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
Showing posts with label liver disease. Show all posts
Showing posts with label liver disease. Show all posts
Friday, September 12, 2008
Wednesday, July 30, 2008
Still Alive
July 27th, 2008
Good news! The obstruction has gone away on its own! That means no surgery. It does mean, however, that the painful part is about to begin. Still, I may be allowed clear liquids tomorrow, which will be nice. I'll continue to stay in the hospital to be monitored and to keep my pain controlled.
Becca
July 29th,2008
Sorry I haven't been getting the updates out very often. Please don't freak out if you don't hear from me for a day or two. I'm just tired and in pain. It hurts to sit up for too long and I type really slow since I'm on drugs and there are medical devices all over my hands and fingers.
Yesterday I was moved to a clear liquid diet but had a bad day pain-wise.
Today I'm on soft foods which is going okay,but it's rather uncomfortable since they make me feel so full and they get things moving in my tummy. I had the brillant idea today of taking a shower during the half hour I couldn't have morphine. By the time I could have it again Iwas just about crying and it took me all day to reach a tolerable pain level again. I've also been itching myself so much due to the morphine that I've given myself a horrible scratch. They've been giving me benedryl for it, which totally knocks me out.
Tomorrow I'll get my tummy x-rayed to check up on things. My blood tests have been looking good.
Been getting very irritable with the hospital, but I suppose I've been in one hospital or another for almost 2 now.
Becca
July 30th, 2008
Mollie here. Becca is two weeks out on this project that was supposed to be outpatient surgery. Her belly is less like the sixth month of pregnancy and more like the ill-advised guys who mow shirtless. Instead of tattoos, she has purple blotches and peeling skin. These are all actually good things.
Stuff is moving through her system, and causing the same excruciating pain that brought us here. It's hard to believe that this is called progress, but she is bravely holding on and trying to go with oral pain meds and the occasional saving shot. This is part of the reason why I never watch movies that aren't G rated, and I don't go on carnival rides. Watching this is enough.
Her jaundice is contrasting ever so subtly with the fuschia and violet streaks in her black and brown hair, and is not really enhanced favorably by the hospital gowns which she sports in that oh-so-ghetto baggy fashion, but it's a look. The best part about taking little walks is when she can step outside and scratch her feet on the rough concrete.
The GI surgeon who has been following Becca says his job is done, since the partail bowel obstruction has marched off the xray radar screen, and the abdominal adhesions might also go their merry way while still in their formative stages. Pain is not his department, only tracking gas.
Dr. Cada, her gynecologist, is trying different potions to work with the pain issues. Now we know what lab rats feel like, or the proverbial guinea pig. It doesn't help that the food people ask her what she wants to eat, and then they give her exactly what she has requested to NOT have instead. The nurses are sometimes very helpful, and sometimes very invisible, and in the wee hours are downright wacky.
The incision sites are all healing nicely, but there is this strange spot on her stomach where she scratched an itch and it has been leaking blood.
If she were Julie Andrews, she would sing about these favorite things: cream of wheat, Boost drinks, foot rubs, narcotics, brushing hair, her comfy hospital bed, her afghan, her heating pad, ice chips, photos of her cats, silly balloons. little emails, and distracting visitors.
So maybe tonight will be a better night, and someday we will all party and sing hey nonny nonny again. Thank you for keeping us all in your thoughts. Mollie
Good news! The obstruction has gone away on its own! That means no surgery. It does mean, however, that the painful part is about to begin. Still, I may be allowed clear liquids tomorrow, which will be nice. I'll continue to stay in the hospital to be monitored and to keep my pain controlled.
Becca
July 29th,2008
Sorry I haven't been getting the updates out very often. Please don't freak out if you don't hear from me for a day or two. I'm just tired and in pain. It hurts to sit up for too long and I type really slow since I'm on drugs and there are medical devices all over my hands and fingers.
Yesterday I was moved to a clear liquid diet but had a bad day pain-wise.
Today I'm on soft foods which is going okay,but it's rather uncomfortable since they make me feel so full and they get things moving in my tummy. I had the brillant idea today of taking a shower during the half hour I couldn't have morphine. By the time I could have it again Iwas just about crying and it took me all day to reach a tolerable pain level again. I've also been itching myself so much due to the morphine that I've given myself a horrible scratch. They've been giving me benedryl for it, which totally knocks me out.
Tomorrow I'll get my tummy x-rayed to check up on things. My blood tests have been looking good.
Been getting very irritable with the hospital, but I suppose I've been in one hospital or another for almost 2 now.
