Alrighty, here's the link to the newspaper article! I hope you all enjoy! Let me know what you think.
http://www.journalstar.com/articles/2009/03/01/news/local/doc49a9edea9cc90501695797.txt
Showing posts with label liver transplant. Show all posts
Showing posts with label liver transplant. Show all posts
Sunday, March 1, 2009
Friday, September 12, 2008
Keeping THEM Happy
So the liver people aren't exactly thrilled with me. I've lost 11% of my body weight in two months, my bone disease is getting worse so I need to start doing more exercises and popping the world's supply in Calcium and vitamin D pills. I also need to stop taking so much pain medication. They're giving me those pain patches instead. Apparently I'm not exactly in fit enough shape for a transplant. When I get home I'm supposed to start drinking up to 5 cans of Boost a day. 5! I usually have 1, maybe 2.
The liver pain and fevers are going to be monitored over the weekend and I can get this drain pulled once it's draining next to nothing (which is what I think it's doing now, but I guess I'm not the expert). So it looks like I'm here for the weekend at least.
Today I get to see physical therapy. Wooo.
Becca
The liver pain and fevers are going to be monitored over the weekend and I can get this drain pulled once it's draining next to nothing (which is what I think it's doing now, but I guess I'm not the expert). So it looks like I'm here for the weekend at least.
Today I get to see physical therapy. Wooo.
Becca
Tuesday, September 2, 2008
Liver Transplant Anecdotes, Part 2
Remember this post? Well, this is me, finally picking it up again.
And do you know what? I totally left out the best 1st transplant anecdote. Here it is:
We went to radiology a lot, as you can imagine. There was a desk there where a nurse/secretary worked checking people in, dispensing contrast, etc. During all the waits she and my mom had gotten to know each other a little.
Sometime after my first transplant she apparently had a very revealing conversation with my mother. I didn't find out about it until later. First of all, you have to know that one, my first liver was only half a liver and two, you are never told who the donor is unless that person's family chooses to come forward. You can however, send them a thank you card through a social worker or someone like that.
At this time this woman confided in my mom telling her that I had half of her ex-husband's liver! How weird is that? This woman had watched over me in radiology I don't know how many times. She was always especially kind to me. I wonder how it felt to watch her ex-husband's liver being destroyed by a disease and causing an 8-year-old girl endless pain...
As for the second transplant:
We were living in Lincoln by this time. My parents had just seperated, I was eleven years old, in the 6th grade and we (my mom, sister and I) were living at my grandmother's.
On the morning of St. Patrick's Day, March 17th, 1999, I woke up with a start at 6:30 AM. Something told me that there had been a change. Something had happened. It was then that I heard my mom speaking on the telephone just up the stairs from where I was sleeping in the basement. No one else was awake and the only reason I could think for her to be on the phone without me hearing it ring was that she had made the phone call. And if she was making them phone call then...
I walked slowly up the stairs and listened to the conversation, but I knew before I even heard my mom's words that a liver had been found for me. My mom hung up the phone and I crouched at the top of the stairs.
"Mom?" I whispered, getting her attention. "The liver is here isn't it?"
She smiled a worried, but happy smile and said, "Yes. Get dressed and get your bag." (Just like if you're pregnant, you have to keep a bag of clothing and other essentials ready while you're on the list so that you can grab it and go. I had worked hard to keep my backpack stocked with art supplies and books.)
We woke up my sister and Gramma and drove out to the airport to Duncan Aviation. There my mom and I boarded a pretty white jet that had red and blue stripes. The inside of the jet was like a small car. There was a seat for the pilot, a passenger seat beside him, and two regular airplane seats in back. Behind the seats was a little stash of chips and sodas which I was told to help myself to. I declined, saying I couldn't eat since I was about to go into surgery. I was too filled with nervous excitement to eat anyway, though I eyed the Cheetos with a bit of longing. I tried to play cards to distract myself, but mostly I looked out the window. We couldn't really talk since the jet was so loud. We had to wear ear plugs.
We arrived in Minnesota an hour later. I don't remember going to the hospital, but I do remember being there and my dad showing up with the same anxious look on his face as my mom. I knew what to expect this time around and was literally bouncing up and down with excitement. I'm pretty sure I had a goofy grin on my face the whole time. I was just so glad to get this new liver. I also wanted to be strong for my parents.
I remember being wheeled into the OR, seeing the Coleman cooler and watching a nurse sort mounds and mounds of clamps and other metal instruments.
"This is like a kitchen!" I remarked. "It looks like that person is sorting the utensils." I wanted to stay awake and watch more of the hustle and bustle going on around me, but all too soon the anesthesia was given to me and I was out.
I woke up probably eight to ten hours later. I couldn't talk for a day or two since I had to stay on a ventilator. I tried to impress everyone by writing my notes of request in cursive or drawing small doodles. The recovery went great and within a week I was back home in Lincoln. What a difference from the first transplant!
This liver was a whole liver and from someone much younger than me. I seem to remember someone slipping me information that my liver had belonged to a four-year-old girl who'd died in a car crash, but I don't know for sure. I do know that this liver served me well up until last about a year ago. Sure, there were the occasional glitches, but that's bound to happen. For the first three years with my new liver I was PSC-free (PSC is my liver disease)! Unfortunately, it penetrated this liver and now, eight and half years later, the disease has taken control. Still, most organ transplants are supposed to last 10-15 years, so I'm proud of this liver for all that it's done for me. He's been strong.
Who knows what this next transplant experience will be like? All I know for sure is when I get that page on my beeper I am going to be one happy camper.
