And now we're back

Something new and even positive to report:

My regularly scheduled appetite has been back all day. I ate normal amounts of normal food, just like a normal person. My goodness. In fact, I ate more than usual (thank you, Indian takeout and your powers of temptation).

Which is all for the best, I imagine, since I've been eating significantly less the past few weeks and had to keep a food journal just to make sure I got to the bare minimum amount of calories I need in a day.

Let's hope my appetite is here to stay? At least in a normal capacity?

I am still hoping I don't start to have crazy appetite surges now, though. That does seem to be the most widely-reported and most-hated side effect of prednisone. But not being able to eat is not any better. I was starting to worry I was doing myself further damage or that I was deteriorating somehow, in spite of the drugs to stop my immune system attacking my liver.

Increased energy and an elevated heartrate have been other omnipresent side effects, much like the frequent bouts of insomnia and mania. I'm a little concerned about this as well. Will ask my doctor about what it might mean when I see him next week.

This is my last day on 40 mg, incidentally. Starting tomorrow I am down to 30 mg. Hooray for tapering.

OW.

Pretty much sums up my day. Somehow or other the 40 mg of prednisone gave me insomnia all night. I managed to nod off for a few hours between 8 and 10:30 a.m. this morning. It was miserable. I wanted to sleep and rest my eyes. But I just laid there in the dark for hours completely unable to lose consciousness. Attempts to make up my sleep deficit in the daytime and afternoon were no good either. I could lie down with my eyes closed and doze, but that was all.

Still very little appetite or interest in eating. Still the feeling of fullness. Now accompanied by a markedly enlarged spleen and some associated pain. It feels like a stomachache, only not in my stomach, and it doesn't go away. It's worse when I move.

I was trying to relax and de-stress myself with yoga and even that was hard. My poor sore abdomen was not having some of the stretching and twisting.

I am feeling a little manic again. But the mood boost is welcome, even if it's artificial. Artificiality is probably all I can hope for right now, especially with people calling me and introducing themselves as my transplant coordinator, and telling me my MELD (Model for End-Stage Liver Disease) score, which measures the probability of my survival for the next three months. (UM.)

(Mine is 19, if you're curious, on a scale of 6 to 40. The higher the score, the closer you are to liver failure. The average score for a patient undergoing a transplant is 20.)

How Can You Tell?

Hmm. On the new dose of 40 mg today and feeling very blue. Lethargic, mopey, the works.

I have no idea if this is a prednisone side effect, or a completely normal and natural reaction to dealing with autoimmune hepatitis/cirrhosis and the facts of my diagnosis.

Exercise did wonders for my mood all weekend. I was all over the available Hulu yoga and cardio channels for a fix of stress relief plus endorphins. But today I haven't been able to scrape together the motivation. Yet? I know I should, and if I started moving I'd probably marvel at the insta-mood boost and wonder why I hadn't gotten over myself sooner.

Is it better or worse to be self-pitying when your reasons for self-pity are, erm, reasonably legitimate?

Diet adjustments

I've been tracking what I'm eating. The full/uncomfortable feeling has continued. Then I made a conscious effort to up my protein intake.

It's been a struggle to eat much of anything this week. Everything seems to make me feel far too full. Even a garden salad. And there are certain things I've been afraid to eat for fear of making it all worse. Namely, when liver disease patients eat more protein than their livers can handle, toxins like ammonia build up in the bloodstream and go (you guessed it) straight to the brain. Hepatic encephalopathy. It's none too good.

So I've been eating probably less protein than usual this past week. And I don't often get enough as it is. My protein sources are based on what's relatively cheap and what I feel like making. I try to vary it up-- some nuts here, some cheese, some yogurt, beans, an egg now and then, whatever...chicken or shellfish if I'm feeling fancy. But typically I'd say I don't eat more than 40 - 50 g a day, which is low. And often it's even less than that, unless I'm trying.

This afternoon, I decided to aim for a higher protein intake. Something at least in my recommended range.

One vaguely disgusting protein shake later, I actually feel significantly better. And possibly even HUNGRY. No way.

I'm keeping tabs on this protein situation from now on.

I won't put pen to paper, it's a mania

Yup. Manic again. How many more days at this dosage?

No visible weight gain, puffiness or swelling. I don't have a scale so I don't know for sure.

