much acetaminophen (I had recently had a cycle of migraines that were killer). So, I was not worried in the least.  

This phone call pretty much changed my life.

The nurse tells me that they believe that I have something called Primary Biliary Cirrhosis (freaking began here). I would need to have a few more tests which would include a liver biopsy to be certain. And, if the disease progresses quickly, I may need to have a liver transplant to continue living.

Ummm, excuse me?

I'm healthy. I eat fairly well. I exercise.  

I HAVE 3 CHILDREN TO RAISE!

This is my life we are talking about!

I started sobbing and could hardly see where I was going...did I mention I was driving?

After talking to the nurse, I immediately called my husband and told him to hurry back to town and meet me at our church.  I was supposed to be heading to my office, but I called them and told my boss that wasn't happenin'.

Wow. My husband and I were both a wreck when we got there.  I arrived first and cried all over our 26 year old worship leader, then all over our pastor.  

These people are our family, not just friends.  

I couldn't have gone to anyone better. 

I then talked to the nurse on the phone again (she had called to get the biopsy scheduled) and only then learned that I very well could have a normal life span. I may never have complications from the PBC (yeah, that's what us cool peeps call it....PBC).  Thanks for the late info, lady! I thought I wouldn't see my kids graduate from high school or college, or get married! 

I had to wait a few days to get the biopsy done, but it was not bad at all.  They numb you up really well and stick a needle in your right side under your rib cage into your liver to get a sample.  Sounds fun, doesn't it? Then you lay on your right side for about an hour without moving. 

My sisters showed up and our entire church staff. I am loved. That did more for me than any medication ever could.  (Note: I had sworn my sisters to secrecy. I didn't want to worry my mother until I had answers. My dad was not doing well at the time.)

Tests come back and show that I definitely have PBC, but very little liver damage has occurred. I was sent to an awesome liver specialist (Hepatologist) put on the correct amount of medication and sent on my way.  I saw her again this past fall and learned that my newest blood tests have improved so much that she will only see me once a year for now. I am in Early Stage 1 of PBC and show little to no scarring in my liver with normal levels in my blood tests. Yippee!

After the official diagnosis I had at least 3 people ask if I was or had been a heavy drinker. (!) 

PBC is an autoimmune disorder that can affect anyone and is not related at all to the consumption of alcohol. 

Mayo Clinic has a really good explanation of it, but basically, my liver is destroying the bile ducts that are inside the liver. It's as if the liver thinks the bile ducts are a foreign body. That is what causes the scarring. When the bile ducts are destroyed scar tissue is left behind. 

We need those bile ducts! Our liver processes pretty much everything that we put into our bodies, filters it and flushes it out.  If our liver can't function everything will back up into our blood stream. 

If our body can't flush the cholesterol out of our body it backs up and can end up in all sorts of unexpected places. (Not good people!)

Did you know that consumption of alcohol is not even the main cause of cirrhosis? Fatty liver is actually the primary culprit. Over eating, not exercising, obesity. 

PBC also causes osteoporosis, if the bile in the body can't leave the body it causes the bones to become more brittle.  I have had a bone density test and have slight bone loss so I take lots of calcium and exercise. 

This diagnosis definitely changed my life.  I have medication that I take daily and I pray that I can stay in Early Stage 1 for many years. 

It's managed, but I do think about it all the time. Probably daily. It is part of who I am. That and migraines. I sound like a barrel of fun, don't I?

That's a smidgen of my story. There is a lot more to it, and I hope you will stay with me on this bumpy roadtrip through life!