The gift of life is a fabulous one. I would be dead two times over if it weren't for organ donation. The miracle of giving life to one person through another's death is a gift from God. I will never take for granted the gifts that have been allowed me in my two livers. Every day that I'm alive is a miracle because of them. Please, please, if you are not already an organ donor, become one. What reason do you have not to? I and countless others are living proof that your decision to be an organ donor will save lives. And please, please, don't treat your organs badly. Live healthfully because in doing so you are preserving your life and, when it ends, you could be passing that health and vitality down to someone else. Who knows how many more people could have been saved if a person hadn't destroyed their organs with alcohol, drugs, or poor diet?
Even though they probably will never read this, I want to thank the families who made the decisions for their loved one's organs to be donated and gave me life. No amount of thanks can ever cover the gratitude I feel, but I still want to say thank you and God bless you! :)
And do you know what? I totally left out the best 1st transplant anecdote. Here it is:
We went to radiology a lot, as you can imagine. There was a desk there where a nurse/secretary worked checking people in, dispensing contrast, etc. During all the waits she and my mom had gotten to know each other a little.
Sometime after my first transplant she apparently had a very revealing conversation with my mother. I didn't find out about it until later. First of all, you have to know that one, my first liver was only half a liver and two, you are never told who the donor is unless that person's family chooses to come forward. You can however, send them a thank you card through a social worker or someone like that.
At this time this woman confided in my mom telling her that I had half of her ex-husband's liver! How weird is that? This woman had watched over me in radiology I don't know how many times. She was always especially kind to me. I wonder how it felt to watch her ex-husband's liver being destroyed by a disease and causing an 8-year-old girl endless pain...
As for the second transplant:
We were living in Lincoln by this time. My parents had just seperated, I was eleven years old, in the 6th grade and we (my mom, sister and I) were living at my grandmother's.
On the morning of St. Patrick's Day, March 17th, 1999, I woke up with a start at 6:30 AM. Something told me that there had been a change. Something had happened. It was then that I heard my mom speaking on the telephone just up the stairs from where I was sleeping in the basement. No one else was awake and the only reason I could think for her to be on the phone without me hearing it ring was that she had made the phone call. And if she was making them phone call then...
I walked slowly up the stairs and listened to the conversation, but I knew before I even heard my mom's words that a liver had been found for me. My mom hung up the phone and I crouched at the top of the stairs.
"Mom?" I whispered, getting her attention. "The liver is here isn't it?"
She smiled a worried, but happy smile and said, "Yes. Get dressed and get your bag." (Just like if you're pregnant, you have to keep a bag of clothing and other essentials ready while you're on the list so that you can grab it and go. I had worked hard to keep my backpack stocked with art supplies and books.)
We woke up my sister and Gramma and drove out to the airport to Duncan Aviation. There my mom and I boarded a pretty white jet that had red and blue stripes. The inside of the jet was like a small car. There was a seat for the pilot, a passenger seat beside him, and two regular airplane seats in back. Behind the seats was a little stash of chips and sodas which I was told to help myself to. I declined, saying I couldn't eat since I was about to go into surgery. I was too filled with nervous excitement to eat anyway, though I eyed the Cheetos with a bit of longing. I tried to play cards to distract myself, but mostly I looked out the window. We couldn't really talk since the jet was so loud. We had to wear ear plugs.
We arrived in Minnesota an hour later. I don't remember going to the hospital, but I do remember being there and my dad showing up with the same anxious look on his face as my mom. I knew what to expect this time around and was literally bouncing up and down with excitement. I'm pretty sure I had a goofy grin on my face the whole time. I was just so glad to get this new liver. I also wanted to be strong for my parents.
I remember being wheeled into the OR, seeing the Coleman cooler and watching a nurse sort mounds and mounds of clamps and other metal instruments.
"This is like a kitchen!" I remarked. "It looks like that person is sorting the utensils." I wanted to stay awake and watch more of the hustle and bustle going on around me, but all too soon the anesthesia was given to me and I was out.
I woke up probably eight to ten hours later. I couldn't talk for a day or two since I had to stay on a ventilator. I tried to impress everyone by writing my notes of request in cursive or drawing small doodles. The recovery went great and within a week I was back home in Lincoln. What a difference from the first transplant!
This liver was a whole liver and from someone much younger than me. I seem to remember someone slipping me information that my liver had belonged to a four-year-old girl who'd died in a car crash, but I don't know for sure. I do know that this liver served me well up until last about a year ago. Sure, there were the occasional glitches, but that's bound to happen. For the first three years with my new liver I was PSC-free (PSC is my liver disease)! Unfortunately, it penetrated this liver and now, eight and half years later, the disease has taken control. Still, most organ transplants are supposed to last 10-15 years, so I'm proud of this liver for all that it's done for me. He's been strong.
Who knows what this next transplant experience will be like? All I know for sure is when I get that page on my beeper I am going to be one happy camper.
The gift of life is a fabulous one. I would be dead two times over if it weren't for organ donation. The miracle of giving life to one person through another's death is a gift from God. I will never take for granted the gifts that have been allowed me in my two livers. Every day that I'm alive is a miracle because of them. Please, please, if you are not already an organ donor, become one. What reason do you have not to? I and countless others are living proof that your decision to be an organ donor will save lives. And please, please, don't treat your organs badly. Live healthfully because in doing so you are preserving your life and, when it ends, you could be passing that health and vitality down to someone else. Who knows how many more people could have been saved if a person hadn't destroyed their organs with alcohol, drugs, or poor diet?
Even though they probably will never read this, I want to thank the families who made the decisions for their loved one's organs to be donated and gave me life. No amount of thanks can ever cover the gratitude I feel, but I still want to say thank you and God bless you! :)
Wednesday, July 16, 2008
I'm On The List!
I wanted to let you all know that, once some blood test results are acquired, I will officially be on the transplant list!
Hooray!!
