The biopsy and the diagnosis

I know, this sounds like really bad news, right? Maybe you think I shouldn't advertise my health issues? The problem is, when I was told in January that I probably have an autoimmune liver disease (autoimmune hepatitis), I couldn't find many real-life stories about it online. The usual references were helpful, like WebMD, but they were so textbook. I couldn't find anything very descriptive that would tell me what I was going to experience (or possibly experience) as I went through this. So for the next person who searches, here you go.

In October, my doctor discovered high liver enzymes during a blood draw for a routine physical. She did a sonogram of my liver to see if anything looked abnormal, which it didn't. She said, "We'll do a second blood draw to further investigate. Maybe you have hepatitis." I wish she hadn't said that. The next couple of months while I was waiting for my second appointment and the results, I was very stressed out worrying if somehow I had infected my entire family with some form of viral hepatitis. I was trying to remember if I had received a blood transfusion when I delivered Alex (and how could I remember that, since I almost died?) or if there was some other thing that would have caused it. I was extremely stressed out, fearing that even my poor 2-year-old now had a liver disease.

In January when I got the results, the doctor told me that my ANA were high, (1280 when they were supposed to be 80 at the most), and that viral hepatitis was ruled out, and I had an autoimmune disease that is attacking my liver. That was, ironically, a relief. She told me I would have to go to the gastroenterologist.

A couple of weeks later at the gastroenterologist, he told me that I would need to have a biopsy to clearly determine what stage of damage my liver was in and to determine the treatment. He did a sonogram of my liver to check the blood flow, and it all looked good. He also told me that viral hepatitis had not yet been ruled out, so he needed to do more blood work. Great. Enter the stress about my family again.

They wanted to schedule the biopsy right away, but I had to travel for work for a week and to visit my sister while she was in Europe. I had the biopsy on Tuesday, two days ago, and on that day, the doctor confirmed that viral hepatitis was definitively ruled out. However, he wanted to take more blood samples, to my surprise, but I didn't ask why and just acquiesced. I will find out when I return, I'm sure. Once again, knowing that it wasn't viral was a great stress relief.

At the biopsy, the doctor did a sonogram to determine the entry point. He used his fingernails to dig an "X" into my skin (haven't they ever heard of markers?!). Then he numbed it with a local anesthetic. It was all mostly painless. They fit a small tube into your skin first, then use some kind of a tool to grab a piece of your liver. The doctor told me that one in ten times, he needs to take a second sample. Ripping off a piece of your liver is, as it sounds, very, very painful. However, it is also mostly instantaneous. Naturally, he needed a second sample from me, so it was very, very painful twice. It feels like one would expect it to feel: a shockingly sharp pain followed by a stabbing pain that becomes fairly tolerable after about a half hour. It was hard to breathe at first, which was an unpleasant surprise. I got through it.

The other pain that was a surprise to me was the strong pain in my right shoulder, which he explained was a result of snipping the nerve running down my side. It feels very much like the pain I had in both shoulders after my first c-section that results from air collecting in your shoulders, in case anyone knows what that is like. He led me to believe that not everyone gets shoulder pain during a liver biopsy.

All in all, I would say that, while it was very painful, the pain of a liver biopsy is nothing to be afraid of. If you are reading this because you're going to have one soon, try not to worry too much because it will be okay.

They monitor you for a couple of hours afterwards, and I lay on my side for an hour before the doctor told me I could move to my back. They have you do that to help control internal bleeding. He did a sonogram to see if there was any blood, which there wasn't, took some more blood as I had mentioned, and scheduled a follow-up for two weeks from now. He told me that I can't work out for three days, and that I can't lift heavy weights for three days.

As I said, this was two days ago. I am at the morning of the second day. Yesterday, I had David take the kids to school but went into work. I actually thought working would be easier than being at home with the little kids. (I was probably right.) Today I took the kids to school. I was going to drive the twins, but I really don't like driving here, so I walked. That might have been a little bit too much. I still have pain where my liver is. I have a small bruise at the entry site, and you can barely see the cut where he used the scalpel. It's not too bad this second day. Walking up the steps to work yesterday was somewhat difficult, but I took it slowly and did just fine.

... I am a week out from the liver biopsy, and I feel just fine. I think I am all healed, and I am not stressed about the results. I read that 85% of patients respond to the treatment, which is usually a long-term dose, if not a lifetime dose, of steroids. The 15% who don't respond to the treatment will need a liver transplant, but that's too many steps ahead of where I am today for me to be worried about that.

I have a list of questions for my doctor during my follow-up. Mainly they center around managing the symptoms associated with being on a steroid long-term. Weight gain is really not something I need right now. And I looked at pictures of people with "moon face", and it makes me very sad to know that I'm probably heading there. But I'm trying really hard not to get ahead of myself. I haven't even gotten my treatment, yet. Three more days. It has been a long and stressful two weeks.

I look forward to getting answers on Tuesday.

... Answers. I can't believe it. They were all good answers. I was mentally preparing for something very bad. My liver is completely healthy and free of any disease. My ANA levels came down a step. They're still high, so I'm going to go back in 3 months for another check and then, if they're still high, a referral to a rheumatologist. It's not autoimmune hepatitis, and even though I didn't actually get an answer today, that is good news by itself. It has been a very long 5 months going through this. Although it isn't exactly a diagnosis, at least it isn't that.

...It's a month later now. I'm waiting for my doctor to get done with vacation so we can figure this out. One thing I know, God is good. All the time.

And now I can finally publish this post. It was pretty easy to read, but kind of hard to live through. I'm glad that all of this is in the past.