Evaluation, Days 2 and 3

I’m back! Sorry to everyone about the delay in updates. I’ve been pretty sick lately. My liver transplant evaluation nearly killed me. Okay, that’s an overstatement; but it did push me past my limits which resulted in extra pain, fatigue and a fever.

Day two of liver evaluation: The worst part of this day was the pulmonary test. Before I even got to the breathing-into-a-tube-hooked-up-to-a-computer part they had to take a “blood gas”. Apparently this can’t be done like a regular blood test. They have to go directly into an artery. I clenched my eyes shut as a needle was jabbed into my wrist and (I think) air was pushed into the artery. I was trying really hard not to scream because I could feel the air traveling up my arm and into my heart and it hurt. A lot. Blood was drawn and then the needle was (painfully) removed. As I held the gauze over my wrist I started to break into a sweat and the room turned upside down.
“I think I might pass out,” I said to the guy who had just done this awful thing to me. “And I think I might throw up, too. Do you have a bucket?”
“A bucket?”
“Or I don’t know. Something I could throw up in!”
“Um, let’s see,” he said, starting to look around. “I don’t think I have a bucket.”
“Or a plastic bag. That would work,” I was holding on tight to the table and eyeing the trashcan cautiously in case I had to make a break for it’s vomit-safe confines.
“Do you have a problem with blood?” the guy asked me.
“No! I don’t have a problem with any of that stuff.”

He got me to come over to a different part of the room suggesting that a change of scenery would do me good. He also suggested that I chat with him to get my mind off things. Was this guy daft? If I opened my mouth more than absolutely necessary I was sure I would barf (Rayne later said I should have let loose all over the guy just to teach him a lesson). Nevertheless, I was forced to answer stupid questions about my life to which I mumbled feverish-sounding responses. Miraculously, I was able to go on with the test after things settled down a bit, but my arm and neck hurt the rest of the day. One thing’s for sure: I fully intend to exercise my patient rights of treatment refusal next time I am faced with a blood gas test.

We talked to my liver doctor last thing and he had all sorts of sad things to say. Like, “You have no vitamins in you,” and “You have pre-osteoporosis which will start breaking your bones in a few years and leave you crippled unless we treat it,” or “You have a slight issue with your heart.” (Don’t worry, it’s not a big deal and won’t get in the way of transplantation.)
As he was examining me he says, “So what do you do when you’re not seeing doctors all day?”
“Um, well, I play with my pet rats a lot,” I replied.
“Rats? You have rats?”
“Yes, I have eighteen.”
“Excuse me,” he said and walked quickly from the room.

Mom and I sort of wondered if he had gone to throw up or something, but he came back minutes later saying he’d just talked to another doctor about it and he wasn’t so sure about this rat thing. Mom and I tried to explain that these were domestic rats with species specific diseases. He didn’t seem to get it. Did this guy go to med school in the jungle or what?
“Do the rats ever bite you?” he asked.
“No.”
“Do they ever scratch you?”
“Well, yes, but only if I’ve forgotten to clip their toenails,” I said.
“Where are the scratches?” he demanded.
“Well I don’t have any right now!” He looked rather disappointed.

Finally, we were able to leave and go to Rayne’s house. After the giving out of presents and admiring of rats Michelle started right in on the hair coloring. We did it all in one night and I showered three times. Katy and Rayne made a delicious dinner of breakfast muffins and hash browns. I even got to try one of Rayne’s famous chocolate chip cookies. Did you know she puts cinnamon in them? It’s really interesting (in a delicious way). Then it was time for the shaving cream and food coloring fun. Click here to see the pictures Rayne took. And here to see her blog post on it.

Katy graciously let me sleep in her room. I got a kick out of her bookshelf since it looked so similar to mine. I kept asking her, “Have you read this? How about this? Oh, yes, I loved that book. Have you seen the movie?” I was going to take a picture of said bookshelf, but I forgot. Muffin the cat came to sleep at the end of my bed during the night.
The next morning I left with purplish hair and laden down with comics and these really cool wire and bead stars Rayne made for me. Once I get them hung on my ceiling I’ll take pictures to show ya’ll.

Day three of liver evaluation: All through my evaluation we continued to see the boy I mentioned in my previous blog, and his family, at every one of our appointments. “Mom, you have to promise me we’ll talk to them today,” I said. At one of our last appointments for the day there they were, the only other people in the waiting room. I walked up boldly and said, “So are you getting an evaluation, too?”
“Yes, we are,” replied the mother.
“I’m getting mine for a liver transplant.”
“So is he.”
“This will be my third transplant,”
“His, too!”

And the conversation went from there. They had come from Denver where the transplant hospital had turned the boy down for a liver. According to them it wasn’t a very good hospital. All too soon my name was called and we didn’t see them again. I’m hoping the social worker I talked to will know who they were and help us get in contact with them. It would be really cool to get to know them some more, especially since the boy is close to my age.

I had to take all of these brain tests for one of my appointments. They said that sometimes with a liver disease something scientific and complicated happens and it can make you feel stupid and drugged. I guess that explains why I feel drugged even when I’m not. I proved this theory right, I think, with some of my answers to their brain test questions because I had not taken so much as a Tylenol that morning.
“Who was our last president?”
“Um…um…I don’t kn-Bill Clinton!”
“What’s this a picture of?”
“Um…a…um…wooden clip?”
“No, it’s a clothes pin.” Doh.
“Connect the dots.”
“1...2...3...5.”
“Wait! What comes after three?”
“Oh. Four.”

The positive side is I have wonderful finger dexterity. When asked to explain I listed off all my hobbies that used my fingers. Playing guitar, knitting, origami, painting, etc.

Also, the surgeon we talked to gave us the go ahead for my ovarian cyst removal surgery! I called my gynecologist right away. I can’t wait to get this done. It will take care of about half my pain. I also learned that one of the medications I’m on is for esophageal varices (bleeding bits in my esophagus) and it lowers my blood pressure, thus making me fatigued. So it explains my extra, extra bad fatigue and mysteriously low blood pressure. Next Wednesday everyone (meaning all the doctor types) will get together and go over all my test results. Then, I get put on the transplant list unless someone comes up with some bright idea that will cure me.

After all that I was so tired I could hardly even sleep. Within a couple hours of getting home I was shivering uncontrollably and running a fever of 101.3. Today isn’t much better since it’s that very special time of the month and Becca has a uterus that bleeds into her intestines and 7 centimeters of bloody, possibly infected, fluid hanging off her ovaries. Sorry to be so graphic, but I’m kinda mad that I’m a female right now.

But I’m glad to be home and my ratties and Velvet are glad, too.