Tomorrow is my surgery to remove my ovarian cysts and patch up any endometriosis. There’s a good chance I may lose one or even both of my ovaries. It all depends on how bad a state my reproductive organs are in. If I end up keeping one or both of my ovaries I will have to be on treatment to trick my body into thinking it has menopause so that I don’t ovulate. They are going to try and do the surgery laproscopically, but if there’s too much scar tissue or if something bad happens during the surgery, they will have to make an incision. I could be in the hospital 5 hours to 3 days after the surgery; it all depends on what happens and what they find.
I’ll try to post a blog as soon as I’m able after the surgery, but if you want to know how things are going immediately, feel free to call my mom’s cell or mine or check with my Gramma or sister. Someone will know what’s going on. If you need phone numbers, email me privately.
Hooray!!
Tomorrow is my surgery to remove my ovarian cysts and patch up any endometriosis. There’s a good chance I may lose one or even both of my ovaries. It all depends on how bad a state my reproductive organs are in. If I end up keeping one or both of my ovaries I will have to be on treatment to trick my body into thinking it has menopause so that I don’t ovulate. They are going to try and do the surgery laproscopically, but if there’s too much scar tissue or if something bad happens during the surgery, they will have to make an incision. I could be in the hospital 5 hours to 3 days after the surgery; it all depends on what happens and what they find.
I’ll try to post a blog as soon as I’m able after the surgery, but if you want to know how things are going immediately, feel free to call my mom’s cell or mine or check with my Gramma or sister. Someone will know what’s going on. If you need phone numbers, email me privately.
Tuesday, July 15, 2008
Liver Transplant Anecdotes, Part 1
Last night I was talking Rayne’s ear off about some of my transplant experiences and it occurred to me I’ve never really written them down. So here are some stories for ya.
Liver transplant number one: I’m eight years old, in the third grade and the year is 1995. We are living near St. Paul, Minnesota.
It was December 19th and I was in math class doing some horrible subtraction. I wanted nothing more than to put my pencil down and leave, so you can imagine my surprise when a voice came over the intercom, “Please send Rebecca Manner to the office. Her father is here to take her to a doctor’s appointment.” I stuffed the math worksheet into my backpack and made my way towards the office wondering why in the world my dad was picking me up and why I hadn’t heard about this doctor’s appointment before. My mom stayed at home with my sister who was four years old at the time and she would normally be the one to take me to any doctor’s appointments. My dad should have been at work.
My dad was waiting outside in the car and when I got in I pushed all my confused thoughts to the side and got to the heart of the matter, “Dad, am I gonna have to get a blood test at the doctor’s?”
My dad’s brow creased at this and he said, “Didn’t they tell you? Your liver is here. We’re going to get your new liver!”
“Oh. Really? Wow!” I stared out of the window and through my other excited thoughts I was thinking, “I’m going to have to get more than a blood test.”
We went home and I grabbed a few things, namely my favorite book about scorpions I’d checked out from the school library (you can imagine what a fine I had to pay for this later since I was in the hospital for around 3 months after the transplant). My dad left a note on the stairs for mom, who was apparently out shopping with my sister Natalie. It said something to the effect of, “The liver came. I called your mother.” Later in my life I found out my mom had framed it.
Dad and I drove the hour to Rochester where the Mayo Clinic was. My mom and sister arrived just in time to see me for a few minutes before I was wheeled into the OR. They’d been at Toys R Us when they’d gotten a call (I guess my mom had a cell phone or one of those transplant pagers) about a liver being available for me and they’d quick grabbed me a Barbie doll. This really made my day. A new liver and a new Barbie! Could things get any better?
Unfortunately, after a transplant that lasted far into the night and into the early morning, I had to be kept in a drug coma for three weeks or so and then had to learn to sit up and to walk again. But that’s another story.
Some interesting things that happened after the transplant while I was recovering:
One time Dorothy Hamill (the figure skater who won the Olympic medal and had the great haircut) came to visit me. She was very sweet and genuinely concerned. She mostly talked to my parents. She was so pretty and I felt so yellow and ugly. It didn’t do much for my self-esteem but it was cool to meet her (even though I had no clue who she was).
--------------
Often there are pet therapy animals brought around the hospital and I loved this. So one day, when I’d woken up from a nap, my Mom says, “Becca, you missed the Cardinal!” This was very distressing to me.
“I missed the little birdie?” I whined. At this my mom started laughing and had to explain to me that “cardinal” was also a name for a member of the clergy of the Catholic church. Since St. Mary’s (the hospital that’s part of Mayo) is a Catholic hospital so all sorts of famous clergy members visit there. Apparently this Cardinal was some big shot and it was a huge honor to have him come and bless you. I was disappointed and secretly thought that a bird would have been a lot cooler than some frumpy old priest.
--------------
One day my doctors had all congregated in my room and were discussing things with my parents. These conversations tended to be long and boring, so I pretty much tuned them out. However, on this particular day one of the doctor’s comments really stood out to me: “We’re going to do another transplant.”
I assumed, of course, that they were talking about me and burst out into tears. You have to realize I’d been in the hospital for a really long time and was having a very hard time and I didn’t think I could go through it all again. Everyone immediately jumped up and started comforting me. Turns out they were talking about a different patient. They all felt really bad and kept giving me pitying looks, but I was just embarrassed.
Stay tuned for transplant number 2 anecdotes!
Liver transplant number one: I’m eight years old, in the third grade and the year is 1995. We are living near St. Paul, Minnesota.
