The diagnosis

So what exactly is wrong with me?

When ever you say to people 'subacute liver failure' or 'autoimmune hepatitis' they respond in one of three ways

1 oh I didn't know you were a big drinker? 

2 is it viral? Where did you catch that?

3 isn't it to do with needles? (Delivered with a knowing looking thinking omg she's a druggie!)

Well AIH ain't any of those.

It is an autoimmune illness where my body decided to attack my liver. Maybe it was bored or hungry! Who knows.

Apparently the only warning signs are increased tiredness. Great for someone who has had ME/ CFS / fibromyalgia!!! TATT!!! Tired all the time - that's how I have always described myself. However in retrospect I was sleeping in the car at lunchtime and napping at any given moment.

It's a quick onset - very long and slow recovery illness. One day I was tired and at Ayers Rock. The next day I was jaundiced, tired, confused and I hospital on the Sunshine Coast of Queensland.

It took maybe 10 days for them to decide it might be AIH. My liver function was so bad that I nearly made it to the Australian liver transplant list. They had to exclude everything else. At some point they thought it may have been drug induced (maybe a pain killer that I was on).

The biopsy result were inconclusive so they put me on steroids - a whacking great dose.

Slowly the important liver functions have improved - but even now I have a way to go. I am still very yellow (normal bilirubin is 20, jaundiced is 80. I'm about 250!)

Anyway with a diagnosis of Primary Autoimmune Hepatitis, I am now on a nice diet if drugs 

A slowly decreasing dose of steroids, a maintenance dose of immunosuppressant, a diuretic to counteract the swelling caused by the steroids and an antacid to help my stomach. 

The docs do say that I will probably need to be on a small dose if steroids for life so  as prevent a flare. Flares aren't good as you tend to go back to the beginning.

And of course because I'm Debbie I've got Steroid Induced Diabetes. This means I need insulin. The dose drops as the dose is steroids drop. Hopefully it will go away when I'm in the lowest dose of steroids.

So that's AIH. No booze, no needles and no weird viruses picked up from foreign parts.