Finally some better news!!!
My spirits got a substantial lift today during my weekly visit to the liver specialist. Based on the results of my last 4 blood tests, the medication and diet I’ve been following is definitely pushing things in the right direction. And with each step in that direction, the need for a liver transplant in the future is becoming less and less a possibility. 
I will always have this disease (AIH- autoimmune disease), but if things continue as they have been over the next year and eventually stabilize at a reasonable level, then I should be able to manage it’s effects for a very long time.
I don’t want to jump the gun here and say that I’m going to be alright (short or long term) of that it’s going to be an easy road. But I do feel a lot more hopeful that I’m not going to kick the bucket at any moment. OK, the nitty-gritty details of the blood tests and what it means in terms of liver function.
1) First thing, my INR value is still high but dropping. This is the factor that indicates how well my blood clots and is a bit of an sign of how well my body heals from incidental cuts or incisions. When I was admitted to the hospital and before my liver biopsy, my INR was 2.8-3.3 which was a real problem because I could basically bleed out from the incision point of from the liver tissue removal. This is why they had to infuse me with 7 pints of fresh/frozen plasma - to give my INR a boost before they cut me open (the plasma brought my INR down just below 2, not as low as they wanted, but it wasn’t going to get any better in a time frame that fit the circumstances). If I didn’t mention this before, receiving he plasma was a rush! It was like be hopped up on drugs or something. They gave me about 1 pint every 1.5 hours during the night and morning of my scheduled liver biopsy. I had an allergic reaction to pint#5 which was freaky as hell. It started with little yellow itchy dot on my left arm (opposite the IV) at the start of the pint. No biggie, I when back to sleep after they started the transfusion. I woke up towards the end of the pint and OMG! within minutes my entire body (knees to neck) were swollen up, yellow puffiness, and itched beyond belief! I was freaked out beyond belief. About 30 minutes later they stopped the plasma and infused me with some beradryl. 30 minutes later. all was normal again and they gave me another 2 pints of plasma. Freaky eh? Anyway, my INR is now about 1.8, target is 1.3. It’s moving towards that slowly now.
2) Billirubin levels. When I went in, thye were like 300+. When I left the hospital they wer around 200. Now it’s about 180. It is supposed to be 20-ish. So a long way from normalcy, my eyes and face are likely to remain yellow for a month or more. But this doesn’t really have any health effects or indications, except that the liver byproducts are getting metabolized and slowly removed from my system via the bloodstream. Normally the liver takes care of this itself, but .. you know .. it’s fucked up and busy with other stuff right now.
3) Liver enzymes. This one is a bit more complicated, but the doctor straightened me out on it today and it’s improving better than I thought. My liver enzymes (there’s a host of them that relate to a bunch of different liver functions) where in the thousands before I started the medication. The last 4 blood tests indicate that they are now below 500, and dropping by about 50-100 every week or so. Now, the buildup (increase) of high enzyme levels is indicative of ongoing liver tissue damage. So if they are dropping or staying the same, that means that the gobs of Prednisone steroid I am on is doing what it’s supposed too. That is, it is stopping any further damage to my liver. Good news.
4) Liver antibodies. Now these are the good things that the liver is supposed to be producing. News here is not so good. The most of the levels are not changing significantly (increasing) as they would if the liver was returning to better functioning. It’s apparently not easy to tell what actual levels are good or bad - instead the ratio of different antibodies and their relative change is what is used. From this thyme can diagnose the type of liver dysfunction and, if the antibodies are increasing, then tell if the liver is doing it’s job. Right now we don’t have enough info to really say much, but at least the levels aren’t falling as they would be if the liver tissue damage was swiftly getting worse.
5) Abdominal swelling (abscites), lover extremity swelling, and weight. I’m on a heavy dose of 2 diuretics to try and manage this aspect, combined with watching my water+salt intake and eating modest portions of diet food. My feet, ankle, and leg swelling is just as bad as it was at the beginning of my new medicine regiment. The abdominal swelling feels and looks to be worse than it was before the new diuretics. My gut is huge, and appears to hang over my belt much more than it ever did before. I’m also a lot wider just above the waist. I also feel the presence of this huge about of fluid more than before, it’s like a constant dull pressure in my belly. And I can only sleep on my back, as sleeping on my side pulls my stomach uncomfortably and I actually *slosh* around when I turn. Very disturbing feelings, but normal with this condition. These are my perceptions of course, kind of subjective looks in the mirror and feelings that may seem to be worsening only because they are nagging at me more and more. I don’t know. What I do know is that I have lost 20 lbs of weight in a week! That is way above what we should be expecting, the goal was to lose a lb a day. So it all comes down to how much I trust the scale i’m using. It’s the same scale, but they pulled it out of storage last week for me (other didn’t go high enough. lol). Last week, when i got on it I got the feeling that it wasn’t level. It might have even moved (rocked from one footing to another). So I’m going to wait until next weeks visit before I trust what it’s telling me. The results here are too good, and too contrary to my perceptions for me to get excited over them.