It was December 19th and I was in math class doing some horrible subtraction. I wanted nothing more than to put my pencil down and leave, so you can imagine my surprise when a voice came over the intercom, “Please send Rebecca Manner to the office. Her father is here to take her to a doctor’s appointment.” I stuffed the math worksheet into my backpack and made my way towards the office wondering why in the world my dad was picking me up and why I hadn’t heard about this doctor’s appointment before. My mom stayed at home with my sister who was four years old at the time and she would normally be the one to take me to any doctor’s appointments. My dad should have been at work.
My dad was waiting outside in the car and when I got in I pushed all my confused thoughts to the side and got to the heart of the matter, “Dad, am I gonna have to get a blood test at the doctor’s?”
My dad’s brow creased at this and he said, “Didn’t they tell you? Your liver is here. We’re going to get your new liver!”
“Oh. Really? Wow!” I stared out of the window and through my other excited thoughts I was thinking, “I’m going to have to get more than a blood test.”
We went home and I grabbed a few things, namely my favorite book about scorpions I’d checked out from the school library (you can imagine what a fine I had to pay for this later since I was in the hospital for around 3 months after the transplant). My dad left a note on the stairs for mom, who was apparently out shopping with my sister Natalie. It said something to the effect of, “The liver came. I called your mother.” Later in my life I found out my mom had framed it.
Dad and I drove the hour to Rochester where the Mayo Clinic was. My mom and sister arrived just in time to see me for a few minutes before I was wheeled into the OR. They’d been at Toys R Us when they’d gotten a call (I guess my mom had a cell phone or one of those transplant pagers) about a liver being available for me and they’d quick grabbed me a Barbie doll. This really made my day. A new liver and a new Barbie! Could things get any better?
Unfortunately, after a transplant that lasted far into the night and into the early morning, I had to be kept in a drug coma for three weeks or so and then had to learn to sit up and to walk again. But that’s another story.
Some interesting things that happened after the transplant while I was recovering:
One time Dorothy Hamill (the figure skater who won the Olympic medal and had the great haircut) came to visit me. She was very sweet and genuinely concerned. She mostly talked to my parents. She was so pretty and I felt so yellow and ugly. It didn’t do much for my self-esteem but it was cool to meet her (even though I had no clue who she was).
--------------
Often there are pet therapy animals brought around the hospital and I loved this. So one day, when I’d woken up from a nap, my Mom says, “Becca, you missed the Cardinal!” This was very distressing to me.
“I missed the little birdie?” I whined. At this my mom started laughing and had to explain to me that “cardinal” was also a name for a member of the clergy of the Catholic church. Since St. Mary’s (the hospital that’s part of Mayo) is a Catholic hospital so all sorts of famous clergy members visit there. Apparently this Cardinal was some big shot and it was a huge honor to have him come and bless you. I was disappointed and secretly thought that a bird would have been a lot cooler than some frumpy old priest.
--------------
One day my doctors had all congregated in my room and were discussing things with my parents. These conversations tended to be long and boring, so I pretty much tuned them out. However, on this particular day one of the doctor’s comments really stood out to me: “We’re going to do another transplant.”
I assumed, of course, that they were talking about me and burst out into tears. You have to realize I’d been in the hospital for a really long time and was having a very hard time and I didn’t think I could go through it all again. Everyone immediately jumped up and started comforting me. Turns out they were talking about a different patient. They all felt really bad and kept giving me pitying looks, but I was just embarrassed.
Stay tuned for transplant number 2 anecdotes!
Sunday, July 13, 2008
Lazy Trees and Drug Comas
The trees are lazy today. Every now and then they give a slight shudder to show their quiet joy but mostly they’re like me: letting the sweetness of a nice summer’s day sink in.
I love trees. I see them as living souls. I’d be speaking literally if I said I was a tree hugger; I really do hug trees. They’re very comforting. The only other non-brained thing that speaks to me so is books, and I suppose they’re both connected in a way since most books are made of trees. What if it were the other way around? A tree made of books…now that would make an interesting picture.
The point is: The trees were lazy today. As for me, I’m trying to get things done. I’m nowhere near good right now, but I have been feeling a bit better overall these last few days or so. I’ve been trying to use my small spaces of time to get things ready for my surgery Thursday. Also, I know that the time of month when my ovaries start screaming at me is coming any day now, and when that happens I won’t be out of bed for anything.
My dad was in town this weekend, which was fun. We did the usual El Toro dinner on the first
night, pizza on the second night. I made him make me one of the steaks he used to make me when I was a kid. I’ve been anemic lately which means I’ve wanted to eat meat (I usually don’t have much of an appetite for it, being a vegetarian during “normal” times). He bought me an awesome printer/scanner/copier so be ready to see some scanned stuff in the future!
Whatever happened with the transplant list situation? Ah, well now, that is a downer. When we went to Omaha on Wednesday they didn’t have my appointment anywhere in their records. As it so happened, a random psychiatrist was sitting around the Multi-Organ Clinic because his own patient hadn’t shown up. So I saw him. Not knowing he should do otherwise, he of course did not attend the meeting that happened the next hour to discuss my, and others, addition to the transplant list. So on Friday, when we called the Transplant Center, this was explained to us. They said that it was all organized now and I would be discussed this coming Wednesday (the 16th) and put on the list then.
I finished reading The Thirteenth Tale by Diane Setterfield. I can’t tell yet if I liked it enough to read it again or not, but it was a very good book. If you’re a book lover, I would recommend it. For some reason, it brought to mind Inkheart by Cornelia Funke, so I’m now reading that for the second time.
In other news, Rayne posted a blog about her treatments and I was very excited to see a picture of the squeaky toy rat I gave her, sitting on her IV pole. I told her she was to use it to annoy doctors and the like but apparently after giving it one squeak she was told that no further squeaking was allowed. Also, that same day (Friday) I had one of my pain episodes (most likely from bile not being able to flow through the bile ducts that my liver disease is slowly killing) and so I, like Rayne, spent the entire day in a drug coma. Let Friday the eleventh of July be heretofore known as Rayne And Becca Drug Coma Day. Or a more creative title if you can think of one. Frankly, I’m just too tired.
