Today is the first day of a new year! I have a ton of stuff to look forward to this time, even more so than last year. First, by the end of the year, I'll have a new kidney. Will everything work out and go smoothly with my transplant? At the next holiday season, will I be adjusting to a new life with minimim restrictions? Or will there be complications. Who will my donor be, and how will this change our relationship?
By the end of the year, I'll have a ton of new photos for photobucket from the vacations we've taken. Its been my dream to do some traveling overseas. I'd like to hit Italy, Mexico, Hawaii, South America, and maybe Tokyo. How far will I get in 2008? Will I get anywhere?
I'll be in a new house, definitely not still in my house now. Will I be in a condo? Or an actual house?
What will be new on the baby front? Will we finally be allowed to conceive? Or will things move forward with adoption?
January 1 offers and empty canvas, a clear board, and I have until the end of the year to fill it. 2008 looks good.
Tuesday, January 1, 2008
Friday, December 21, 2007
ugh...parents...
My parents can't agree on who should be the donor. Could you believe??? They both feel very strongly that it should be them, and it should not be the other. My parents are so crazy. Now, ever since I got the call from my mother, I've had an uneasy feeling about the whole thing, just all of a sudden. I've been thinking about it alot. I've been talking to friends, and my sister about it, and my husband. Most of them don't really understand. Whats worse, they don't understand how I could be so ungrateful and unappreciative that I have two people so willing to give me a kidney. But thats just it...
I read a story from a woman who had her father donate a kidney to her in 1975. She said that every year he sent her a card on the anniversary of the day he gave her a kidney. He said that he was lucky to be able to give birth to her twice.
You know the feeling that you have when you have a bill that needs to be paid, and you dont have the money for it? And every month goes by, and every time you get paid its on your mind that you STILL have that bill to pay? Or if you're in school, and you always, always have some homework assignment to be done. So whenever you're not doing homework, you feel like you need TO BE doing homework?
How can you ever repay the debt of a better life? How can you live knowing that you'll always owe? It seems to me that when people are so willing to donate, they are saying "Look how much I love you. I love you so much, look what I'm going to do for you." To have both my parents arguing, virtually competing for a chance to do this big thing for me, its terrifying.
I almost wish I could get a donor who I know is willing to do this simply because its necessary, not as a grand gesture. Now that the process is started, I don't want it to be either of my parents to tell the truth.
I read a story from a woman who had her father donate a kidney to her in 1975. She said that every year he sent her a card on the anniversary of the day he gave her a kidney. He said that he was lucky to be able to give birth to her twice.
You know the feeling that you have when you have a bill that needs to be paid, and you dont have the money for it? And every month goes by, and every time you get paid its on your mind that you STILL have that bill to pay? Or if you're in school, and you always, always have some homework assignment to be done. So whenever you're not doing homework, you feel like you need TO BE doing homework?
How can you ever repay the debt of a better life? How can you live knowing that you'll always owe? It seems to me that when people are so willing to donate, they are saying "Look how much I love you. I love you so much, look what I'm going to do for you." To have both my parents arguing, virtually competing for a chance to do this big thing for me, its terrifying.
I almost wish I could get a donor who I know is willing to do this simply because its necessary, not as a grand gesture. Now that the process is started, I don't want it to be either of my parents to tell the truth.
Wednesday, December 12, 2007
And we're off
So after I saw my doctor, I made the appointment for November 28 to have the HLA tissue typing done. We spent the whole day there, and then the following friday, which was Dec 7, I got a call from my mother to say she had gotten a call from the clinic to say that both she and my father were a match. She was a 5 point match out of 6, and my father was a four point match.
The coordinator explained to us during the class that these days anyone who is between a 1 and 5 point match can be a potential donor. Its the same difference between 1 and 5, the kidney will last the same legnth of years. For two people that are a 6 point match, the kidney has the potential to last much longer.
My mothers call kind of creeped me out. My mother and I are kind of close, but not in a real affectionate kind of way I guess. I don't know if that makes sense, but lets just quickly say that every year for my birthday I get to hear the story of how she almost died giving birth to me. How the doctors had told her she should have an abortion at 7 months, and she refused and made arrangements for my older brother and sister's care. Her phone call to tell me she "had news" kind of creeped my out in a way that I couldn't explain without sounding like an ungrateful jerk. It was that she was so enthusiastic, almost overly enthusiatic - excited I guess.
