They took me to another lab that uses the same machine as the one back home, and drew blood again.

14.6. It is dropping at two points a day. 🙂 🙂 At this rate, I will stop itching by next Friday. Woohoo!

The first set of results can in this morning, and my dad said “no way these are the numbers,” so they ran them again. Three times. And the numbers are? 18. 19. and 20. According to this lab, I dropped 11 or so points in a week… which is relatively unheard of.

And my albumen jumped to 3.6, from 2.8, another jump that has all the doctors stumped and surprised, and me ecstatic. If it continues to drop at this rate, I could be at a 9 by next week. WooHoo!

I’m less itchy, but I’m told I look the same—it’s a shade issue I suppose.

My dad had them run the tests several times, and tomorrow he wants the sample sent to the lab back home, to see what they come up with… see, to test for bilirubin in blood, they have to use a spectrometer test—i.e., shining light through the serum tail of the blood. Mine was so dark orange/yellow that they diluted it to get a better sample. And they were doing that back home as well, but the docs want to make sure all the machines give the same answer before giving me a definitive number.

For now, 19 and dropping. 🙂 That’s what I’m going with. And I’m ecstatic.

We’ll find out tomorrow the definites, but for now… we party. 🙂

We cut my hair yesterday. I know that may not seem like a big deal, but it was to me. I had long hair… not super long, but about the middle of my back—maybe a little less—and I really liked my hair. Considering the circumstances I’m in right now (being yellow, itchy and drugged) I probably shouldn’t be vain and care about my hair. But I am and I do.

It’s not super short, but he took off eleven inches (my mom’s hairdresser came to the house) and now it hangs just below my chin. It doesn’t look terrible—everyone says I look like a pixie… but I don’t want to look like a damn pixie. Ever since I got sick I’ve been having trouble with it… it iched on my back and neck, and I was only washing it every three days or so and it was breaking where I kept pulling it up—another sign of the lack of protein. But still.

Oh and I also ate bacon yesterday… first time in years. The Man is happy. My dad’s forcing all kinds of things down me… I have to eat something every four hours, I have to eat a little bit of pure fat every hour or so, etc., etc. He wants my gallbladder to release CCK, which will help clear my colon and move the bile out of my body. It’s working. I feel better than I did yesterday, and light years better than I did three days ago, so that’s good. We find out Tuesday the bilirubin number. My dad thinks that if he is correct in how he is treating me (the food, flaxseed oil, SAMe and other vitamins), I should be at about a 26… and we might be able to get it down to a 12 by next week. It would be a miracle.

My mom caught me up on all the gossip from church today—the one I haven’t been to in years—and it was highly entertaining. Except that I found out my ex got married… and I saw a picture and she’s cute. I’m not still in love with him, and I’m not jealous or really that upset… but I’m a little cranky that he got married before me, even though I’m not ready to get married just yet. It’s the principle of the damn matter. 🙂 You understand.

Oh and we let the cats out today to get acquainted and when they got back in here, Ellie pooped on the linoleum. Typical.

So basically I want to kill myself. The flights yesterday were agony, especially after we learned that the bili is up to 29.7.

It appears I’m hitting record numbers for this. My dad is looking into a new way of treating jaundice, but it’s a) not really for jaundice (it just cleans my blood… eight hours hooked up to a huge IV pulsing from my neck) and b) is only approved for testing in the US….. so Austria or Toronto is the thought.

Maybe.

Short update. My parents got here last night, so now I’ve an IV in one arm that I have to keep straight. My dad is out getting some needed supplies and my mom is on the phone with the airlines trying to book flights for my cats.

My dad explained last night that there is a very real possibility that I won’t get better for 6-12 months. And the truth of the matter is that I can’t take care of myself at all. So I’m going home.

We leave Tuesday. I’ll keep you all updated. Thanks for the well wishes, etc.

So it did go down .3 this week. I’m trying desperately hard to scream and jump out my window… sadly it’s only the second floor, and it won’t kill me.

The specialist had said it could go down a point a day, but apparently my body said “Fuck it, we like being yellow.”

My parents are coming in tomorrow and my dad’s bringing an IV to hook me up to fluids. My mom wants me to go home with them. The prospect of any form of travel.. especially travel that will take 8 hours.. makes we want to hurl. Last week I was adamantly against it. Last week I also thought the bili was going down.

And the stupid albumen level? The one that said I needed more protein? Dropped another .5. After all that damn chicken I ate, it dropped. (It was supposed to go up .5.)

My desire to live has now dwindled to nil.

So my bilirubin went down… by .freaking3 or so. Apparently last week it was at 24.7, but no one noticed the typo. So maybe it went down by 1.1, but still… that’s nothing.

Everyone has reassured me that the reason the weekend was so bad (holy mother of drugs) was probably because the bili peaked—their guess? Somewhere around 32-34—and now it’s starting it’s decline. I can only hope and pray that it will decline swiftly… and not 1.1 a week. Then I will die.

I was just reminded that my mom’s birthday is in a couple of weeks, so now I must start shopping. Oy.

Yes, my bilirubin’s gone up again and I want to die. I thought I looked yellower… and I knew I was itchier, but I just thought that was because I had changed my meds.

And my mom left today.

I’m going to go cry now. And itch a lot. And then take some medication and hopefully it will knock me out of this fucked up hell I’m in.

Sorry, no good side, no up side, just down sides today.

Well, we went to the specialist yesterday, and if there’s one thing I can say, it’s that specialists make the world better.

First, his office staff was awesome, and when I started crying because I had lost another 10 pounds (OK, but come on people, 25 pounds in three weeks? WTF?), they were very nice and told me they’d seen lots of yellow people come in here and the doctor always made them better. And he is the best—apparently my dad’s best friend’s connections are phenomenal, because my specialist is the head of liver transplants at this clinic and he’s the foremost hepatologist in his field. So nice. 🙂

Anyway, sadly, they still don’t know what is wrong with me. 🙁 He thinks it’s one of two things: either I am severely allergic to the birth control (either the dye or the estrogen) or I have some sort of viral hepatitis. Either way, we may never know what I have or how I got it. People apparently get random viral hepatitis quite a lot, and very often they can never pinpoint what or why.

Fortunately, my ALTs and my ASTs are dropping (liver enzymes).. in other words, my liver is almost out of the woods, so to speak. However, my bilirubin is still quite high. He said that it might be “lagging” behind the others and it should start dropping soon. (ARGH)

So, I have better drugs now… woohoo… but I’m basically confined to home for two weeks until it drops and I stop itching. (The drugs knock me out, and the jaundice makes me really tired anyway.) I’m to go have blood tests every week for four weeks, then go back and see the specialist. Mind you, he gave me all his numbers, including home and email, and I’m to call whenever I want. 🙂 Nice guy.

That’s the news… not much, but hopefully this means I’ll be getting better soon. I’m still very yellow and itchy, but there’s no quick way out of that.

Bilirubin is now at 19.1, I had to honestly tell my mom that no, I am no longer a virgin and now they want to test me for HIV and send me to a liver specialist at a teaching hospital in Boston… if the MRI comes back with nothing.

Kill. me. now.