I love trees. I see them as living souls. I’d be speaking literally if I said I was a tree hugger; I really do hug trees. They’re very comforting. The only other non-brained thing that speaks to me so is books, and I suppose they’re both connected in a way since most books are made of trees. What if it were the other way around? A tree made of books…now that would make an interesting picture.
The point is: The trees were lazy today. As for me, I’m trying to get things done. I’m nowhere near good right now, but I have been feeling a bit better overall these last few days or so. I’ve been trying to use my small spaces of time to get things ready for my surgery Thursday. Also, I know that the time of month when my ovaries start screaming at me is coming any day now, and when that happens I won’t be out of bed for anything.
My dad was in town this weekend, which was fun. We did the usual El Toro dinner on the first
night, pizza on the second night. I made him make me one of the steaks he used to make me when I was a kid. I’ve been anemic lately which means I’ve wanted to eat meat (I usually don’t have much of an appetite for it, being a vegetarian during “normal” times). He bought me an awesome printer/scanner/copier so be ready to see some scanned stuff in the future!
Whatever happened with the transplant list situation? Ah, well now, that is a downer. When we went to Omaha on Wednesday they didn’t have my appointment anywhere in their records. As it so happened, a random psychiatrist was sitting around the Multi-Organ Clinic because his own patient hadn’t shown up. So I saw him. Not knowing he should do otherwise, he of course did not attend the meeting that happened the next hour to discuss my, and others, addition to the transplant list. So on Friday, when we called the Transplant Center, this was explained to us. They said that it was all organized now and I would be discussed this coming Wednesday (the 16th) and put on the list then.
I finished reading The Thirteenth Tale by Diane Setterfield. I can’t tell yet if I liked it enough to read it again or not, but it was a very good book. If you’re a book lover, I would recommend it. For some reason, it brought to mind Inkheart by Cornelia Funke, so I’m now reading that for the second time.
In other news, Rayne posted a blog about her treatments and I was very excited to see a picture of the squeaky toy rat I gave her, sitting on her IV pole. I told her she was to use it to annoy doctors and the like but apparently after giving it one squeak she was told that no further squeaking was allowed. Also, that same day (Friday) I had one of my pain episodes (most likely from bile not being able to flow through the bile ducts that my liver disease is slowly killing) and so I, like Rayne, spent the entire day in a drug coma. Let Friday the eleventh of July be heretofore known as Rayne And Becca Drug Coma Day. Or a more creative title if you can think of one. Frankly, I’m just too tired.
Friday, July 11, 2008
Blog Time!
Nope, I haven’t fallen off the planet. Wait, I take that back, I think I did fall off the planet. Rayne came up with a great word for what I’ve been feeling: disassociation (see last two blog posts). I’m doing a lot better today, however, and I think it has something to do with not taking my sleep medication last night. Anyway, my lack of…soberness, self and abundance of disassociation made me sort of just float away from the whole blog thing. I’m still not in that much of a talkative mood, but I’ll see what I can do.
I had an awesome birthday. I got lots of presents and everyone who came to my birthday tea got to see first hand what a pathetic mess I’ve become. A lot of people thought I was very funny, especially during the instance which I will recount for you now:
Becca: Oh what a beautiful purse! And look, there are little crumpled up dollar bills inside!
Kathy: Guess how many!
Becca: Oh, okay. Um, I think there are about twelve.
**Silence**
Becca: Should I count them to find out? One, two, three…
At this point I notice everyone is staring at me with a certain intensity I take to be there because they want to find out how many dollar bills I got.
Becca: Nineteen…twenty…twenty one! Wow, there are twenty one dollars because I’m twenty one!
**Silence**
Mom: Uh, yeah, Becca.
Ginny: What do you think Kathy meant when she said, “Guess how many?” She wasn’t being literal.
Becca: Ooh. I’m on drugs people! Give me a break!
I think you had to be there. Anyway, I also got to eat supper at the Tidball’s house and go to Dairy Queen with them. I got to go see Rayne and her family and rats while I was in Omaha. And tonight we got to go to Noodles since I had a coupon for a free dish as a birthday present. Oh, and you’ll never guess what my Mom and sister got me for my birthday: sweatpants.
Totally didn’t see that one coming, right?
Today I got my new license that says I’m twenty one or older and can buy alcohol. We went to the grocery store and Mom asked if I wanted to buy something just for the heck of it. I said no, I’d wait until Dad got here this weekend and went out to get his beer.
Ya know what? My liver really hurts so I’m gonna make this quick.
No, I haven’t heard from Omaha yet, but I should be on the transplant list by now. Yes, I will post pics from my birthday tea. My mom wants to stop working evenings so she can take care of me because she’s afraid I’ll die or go crazy or something while she’s gone. I got Rocky Horror Picture Show on DVD with a prompter feature that tells you when to throw your rice, when to snap your gloves, etc. I am currently drinking Metamucil for reasons I don’t care to disclose. Rayne is knitting me an afghan. I’m getting a blood test tomorrow. I finished knitting a sock and I drew a picture of a teapot lady. I got lots of balloons for my birthday.
I had an awesome birthday. I got lots of presents and everyone who came to my birthday tea got to see first hand what a pathetic mess I’ve become. A lot of people thought I was very funny, especially during the instance which I will recount for you now:
Becca: Oh what a beautiful purse! And look, there are little crumpled up dollar bills inside!
Kathy: Guess how many!
Becca: Oh, okay. Um, I think there are about twelve.