Anyway, the next phase now will be to decide who goes to the next round of testing.
The coordinator explained to us during the class that these days anyone who is between a 1 and 5 point match can be a potential donor. Its the same difference between 1 and 5, the kidney will last the same legnth of years. For two people that are a 6 point match, the kidney has the potential to last much longer.
My mothers call kind of creeped me out. My mother and I are kind of close, but not in a real affectionate kind of way I guess. I don't know if that makes sense, but lets just quickly say that every year for my birthday I get to hear the story of how she almost died giving birth to me. How the doctors had told her she should have an abortion at 7 months, and she refused and made arrangements for my older brother and sister's care. Her phone call to tell me she "had news" kind of creeped my out in a way that I couldn't explain without sounding like an ungrateful jerk. It was that she was so enthusiastic, almost overly enthusiatic - excited I guess.
Anyway, the next phase now will be to decide who goes to the next round of testing.
Tuesday, December 11, 2007
Long Time no blog
It's been a while, but its been a busy couple of months. I think I've picked the agency we want to move forward with adoption with, and I've gotten an ok to begin the transplant process from my nephrologist.
Since the transplant part is whats fresh in my mind right now, I'll save the adoption stuff for the next post.
I had an appointment with my nephrologist on November 19. We didn't get to go over my lab test results because Labcorp sucks and never gets her the tests before I get there. But we discussed my blood pressure which had not been under control for months and I asked her where I needed to be to get to eligibility for a transplant. She said that she was planning on asking me about that in January, but that there was no reason to wait until I had kidney failure. Watching my kidneys deteriorate has been like watching water boil. Its been slow going, although lately its been picking up. My last creatinine level was 3.8.
She said that my parents were the best choice as candidates, because in theory, whatever it was that made me sick in the first place hasn't been cured. And in theory, there is a possibility that whatever I had, maybe my siblings have too, just not showing it, or maybe it doesn't effect them. Plus, a transplant lasts like 20 years, so in 20 years maybe my parents won't be around, and I'll need to have my siblings to turn to then for another transplant.
So I went to both my parents and we called into register at the transplant clinic, and made an appointment to come down for match testing.
What did the initial testing consist of? Basically, we went in, and they took a shit load of blood from me, I mean a big butt load, like 16 viles. They gave my parents physical exams and took some of their blood as well. We had a presentation/class with the transplant coordinator to go over what to expect, what our options were, and to have any questions answered. That was like an hour My father decided to pick this time to doze off, even though we were at a round table with only about 5 other people. I told my mother to kick him, but her legs were too short. So, after that, I went to meet who I think was the transplant doctor. Dr. Lee. He asked me mad questions and gave me a quick look over. Blood pressure (it was 170/100 at first, and then dropped to 140/90 like 20 seconds later), checked for swelling, and my breathing. Thats pretty much it. The whole thing went from 10:30 to 4. I couldn't believe that we had spent the entire day there. From that point we just had to wait and see who was a match and what not.
Since the transplant part is whats fresh in my mind right now, I'll save the adoption stuff for the next post.
I had an appointment with my nephrologist on November 19. We didn't get to go over my lab test results because Labcorp sucks and never gets her the tests before I get there. But we discussed my blood pressure which had not been under control for months and I asked her where I needed to be to get to eligibility for a transplant. She said that she was planning on asking me about that in January, but that there was no reason to wait until I had kidney failure. Watching my kidneys deteriorate has been like watching water boil. Its been slow going, although lately its been picking up. My last creatinine level was 3.8.
She said that my parents were the best choice as candidates, because in theory, whatever it was that made me sick in the first place hasn't been cured. And in theory, there is a possibility that whatever I had, maybe my siblings have too, just not showing it, or maybe it doesn't effect them. Plus, a transplant lasts like 20 years, so in 20 years maybe my parents won't be around, and I'll need to have my siblings to turn to then for another transplant.
