Anytime the Baldwins post a prayer request on Facebook, everyone automatically assumes it's Dad. (With good reason. He's in the hospital so much that last year at school, a student told me he knows where I live because I live in his neighborhood in the house with all the ambulances.) Anyways, Dad asked for prayers last week for a prayer request that was for me. We've kind of shared a little bit, but I figured I'd dust off my blogging skills and tell y'all a little more about what's going on.
We have a very thorough doctor. If he sees something suspicious, he's going to dig and dig until he figures out why the suspicious thing is happening. Because of my family medical history, and my health issues, I have to have lab work completed every three months ago he can ready stay on top of potential problems. On September 4, I went in for my quarterly visit. He noticed that my liver enzymes were high. They've been high before. When I lived in Oklahoma, I had to have an ultrasound and was told I had fatty liver. Really common. Well, my doctor here wanted more information. The numbers kind of jumped up and down, and he wanted a clear picture, so he ordered additional blood tests and another ultrasound. This new round of blood tests included tests for hepatitis and for various autoimmune diseases. My half day off work became a full day as I went where I needed to go to take career of the extra tests. His nurse called me Friday night to tell me there was an abnormality in my mitochondrial results, and I needed to schedule an appointment with a gastroenterologist. (Side note, she should have said antimitochondrial results, because googling mitochondrial diseases was real scary, and made for a very long weekend of wondering and worrying.) ((And yes, I know you shouldn't google medical conditions, but literally all the nurse told me was the aforementioned blood results and I had to know SOMETHING!!))
Anyways, I saw the GI specialist yesterday (9/10). I left feeling still kind of worried, but so much better than I did over the weekend. He gave me some good information, a probable diagnosis, and a promising prognosis.
I'll be honest. I don't know much about autoimmune diseases. I know they mean a person's immune system is attacking their body. I know I can list 5 of them of the top of my head (lupus, type 1 diabetes, crohn's, multiple sclerosis, rheumatoid arthritis). I could maybe come up with one or two more if I was really pressed to think about it. But seriously, that's as far as my knowledge went.
I didn't know there are over 100 different autoimmune diseases, and I didn't know that some of them are pretty rare. Yesterday, I was suddenly very interested in finding out all about autoimmune diseases when the doctor told me he thinks I have Primary Biliary Cholangitis. It's one of the relatively rare ones--1 in 4000. 65 in 100,000 women. 90% of patients with PBC are women. There is no apparent cause. It had not been linked specifically to any hereditary causes (although it is suspected as it does seem to show up in multiple family members). It generally appears between the ages of 35-65 (I'm an overachiever).
What is it? It's an autoimmune disease that affects the liver. The antimitochondrial antibodies are attacking the cells and organs in the body. In this case, they are causing inflammation and scarring in the liver, which in turn causes damage to the bile ducts. When the ducts are damaged, thea liver backs up which eventually leads to cirrhosis.
In fact, it was formerly called primary biliary cirrhosis, and frankly, that's just the scary icing on top of the frightening diagnosis cupcake. Because what I know of cirrhosis is definitely not good. I know cirrhosis is an end-stage disease. I know that it has several causes, but let's be real, it's not the cause that's so terrifying it's the effect. It brings to mind words like transplant and organ failure. (I promise I'm not going to be Negative Nellie this whole post, just getting it all out there.)
So, what does that mean for me? While he pretty sure it's PBC, the gastroenterologist saw some inconsistencies in my lab work, so he will not give a 100% certain diagnosis...yet. First, I have to have a liver biopsy. (Think giant needle going in and pulling pieces of me out.) If the biopsy confirms the diagnosis, we start a treatment plan. PBC isn't curable, BUT it is very treatable with medication. In fact, the medications have advanced so much in recent years that many patients with PBC never reach the cirrhosis stage of the disease. And there earlier you catch it as start treatment, the better the prognosis. There are some symptoms of the PBC that are present. I don't generally feel bad, they are more just annoying. I mean, who knew itching could be a result of liver disease. Seriously, you can't imagine how itchy I get. I thought I was having allergic reactions to laundry detergent or fabric softener. Doctors (and some family nurses) have asked if I'm vomiting. The stomach issues are there, just not in the form of vomiting. I think I'll just leave it at that. They also say fatigue is part of this, but I've been tired my whole life, so who knows if that's actually a result of this potential PBC. (Plus, here I am, blogging at midnight.) Haha!!
The last 9 days have been crazy and stressful and a roller coaster of thoughts and emotions. I'm waiting on a call from the hospital to schedule my biopsy, then I will see the gastroenterologist again in about a month to follow up on the biopsy and get a treatment plan.
Thank you to those who have been praying and we welcome the prayers of anyone hearing about this for the first time.
Also, if you wanna know how I'm doing...
Right now, I'm more upset that all these appointments are taking me out of the good attendance drawing for great free stuff at work than I am about the reason for all the appointments. I know God has got his part under control no matter the diagnosis, but I really wanted that laptop. My feelings may be different though, when I'm facing the procedure with the giant needle. That'll be my first time in the hospital as a patient since I was born. Plus, I hate needles. (Insert full-body shudder, here.)