**Silence**
Becca: Should I count them to find out? One, two, three…
At this point I notice everyone is staring at me with a certain intensity I take to be there because they want to find out how many dollar bills I got.
Becca: Nineteen…twenty…twenty one! Wow, there are twenty one dollars because I’m twenty one!
**Silence**
Mom: Uh, yeah, Becca.
Ginny: What do you think Kathy meant when she said, “Guess how many?” She wasn’t being literal.
Becca: Ooh. I’m on drugs people! Give me a break!
I think you had to be there. Anyway, I also got to eat supper at the Tidball’s house and go to Dairy Queen with them. I got to go see Rayne and her family and rats while I was in Omaha. And tonight we got to go to Noodles since I had a coupon for a free dish as a birthday present. Oh, and you’ll never guess what my Mom and sister got me for my birthday: sweatpants.
Totally didn’t see that one coming, right?
Today I got my new license that says I’m twenty one or older and can buy alcohol. We went to the grocery store and Mom asked if I wanted to buy something just for the heck of it. I said no, I’d wait until Dad got here this weekend and went out to get his beer.
Ya know what? My liver really hurts so I’m gonna make this quick.
No, I haven’t heard from Omaha yet, but I should be on the transplant list by now. Yes, I will post pics from my birthday tea. My mom wants to stop working evenings so she can take care of me because she’s afraid I’ll die or go crazy or something while she’s gone. I got Rocky Horror Picture Show on DVD with a prompter feature that tells you when to throw your rice, when to snap your gloves, etc. I am currently drinking Metamucil for reasons I don’t care to disclose. Rayne is knitting me an afghan. I’m getting a blood test tomorrow. I finished knitting a sock and I drew a picture of a teapot lady. I got lots of balloons for my birthday.
Saturday, July 5, 2008
Quiet Resignation
I was laying there in my bed just awhile ago. I had just told my mother the various symptoms I’d experienced during the day when I realized that I could barely remember what had happened during my day. I mean, I could tell you a series of events, but it was like I wasn’t even there. Like I only viewed them through a foggy glass. Then I thought about how I can’t even think of the most obvious words anymore. I was told this would happen, that my memory and my ability to aptly articulate what I wanted to say would fade, but it’s still all so surprising and strange. Perhaps I’ve always been a bit absent-minded, but I think I’ve been quick witted all the same.
Last night, as I was laying on the ground, watching fireworks, I was thinking about how it might be fun to toss the bug spray can up in the air and catch it. Which, of course, is very dangerous when you’re lying down and it’s dark. I mentioned to Gina that I needed supervision. And the sad thing is, that even though it was said half in jest, I wasn’t that far off the mark. This morning my mom and sister left me alone in Barnes and Noble while they looked at some of the surrounding stores. I was given a gift card and told to pick out something for my birthday. I was able to do that in an orderly enough manner, but I think I then ended up circling the same two bookshelves for quite some time. I remember thinking that I should really sit down, I wasn’t in my right mind, the booksellers were starting to give me weird glances and why the hell did Mom and Ginny think it was a good idea to leave me alone in a public place? It was like I was incapable of stopping myself from acting drugged and so I got out my cell phone and called my sister while I circled the shelves. She was, thankfully, right outside the bookstore doors.
Everything seems to move in slow motion. I don’t think I even blink as quickly as I used to. I move slower, I think slower, my days go slower. And sometimes I take on a certain task that I estimate will take, let’s say, half an hour only to be surprised that it’s taken me two; I’ve moved slower and thought I was moving at a normal pace. I know the fatigue is part of it, although “fatigue” seems like such a weak word for what I experience. It’s as if all of my internal organs are draped with weights of sand and sometimes the mere thought of getting up to go to the bathroom or get a drink is enough to make my stomach heave. I could probably sleep all day and night if I wanted to. It’s only loyalty to this world and my semi-life that eventually jerk me to painful consciousness. If there’s one thing I hate it’s naps. I always feel like if I fall asleep during the day I have to apologize. And sometimes I do, usually to my sister because I feel like I’ve cheated her of some sort of summer fun she should be having with me. Naps make me feel like I’ve missed out, even if nothing remarkable has happened.
So it seems as if I’m living my life from inside this cottony bubble. Even when I’m conscious for it, I’m not really all there. Sure, I put on a face for the public, but even then there are screw ups. I’ve become this quiet, humming persona inside my body, quietly slipping in and out of awareness, too tired to make myself known. My family must notice it. I think there is a certain knowledge that passes among them when I grow especially quiet, or my eyes slide in and out of focus or I sometimes take gasping breaths because the fatigue has been weighing down on my lungs. Yes, I know they notice, but I don’t have the energy to care. Although now that I think about it, I wonder how much it effects them. I never thought of my first liver transplant as being so traumatic until a year or two ago when my Mom and sister admitted that when they started talking about it they both started crying uncontrollably. It unsettled me that something so horrible happened to me, and yet I was the least effected.
I wonder if, when I get a new liver, I’ll wake up and instantly be my old witty, energetic self again. That’s more or less how it happened with my second transplant. When the social worker asked me if I had any fears for my upcoming transplant I said, “Yes. Complications,” and told him about my first transplant. And that’s the weird thing. Living in this bubble is mildly familiar. It’s where I lived back then when I was eight year old, in and out of a coma for months, plagued by pain and a quiet resignation to detachment from the material world. If anyone has tasted the colored smoke between life and death, it’s me.
I’ve been slipping deeper into the bubble for a couple days now, and then, like I said, I gave the fourth of July my all. When I woke up this morning, I was gone. Not only could I feel it, but I think I saw it in my Mom’s face when she entered my room shortly after I woke up. I ask myself, isn’t this what I fear the most? Losing myself? But I don’t have the energy to care. I ask myself, what about the future? Can you stand living like this until a liver is found for you? Again, I don’t have the energy to care or to even envision the future. I don’t even know if I believe in time anymore. I know that I trust God, I know I have no fear. Only quiet resignation. This is what I do best, waiting to see what my road my body will lead me down next.