So I went to both my parents and we called into register at the transplant clinic, and made an appointment to come down for match testing.
What did the initial testing consist of? Basically, we went in, and they took a shit load of blood from me, I mean a big butt load, like 16 viles. They gave my parents physical exams and took some of their blood as well. We had a presentation/class with the transplant coordinator to go over what to expect, what our options were, and to have any questions answered. That was like an hour My father decided to pick this time to doze off, even though we were at a round table with only about 5 other people. I told my mother to kick him, but her legs were too short. So, after that, I went to meet who I think was the transplant doctor. Dr. Lee. He asked me mad questions and gave me a quick look over. Blood pressure (it was 170/100 at first, and then dropped to 140/90 like 20 seconds later), checked for swelling, and my breathing. Thats pretty much it. The whole thing went from 10:30 to 4. I couldn't believe that we had spent the entire day there. From that point we just had to wait and see who was a match and what not.
Friday, October 12, 2007
Lab Results
So I did get my labs back. And it looks like my creatinine has gone up to 3.7 since July, it was 3.1. A year ago it was 2.1. Also worth mentioning was that for the urinalysis, my protein was +4. For Vitamin D, I was at 10, which strikes me as interesting, since as of late my teeth have been falling out my head. It said that Vitamin D levels are supposed to be between 35 and 100. So pretty much, I'm way off. My hair is in pretty bad shape too.
I just got back from the dentist, and my bill is $1500 for all the work they have to do. And its not like I don't go to the dentist, I've lived at the dentist for the past three years. And he's telling me that we have a lot more shit to do. I got a crown put in today, which to me just looks like an enormous fake tooth. It's all blocky, like a big wooden block in my mouth. What was more depressing is that he had to file away a good tooth to make it fit right, and it still doesn't fit. They want me to pay $500 on Monday, and I have no idea how I'm going to do it. And he's telling me that I have to "commit" to getting the rest of the work done. Which basically means, commit my whole paycheck every month to him. I still have to get two implants, and something else done on the other side. I can't believe I actually have a tooth missing in my mouth because it rotted out. So I'm trying to find out if this is all because of my Vitamin D thing, and if the Vitamin D thing is yet another problem caused by my stupid kidneys.
People have no idea how much my life sucks.
I just got back from the dentist, and my bill is $1500 for all the work they have to do. And its not like I don't go to the dentist, I've lived at the dentist for the past three years. And he's telling me that we have a lot more shit to do. I got a crown put in today, which to me just looks like an enormous fake tooth. It's all blocky, like a big wooden block in my mouth. What was more depressing is that he had to file away a good tooth to make it fit right, and it still doesn't fit. They want me to pay $500 on Monday, and I have no idea how I'm going to do it. And he's telling me that I have to "commit" to getting the rest of the work done. Which basically means, commit my whole paycheck every month to him. I still have to get two implants, and something else done on the other side. I can't believe I actually have a tooth missing in my mouth because it rotted out. So I'm trying to find out if this is all because of my Vitamin D thing, and if the Vitamin D thing is yet another problem caused by my stupid kidneys.
People have no idea how much my life sucks.
Friday, October 5, 2007
OY VEY
Dude, I can't believe I STILL have not gotten my test results from my doctor. She's driving me nuts! All she has to do, is hand the paper to her secretary, and her secretary can go ahead and fax those papers to me. It's been all week.
Whats really freaking me out, is that this week, my blood pressure has been pretty much out of control. My neph. told me to double my dose of procardia, (even tho she's probably going to take me off of it since we have officially decided to not get pregnant), but all week on 60mgs of bp medicine, and its still in the 145/115 range. Lets not leave out the fact that my ankles look completely ridiculous. I took a lasix pill last night, but I don't think it really helped.
I've been paranoid all day. Went to the bathroom, and hoped no one would glimpse me through a crack in the stall door, leaning over the toilet, examining the bubbles in my pee, or the light color. It was really light, like just tinted water. And yeah , there was foam, like soap bubbles.
Anyhew, I hope I'll from my Dr. soon with these test results, I think I'm just bugging myself out.