Action plan: To continue as we have been until things stabilize. Doctor wants to see how far the Prednisone will go on it’s own before cutting it back and adding the Imuran. We still have to get rid of this abdonimal swelling too - it’s putting enormous pressure on virtually all my bodily functions. The liver (obviously), the digestive system itself, my kidneys and bladder (all the peeing!), my heart (try to pump with elastic bands constricting your pump expansion), and my breathing (lungs). So still taking 2 blood tests a week and getting results faxed to the liver specialist in Montreal. Then of to visit him once a week to discuss the results and make adjustments to the treatment as needed. On that note, I really like this doctor. He’s straight to the point and explains things to me well, and on my level (not like i’m an imbecile. lol). Meetings are brief, and will continue to be as long was thing continue to move in right direction and he’s happy with the pace. My family doctor is keeping an eye on my situation and watching my blood pressure and heart. He’s a cardiologist so a good person for that job. Going to give him copies of blood results and he still wants me to do the ECG and pulmanary xray. Plus, both docs think I should get a flu shot ASAP. So next week will be another full week of blood tests, scans, and doctor visits. Week after should be quieter, good timing for the holidays.
Of course, it’s not happening fast enough for me. lol. But I accept that I cannot dictate the timetable here as I would need to do in everything else because i’m an impatient control freak. I still feel bad and depressed a lot and I can’t seem to excape that for long. My daily routine of wellness, activity, feelings and behaviour is still far from normal … and even farther still from being able to cope with all my others problems (financial and very very late journal articles writing), seek and obtain work, etc. Here’s my day: I wake up early (6:15 to 6:45 ish), and help get the kids ready for school (breakfast+lunch ready if my sister didn’t have time to do it). Then I send the kids off to the bus and begin my routine. I have a bit more breakfast and take all my pills (5!). Clean up the downstairs and do some laundry. Then I spend some time on the computer, emails, chatting with Mom, surfing, goofing around trying to manage my hobby of competitive video games. [That last one seems so stupid right now, I do a lot of work to keep that up, but only really get to *play* the games a couple hours a week. lol. I'm gonna cut back on that.] Then I’m off to the upstairs to make lunch and clean up the dishes at the same time. Back down to my cave to eat lunch and watch some recorded TV shows. Then I’m pretty much finished. Tired and weak from moving around, and feet painfully swollen. Ideally I lay down and get some rest before the kids return home. Then I try to help them with their homework and prompt them to clean their rooms, etc. Most of that is done while I’m in bed or sitting with my legs up. Sad thing is that I’m not in good spirits at this point. Tired, headache, sore feet, really irritable from the steroids and frustration of my life. Takes a toll on those around me and makes me angry/sad at the same time. 
But there’s not really a way to get around it, I am sick and I NEED to do these chores before being able to rest. And helping out with the kids is the only way I can tell myself that i’m helping out in the household. At least with them taking lunches nd coming home from school (instead of day care), I’m contributing about 400$ towards things. This hasn’t been an issue before because I was getting unemployment and using my savings. But that’s all gone now. All I’m going ot have is minimal support from welfare (which is about 1/4 of my current income, and 1/8 or my normal income. It’s going to be a struggle to survive on that, and still keep some things paid. I know i’m going to have to default on all my credit cards after xmas time - no way around that. I hope to have enough to continue paying my car payment, car insurance, student loan, and portion of rent/bills. Going to have to rely on my sister for virtually all my food, gas, and other small expenses. I think she knows this already, but I’ve still got to spell that out to make sure she prepares herself for it financially (she spends way too much on useless wasteful things right now - she’s going to have to stop that if she wants me to stay alive! Hope she takes that seriously, it’s no joke.