Last night, as I was laying on the ground, watching fireworks, I was thinking about how it might be fun to toss the bug spray can up in the air and catch it. Which, of course, is very dangerous when you’re lying down and it’s dark. I mentioned to Gina that I needed supervision. And the sad thing is, that even though it was said half in jest, I wasn’t that far off the mark. This morning my mom and sister left me alone in Barnes and Noble while they looked at some of the surrounding stores. I was given a gift card and told to pick out something for my birthday. I was able to do that in an orderly enough manner, but I think I then ended up circling the same two bookshelves for quite some time. I remember thinking that I should really sit down, I wasn’t in my right mind, the booksellers were starting to give me weird glances and why the hell did Mom and Ginny think it was a good idea to leave me alone in a public place? It was like I was incapable of stopping myself from acting drugged and so I got out my cell phone and called my sister while I circled the shelves. She was, thankfully, right outside the bookstore doors.
Everything seems to move in slow motion. I don’t think I even blink as quickly as I used to. I move slower, I think slower, my days go slower. And sometimes I take on a certain task that I estimate will take, let’s say, half an hour only to be surprised that it’s taken me two; I’ve moved slower and thought I was moving at a normal pace. I know the fatigue is part of it, although “fatigue” seems like such a weak word for what I experience. It’s as if all of my internal organs are draped with weights of sand and sometimes the mere thought of getting up to go to the bathroom or get a drink is enough to make my stomach heave. I could probably sleep all day and night if I wanted to. It’s only loyalty to this world and my semi-life that eventually jerk me to painful consciousness. If there’s one thing I hate it’s naps. I always feel like if I fall asleep during the day I have to apologize. And sometimes I do, usually to my sister because I feel like I’ve cheated her of some sort of summer fun she should be having with me. Naps make me feel like I’ve missed out, even if nothing remarkable has happened.
So it seems as if I’m living my life from inside this cottony bubble. Even when I’m conscious for it, I’m not really all there. Sure, I put on a face for the public, but even then there are screw ups. I’ve become this quiet, humming persona inside my body, quietly slipping in and out of awareness, too tired to make myself known. My family must notice it. I think there is a certain knowledge that passes among them when I grow especially quiet, or my eyes slide in and out of focus or I sometimes take gasping breaths because the fatigue has been weighing down on my lungs. Yes, I know they notice, but I don’t have the energy to care. Although now that I think about it, I wonder how much it effects them. I never thought of my first liver transplant as being so traumatic until a year or two ago when my Mom and sister admitted that when they started talking about it they both started crying uncontrollably. It unsettled me that something so horrible happened to me, and yet I was the least effected.
I wonder if, when I get a new liver, I’ll wake up and instantly be my old witty, energetic self again. That’s more or less how it happened with my second transplant. When the social worker asked me if I had any fears for my upcoming transplant I said, “Yes. Complications,” and told him about my first transplant. And that’s the weird thing. Living in this bubble is mildly familiar. It’s where I lived back then when I was eight year old, in and out of a coma for months, plagued by pain and a quiet resignation to detachment from the material world. If anyone has tasted the colored smoke between life and death, it’s me.
I’ve been slipping deeper into the bubble for a couple days now, and then, like I said, I gave the fourth of July my all. When I woke up this morning, I was gone. Not only could I feel it, but I think I saw it in my Mom’s face when she entered my room shortly after I woke up. I ask myself, isn’t this what I fear the most? Losing myself? But I don’t have the energy to care. I ask myself, what about the future? Can you stand living like this until a liver is found for you? Again, I don’t have the energy to care or to even envision the future. I don’t even know if I believe in time anymore. I know that I trust God, I know I have no fear. Only quiet resignation. This is what I do best, waiting to see what my road my body will lead me down next.
Thursday, June 26, 2008
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.
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.
Wednesday, June 18, 2008
Purple Haze
(Rayne, I'm too lazy to write this out again, so I'm stealing my own words from the email I sent you)
My mom woke me up this morning asking why I hadn't dropped off Shirley at the vets for her surgery and I said, "I told you yesterday you were supposed to do it!" She didn't remember me saying anything of the kind and she had to leave for play rehersal so guess who had to get up, throw on some clothes and drive? Mornings are the hardest for me, so I hoped that the pain wouldn't kick in until I'd gotten home. Somehow, though, I dragged myself to the grocery store for more rice milk and yogurt. I stocked up on baby food, too since the only food I've been eating the last few days are nutritional shakes and potato chips. I also got one of those "Gerber Graduates" meals. Just my size! When I came home I made my sister make me some french toast, which I ate even though it made me full and nauseous for hours. Oh well. I wouldn't have eaten anything otherwise. And I was able to go pick up Shirley just now and she is doing wonderfully. So yes, after all that I want to pass out. My liver is mad. I don't think he likes me anymore.
I managed to take a shower later on and then drove back to the clinic to pick up Shirley. She did great and her site looked wonderful. I was so tired, though, I probably shouldn't have been driving. I went home and took a codine.
Then I went to art! It was a blast. I drew a picture of a pot of peas and wrote "Peas are my favorite-Rayne" under it. I also drew a black cat, a couch and a girl with a huge, green, liver with an angry face and two sad ovaries. She had yellow eyes like me. I just noticed today how yellow my eyes are. My bilirubin must be through the roof. The last thing I drew was a toilet that had another Rayne quote, "I don't care if I have to strap a potty to my ass". I just got such a kick out of those lines that I had to draw corresponding doodles.