Whats really freaking me out, is that this week, my blood pressure has been pretty much out of control. My neph. told me to double my dose of procardia, (even tho she's probably going to take me off of it since we have officially decided to not get pregnant), but all week on 60mgs of bp medicine, and its still in the 145/115 range. Lets not leave out the fact that my ankles look completely ridiculous. I took a lasix pill last night, but I don't think it really helped.
I've been paranoid all day. Went to the bathroom, and hoped no one would glimpse me through a crack in the stall door, leaning over the toilet, examining the bubbles in my pee, or the light color. It was really light, like just tinted water. And yeah , there was foam, like soap bubbles.
Anyhew, I hope I'll from my Dr. soon with these test results, I think I'm just bugging myself out.
Thursday, October 4, 2007
The waiting game
I always say that things are really about perspective. What's there is what you choose to see, and you can always choose to see bad or you can choose to see good. For a person to lose his legs can mean the end of his life, but for someone else who has no legs, that just IS his life. I think slowly, I'm starting to learn to embrace the concept of not experiencing pregnancy and birth. And really, it's not the end of the world, its actually the catalyst for a new world for me and my husband and whoever our baby is thats waiting for us out there. It's not what I envisioned, but its time for me to have a new vision, and run toward that.
What's harder to get a hold on, is this whole thing with my kidneys. Its like medical limbo, where apparently I'm not sick enough to be eligible for transplant, but at the same time, I feel like I'm struggling everyday with fatigue and food. I'm sooo tired, just ALL the time. At any point I could just lay down and go to sleep. It's frustrating not having energy, and to always have to push myself just to get through a basic day. I feel like I sleep for 12 hours a day, and still am always tired. My other struggle is with food. The salt restrictions are a real challenge. I'm way too tired to cook every single day, but when I'm out, in NYC, at work and everyone is having lunch at the cafes around, I really can't. And then I get depressed because I'm hungry, and then I just go and buy some pasta or something, but then my ankles and feet swell up. I'm looking a my feet now, with the tops bulging out of my ballet flats. I have nice feet normally, really I do! I feel like a person who is battling obesity, even though I get daily comments about how skinny I am. When I eat, I feel guilty, and even when I try to flavor my food with vinegar or lemon juice, it doesn't always come out that great and then I feel depressed.
I'm at the point where I'm hoping for kidney failure! Is that bad, I just want something to happen so I can get out of this rut. Whoever heard of feeling guilty or depressed when you eat? I'm tired of being tired. Hopefully, I'll be able to angle my thoughts to a positive perspective, I just have to find it.
I did go to the doctor this week, and they are supposed to fax me my lab report. So I'm just waiting, waiting, waiting, to see what kind of downward progress I made. How crazy is that?
What's harder to get a hold on, is this whole thing with my kidneys. Its like medical limbo, where apparently I'm not sick enough to be eligible for transplant, but at the same time, I feel like I'm struggling everyday with fatigue and food. I'm sooo tired, just ALL the time. At any point I could just lay down and go to sleep. It's frustrating not having energy, and to always have to push myself just to get through a basic day. I feel like I sleep for 12 hours a day, and still am always tired. My other struggle is with food. The salt restrictions are a real challenge. I'm way too tired to cook every single day, but when I'm out, in NYC, at work and everyone is having lunch at the cafes around, I really can't. And then I get depressed because I'm hungry, and then I just go and buy some pasta or something, but then my ankles and feet swell up. I'm looking a my feet now, with the tops bulging out of my ballet flats. I have nice feet normally, really I do! I feel like a person who is battling obesity, even though I get daily comments about how skinny I am. When I eat, I feel guilty, and even when I try to flavor my food with vinegar or lemon juice, it doesn't always come out that great and then I feel depressed.
I'm at the point where I'm hoping for kidney failure! Is that bad, I just want something to happen so I can get out of this rut. Whoever heard of feeling guilty or depressed when you eat? I'm tired of being tired. Hopefully, I'll be able to angle my thoughts to a positive perspective, I just have to find it.
I did go to the doctor this week, and they are supposed to fax me my lab report. So I'm just waiting, waiting, waiting, to see what kind of downward progress I made. How crazy is that?
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