Yesterday I had to force myself to eat periodically. I was not the slightest bit hungry, following breakfast, for the remainder of the day.

There are so many complications and possible interactions that it's hard to make sense of what's going on. What's the prednisone, what's the liver disease, what's just normal fluctuations in energy and appetite?

Maybe I need to assume nothing I'm experiencing right now can be explained away as "normal."

Loss of appetite is a symptom of liver disease, especially near the end. Though I will guess that it isn't too far gone if I'm not experiencing nausea or vomiting. Is that why I'm not hungry?

It can't be that the prednisone isn't kicking in. Because it is, oh it is. Definitely manic and insomniac here. Last week I was taking 2- or 3- hour afternoon naps in addition to a full night's rest: fatigue seems to be the number-one symptom of liver disease.

Within a few days of starting prednisone I feel hopped up all day, stay up half the night, and subsist perfectly well on 5 hours of sleep.

With the loss of appetite has come an utter loss of food cravings. I never seem to want anything. I've always had an insatiable sweet tooth. Now candy and sugar are things I can take or leave. I have no desire to eat. And I love food.

I feel full all the time. Almost uncomfortably so. Usually this would have something to do with swelling, fluid retention, and bloating-- side effects of both prednisone and liver disease. But when I scrutinize myself in the mirror I don't see bloat, at least nothing obvious. My abdomen feels soft, not taut or stretched. I don't know what to make of that.

I'm pretty certain I can feel my spleen. It's enlarged and tender and probably has been for a long time, thanks to complications with my liver. Sometimes I think I can feel my liver at the edges of my ribcage, too.

I have the sensation that my heart is pounding. I feel as if I'm trembling from within. When I put my hand to my chest, my heart rate is steady. Normal. I think. I don't know what to make of that either.

Slightly grandiose thoughts come with the mania, a little. I feel chattier, bolder. I'd love to go on a job interview right now because I'd damn well knock someone's socks off. Maybe literally.

Beginning stages of research

Researching prednisone, autoimmune hepatitis, and cirrhosis seems to be the best way for me to cope so far. I've always had a need to understand and analyze myself and what's going on with me. I never thought I'd have to deal with something like this. Obviously? But them's the breaks.

Still trying to sort through information on the progression of autoimmune hepatitis and how it ever got as far as cirrhosis. It's not even that clear to me how far gone the liver has to be for a doctor to diagnose cirrhosis, other than something like, "pretty far" or "past the possibility for regeneration," whatever that means.

What percentage are we talking here? Exactly how much of my liver is left to me? I want to know. And I DON'T.

I learned a little more from my research into prednisone. I found out, for example, exactly what kind of dosage I'm currently on: a "high" dose, just slightly more than 1 mg of prednisone per kilogram of body weight.

I'm on a taper, so I get to lower my dosage every few weeks until I'm down to a "moderate" 20 mg-- though I'm not sure why I'm tapering?-- most people with autoimmune conditions who take prednisone seem to need to stay at a certain level, usually moderate to high, for a long time. At least a year. Is it because my liver is too far gone? Maybe the higher dose isn't able able to help restore function, and all it can do is stop my immune system from attacking my liver any further...which might not need as high a dose? I haven't found any real answers yet.

I know this initial treatment is temporary until whenever I can get a transplant. And I haven't so much as been put on the waiting list yet. My doctor seemed clear on the point that my days with prednisone will be far from over. I'll need it to prevent rejection of the new liver, probably for several months to a year. And perhaps afterwards, to prevent my immune system from attacking again.

In sum: Not thrilled. Not thrilled at all.

I'm a Maniac, Maniac

Oh wow. Wow.

Day 4 of prednisone and the mania has hit me HARD. 7:42 and I literally leapt out of bed. I do feel like I could do anything.

Oh the rush of thoughts. Oh wow.

Yet the real me is back here somewhere, detached, watching and worrying.

If I had a pogo stick I'd find it and pogo.

The funny/weird thing is that this hits me before I've even had today's dose. Interesting. Interesting.

Already kind of excited about dropping down the dosage next week, to be honest. This is...well, we'll see how today goes, but I'm not sure I like feeling so unrecognizable and so fast and so unmyself.

Though I wasn't exactly myself before this, was I, because my liver is on its last legs, last...lobe? Last something. Fatigue might seem like a more normal state for me, especially by now, but there's no reason it should be preferable...is there?