My art teacher introduced me to a mother of a new student the way she always introduces me, "This is Becca and I first met her when she was dying"
"Yup," I say casually, "And I'm dying again now."
I first met my art teacher when I was 11 and she was my 6th grade art teacher. March of that school year I got my second liver transplant. Ms. Mattley has a flair for the dramatic. Now I just go to her house and there's only one other student there besides my sister and we sat outside and worked on whatever project we wanted.
I finished The Host last night. Excellent book! Some of her character scenarios are the same as in her Twilight books, but it was still very original.
A couple days ago I got my list of appointments for my transplant evaluation. The evaluation lasts three says and it deteremines if I need a new liver transplant and if I do (which is very, very likely) then it will determine where and how I am placed on the list. The test are from early morning until early afternoon and consist of everything from X-Rays to social workers.
Apparently they have me scheduled for a chest x-ray, EkG, blood test and drug screen all at the same time. I'm not looking forward to seeing the nutritionist. "Yes, I eat a diet of potato chips and Boost." Like that's going to go over well. I can't eat that much, but the nutritionist will probably demand some potato chip-free diet and make me eat, I dunno, cereal made out of crushed up vitamins or something. Or make me guzzle a bag of that IV fluid.
I love IV nutrition. No eating involved and it makes me feel so much better.
When I was a kid, before I had procedures or surgery, my mom and I would write silly messages on my tummy and tape gum and the like to it. That way, when the doctor moved my hospital gown he got a surprise. We figured out all sorts of ways to make hospitals fun. I can't really do that anymore now that I'm 20 (21 in three weeks!). They'd probably put me in a straight jacket.
But that made me think that, before I get all in this transplant thing, I want to do something to make me a little more original. I want to do something kinda crazy. Ya know, just in case I die or something. The first thing that came to mind was purple highlights. I know I'm lame, so shut up. But now I'm dead serious. I want to get purple streaks in my hair. I'm gonna do it! I mean, I've been pretty much wearing sweats and no makeup for 6 months. I can't be as original with my apperence as I would normally. But I can change my hair.
My mom woke me up this morning asking why I hadn't dropped off Shirley at the vets for her surgery and I said, "I told you yesterday you were supposed to do it!" She didn't remember me saying anything of the kind and she had to leave for play rehersal so guess who had to get up, throw on some clothes and drive? Mornings are the hardest for me, so I hoped that the pain wouldn't kick in until I'd gotten home. Somehow, though, I dragged myself to the grocery store for more rice milk and yogurt. I stocked up on baby food, too since the only food I've been eating the last few days are nutritional shakes and potato chips. I also got one of those "Gerber Graduates" meals. Just my size! When I came home I made my sister make me some french toast, which I ate even though it made me full and nauseous for hours. Oh well. I wouldn't have eaten anything otherwise. And I was able to go pick up Shirley just now and she is doing wonderfully. So yes, after all that I want to pass out. My liver is mad. I don't think he likes me anymore.
I managed to take a shower later on and then drove back to the clinic to pick up Shirley. She did great and her site looked wonderful. I was so tired, though, I probably shouldn't have been driving. I went home and took a codine.
Then I went to art! It was a blast. I drew a picture of a pot of peas and wrote "Peas are my favorite-Rayne" under it. I also drew a black cat, a couch and a girl with a huge, green, liver with an angry face and two sad ovaries. She had yellow eyes like me. I just noticed today how yellow my eyes are. My bilirubin must be through the roof. The last thing I drew was a toilet that had another Rayne quote, "I don't care if I have to strap a potty to my ass". I just got such a kick out of those lines that I had to draw corresponding doodles.
My art teacher introduced me to a mother of a new student the way she always introduces me, "This is Becca and I first met her when she was dying"
"Yup," I say casually, "And I'm dying again now."
I first met my art teacher when I was 11 and she was my 6th grade art teacher. March of that school year I got my second liver transplant. Ms. Mattley has a flair for the dramatic. Now I just go to her house and there's only one other student there besides my sister and we sat outside and worked on whatever project we wanted.
I finished The Host last night. Excellent book! Some of her character scenarios are the same as in her Twilight books, but it was still very original.
A couple days ago I got my list of appointments for my transplant evaluation. The evaluation lasts three says and it deteremines if I need a new liver transplant and if I do (which is very, very likely) then it will determine where and how I am placed on the list. The test are from early morning until early afternoon and consist of everything from X-Rays to social workers.
Apparently they have me scheduled for a chest x-ray, EkG, blood test and drug screen all at the same time. I'm not looking forward to seeing the nutritionist. "Yes, I eat a diet of potato chips and Boost." Like that's going to go over well. I can't eat that much, but the nutritionist will probably demand some potato chip-free diet and make me eat, I dunno, cereal made out of crushed up vitamins or something. Or make me guzzle a bag of that IV fluid.
I love IV nutrition. No eating involved and it makes me feel so much better.
When I was a kid, before I had procedures or surgery, my mom and I would write silly messages on my tummy and tape gum and the like to it. That way, when the doctor moved my hospital gown he got a surprise. We figured out all sorts of ways to make hospitals fun. I can't really do that anymore now that I'm 20 (21 in three weeks!). They'd probably put me in a straight jacket.
But that made me think that, before I get all in this transplant thing, I want to do something to make me a little more original. I want to do something kinda crazy. Ya know, just in case I die or something. The first thing that came to mind was purple highlights. I know I'm lame, so shut up. But now I'm dead serious. I want to get purple streaks in my hair. I'm gonna do it! I mean, I've been pretty much wearing sweats and no makeup for 6 months. I can't be as original with my apperence as I would normally. But I can change my hair.
Subscribe to:
Posts (Atom)
