Autoimmune Hepatitis

As we leave Salt Lake City for the third time in just as many months, I always have a million thoughts going through my head. 

If you read my last blog, after the last CT and biopsy showed inconsistent results yet again as to the state of my liver, the hepatologist asked for another CT and FibroScan. This time for the CT I had to drink oral contrast over an hour and a half and then also had the IV contrast to help give them a more clear image (I guess). 

After that, I got another FibroScan done. There is variable for human error that is factored into the results to help give a more accurate number for the kPA. This is from Google to help explain what the scan and number mean:

 "FibroScan measures scarring by measuring the stiffness of your liver. The fibrosis result is measured in kilopascals (kPa) It's normally between 2 and 6 kPa. The highest possible result is 75 kPa. Many people with liver disease(s) have a result that's higher than the normal range."

Back in August, the variable was only 6% and my kPa was 24.9. Today they were having a hard time getting an unobstructed number (they have to go through the rib cage if they can't get the pulse between the ribs and apparently I have a small space between my ribs), so the variable was at 30% but my kPa was still 22. So, the results were pretty consistent with the findings back in August: that I have extensive cirrhosis - stage 4. 15 kPa is considered cirrhotic and my number has been in the 20s two times now. 

The hepatologist talked to the radiologist who did my CT today and it was coincidentally the same guy who did my CT back in March when I was admitted. He actually remembered my case and remembered being just as dumbfounded as everyone else as to what was going on. So, they both talked. The CTs show a mixture of fibrotic tissue and some ok tissue. The FibroScans show cirrhosis. Lastly, the biopsies both came back fairly normal with slight acute inflammation. 🤔

SO, according to the two great minds, they are pretty sure it's an autoimmune hepatitis. The radiologist said that the CT shows fibrotic tissue on the outside of my liver and the inside is showing tissue that is inflamed and "overcompensating" and trying to repair (aka the "ok" tissue samples that came back in the biopsies). However, it looked about the same as 8 months ago. Unfortunately, since the liver is so huge, the biopsies are getting taken from areas that aren't showing the cirrhosis or that have autoimmune markers. The liver can repair itself but he said it's definitely a "chronic" issue and my liver just can't keep up. The way that the "patterns of the distribution of inflammation" and the fact that I still have ANA markers in my blood after my Celiac is under control is consistent with an autoimmune issue.

They took more blood for labs again today  to make sure the Hep E is totally out of my system and that nothing else is causing the acute inflammation still. Once that is confirmed, he wants to start me on a steroid - prednisone. Since an autoimmune disease is basically your immune system attacking it's own healthy cells, the way to treat it is to suppress your immune system. 

Prednisone is not a good medication to take in the long term because of its array of not great side effects, so after taking it for a few weeks if it showed that it was managing my inflammation, then they would taper that down and switch me to something else. However, these meds would leave me immunocompromised for the rest of my life. 

The next question, as always, is about a transplant. My thought, if I just get a new liver and start over, can't I just be done with all of this?? There is a 20-30% chance that even if I get a new liver that since it's an autoimmune disease it would happen again to the new liver. 

What would happen if I didn't take the steroid? My liver cells would continue to be attacked causing more and more fibrosis, scarring, and lead to liver failure sooner. Not only that, the next stage after stage 4 cirrhosis is cancer. Because of this, I have to get a new CT every 6 months to check for cancerous cells. 

Ugh. What is happening to my life??? 8 months ago I was a happy, healthy woman, working full-time, buying a house... Going in the best direction I thought we could be going with the best mindset considering being a grieving parent with 2 young and rambunctious kids. Now, we struggle to live off of one income, I feel physically nauseated and gross on a good day and emotionally struggle with purpose and self-worth most days with a looming question of what the future holds for my health and ability to take care of my family. 

Now we wait for the results of the labs and potentially starting a treatment. Idk how I even feel about that. I wouldn't say I'm happy about it. I don't even want to Google the side effects of prednisone. Will you and then give me the "nice" version?