Becca
July 30th, 2008
Mollie here. Becca is two weeks out on this project that was supposed to be outpatient surgery. Her belly is less like the sixth month of pregnancy and more like the ill-advised guys who mow shirtless. Instead of tattoos, she has purple blotches and peeling skin. These are all actually good things.
Stuff is moving through her system, and causing the same excruciating pain that brought us here. It's hard to believe that this is called progress, but she is bravely holding on and trying to go with oral pain meds and the occasional saving shot. This is part of the reason why I never watch movies that aren't G rated, and I don't go on carnival rides. Watching this is enough.
Her jaundice is contrasting ever so subtly with the fuschia and violet streaks in her black and brown hair, and is not really enhanced favorably by the hospital gowns which she sports in that oh-so-ghetto baggy fashion, but it's a look. The best part about taking little walks is when she can step outside and scratch her feet on the rough concrete.
The GI surgeon who has been following Becca says his job is done, since the partail bowel obstruction has marched off the xray radar screen, and the abdominal adhesions might also go their merry way while still in their formative stages. Pain is not his department, only tracking gas.
Dr. Cada, her gynecologist, is trying different potions to work with the pain issues. Now we know what lab rats feel like, or the proverbial guinea pig. It doesn't help that the food people ask her what she wants to eat, and then they give her exactly what she has requested to NOT have instead. The nurses are sometimes very helpful, and sometimes very invisible, and in the wee hours are downright wacky.
The incision sites are all healing nicely, but there is this strange spot on her stomach where she scratched an itch and it has been leaking blood.
If she were Julie Andrews, she would sing about these favorite things: cream of wheat, Boost drinks, foot rubs, narcotics, brushing hair, her comfy hospital bed, her afghan, her heating pad, ice chips, photos of her cats, silly balloons. little emails, and distracting visitors.
So maybe tonight will be a better night, and someday we will all party and sing hey nonny nonny again. Thank you for keeping us all in your thoughts. Mollie
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.
Tuesday, June 17, 2008
Anatomy of a hoodie
Just thought I'd throw in a pic of a nook in our backyard for effect.Well, the ulcerative colitis has calmed down a little. But I'm still so tired. The tiredness that seems to make my heart feel like lead and my lungs feel cramped. My appetite has gone from bad to worse. Back to a diet of nutritional shakes for me! Apparently I've lost, like, 10 lbs. in just a few months, but it certainly doesn't show. Probably has something to do with my liver being the size of Texas and my ovaries being the size of...um....a state slightly smaller than Texas. Anyway, I'm complaining, so I'll shut up.
I did go to the mall with my sister. We only went to a couple stores, so it wasn't a major feat or anything. And I got the coolest hoodie ever. It's all neon colored on a black background and it makes you look like you've just stepped in front of an x-ray because it's got bones on it! As in, it corresponds to the bones in your body. Rib cage on the front, arm bones on the side, etc. Even the hood has a skull. It reminds me of my favorite t-shirt as a kid which was more of the same. When you grow up in the hospital you develop a deep affection for anatomy. The hoodie makes me happy since it reminds me of my childhood.
Shirley, our rat, has to have yet another surgery. In just a week she's sprouted a tumor near her groin which is effecting her bladder. She's getting the tumor removed tomorrow morning, so that's good. Poor Shirley has already been through two tumor removals and is getting over an infection from her last surgery, which was about 2 weeks ago.
We're in the process of moving my rats to Capital City Rat Rescue to live with Staci until I'm healthy enough to take care of them again. Two of my rats are already there. Once I rat starts requiring extra care, it has to be moved to Staci's since I can't give it the care it needs. And boy does Staci spoil my rats!
Speaking of rats, I got this message on YouTube today (where I post videos of my rattie clan):
Subject: RATS!!!!!!!!!!
I LOVE YOUR RATS AND THEY ARE SO CUTE I HAVE 2 RATS AND LOVE THEM I AM A BIG FAN OF YOUR RATS AND A BIG FAN OF YOU TOO SO GOOD VIDEOS PLZ SEND MESSAGE TO ME THANKS BUT I DONT HAVE ANY VIDEOS RIGHT BUT WILL SOON THANKS SEND A MESSAGE SAYING YOU GOT IT THANKS
Um, someone needs to give this person a chill pill. I'm a little creeped out. I don't think I'll reply. It sounds like they're as obsessed with me as they are with my rats. I once had someone on YouTube tell me they liked the sound of my voice. Is it just me or does that seem odd?
Anyway, it's raining. I'm sleepy, but I doubt I'll be able to sleep for awhile. Think I'll spend a little more time online and then read my novel. Oh, and feed the rats, of course!
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