Road Trips

I haven't updated this in quite a long time because I guess I just kept thinking that I would have one final post and I would be done. But, that doesn't seem like it's going to be true. 

After my FibroScan appointment in Salt Lake City back in August, everything kind of took a turn. I was diagnosed with stage 4 liver cirrhosis and sent home to have another CT done. I had that CT done at the Nampa St Luke's in the middle of September and after that the hepatologist at the University of Utah said he wanted another liver biopsy done. So, I had the liver biopsy done under sedation at the University of Utah in October. After the doctor reviewed the CT and liver biopsy, he concluded that there still wasn't a sure diagnosis of what caused my liver disease. On one end, the FibroScan from August said I had cirrhosis, but the new CT and liver biopsy from September/October were inconclusive because there is still acute inflammation. That being said, he asked for a new CT and another FibroScan to be done to see if maybe the results were skewed due to the inflammation present (which can happen and is why they didn't do one in March when I had 2 liters of fluid. So on November 20th, I will be going back to Salt Lake yet again for another appointment.

Based on the phone appointment that I had after my liver biopsy back in October, the hepatologist said that I had definitely less inflammation in my body than I did in March according to the new CT but it's still hard to tell whether my liver disease was caused from acute or chronic hepatitis. I still have high ANA markers in my blood which suggest that there is some kind of autoimmune issue going on but it's hard to say if it's autoimmune hepatitis or not. Based on my PBC test results it is not that type of autoimmune liver issue. I'm not sure what other kinds of autoimmune hepatitis there are but it's not PBC according to those blood tests. Since my ANA results are still high that suggests that I may have some other type of autoimmune disorder as well. From what I've read in many of my Facebook groups that I'm a part of, autoimmune issues usually come in pairs. 

So, what does all of this mean for my liver? From what I can gather with talking to the hepatologist, he is now trying to determine if I do have as advanced of cirrhosis (a chronic issue) as the FibroScan suggested back in August or not. If so, and my current inflammation (an acute issue) is just making it hard to see on the CT and contaminating the biopsy (is that what happens? Idk...), then we will start talking about options like a transplant. If the acute inflammation made the FibroScan results wrong and the CT and biopsy are more accurate, then maybe it's not as far gone as they thought. At that point, they want to figure out what is causing the acute issue. My Celiac disease is well under control, so the ANA markers, as I mentioned before, suggest another auto-immune issue so he would prescribe a trial period of two weeks of steroids to be monitored here at home and see if the ANA markers go down. If they do, then we need to figure out what other auto-immune disorder I have and get that under control. If not, we are back to square one. 

All that being said, where are my prayer warriors? I know this is a lot of info and I'm not a doctor either, so if you want to specifically pray for things, here they are:

• Pray that
• We can determine if my liver issues are from a chronic or acute condition. 
• If it was chronic and my liver does have cirrhosis to the point that a transplant is needed that my doctors are given wisdom as far as the timing/necessity of a new liver and availability. Would we be able to do a living donor or not, etc. 
• If it is acute and I have to start steroids that that doesn't wreak more havoc than it does good on my body. If I do have another auto-immune issue that it is determined quickly so I can get it under control to avoid more liver damage. 

Regardless of what happens at this next appointment, I am really struggling with the now. I have been home for almost 7 months at this point, unable to go to work. (My medication has some very not fun side effects, in case you look at me and think I look totally normal. I do, but you don't see the not fun stuff going on on the inside to get rid of the ammonia and toxins that my liver can't process.) I am doing everything I can to start a business from home and help bring in some money, but we are stuck in a catch 22 that if we bring more money in, we lose our amazing insurance but if we don't bring in more money, we can't pay our bills. I am still waiting on the Social Security Administration to hear about getting disability coverage and I can't work until that goes through. I felt useless for quite a few months, but I'm trying as hard as I can to get my businesses going and hopefully can start bringing money in that way. 

It's a very fine line and we are doing everything we can to cut everything frivolous out of our lives and strictly pay for only the necessities at this point. God is definitely teaching me patience and I'm really being forced to think hard about what we really need and don't need in our lives. At this point, I'm just very, very thankful for the roof over our heads and food to feed the kids. I can starve as long as I know they are warm and fed. 

Thanks again for all the prayers and for thinking about me and our family. I'll update again as soon as I know more after my appointment in SLC on the 20th.