I hit my first year with my new kidney exactly one month ago. And things have been fine. I still get pain in my legs now and then, but I think I can associate that with heavy activity, like running or taking stairs alot. I wonder how long that will last. I wonder if I'll EVER have stamina again. I get really tired, and I still have to be careful how I take my meds otherwise it makes me super groggy. Right now I'm on 10mgs of prograf, and a gram of celcept. I had to start the mycelex again, just to keep my tac up. But everything is very good.
I did a little ice skating this winter. They had a flooded park pavilion up the road that kids were skating on. I felt like I was learning all over again, my blades were a little shitty, and the ice was so choppy. But it felt nice to be skating again. Thinking about buying skates, but I'm not sure what I would do then.
We are still trying to get it together in three things front. Of course I asked about a baby, and Dr. Bologa to me "2010." Thats what we should aim for. Its all good. I'm looking for a better paying job. I'm at a dead end at wunderman, and I'm hoping if I can get into a new job, I'll be able to get into a new house. We'll see.
In the meantime, I'm getting older. I have a grey hair, and I'm noticing different things happening with me that didn't happen before. Who knows. I'm working hard, things HAVE to happen for me soon. I'm feeling good about this year. 2008 was not an easy one.
Sunday, April 19, 2009
Monday, December 29, 2008
End of a Year
Hey, check me out. Its the end of 2008, and what a hell of a year this was. Not just in the year itself, but in the grand scheme of things, the overall big picture. Here I am.
I looked at a picture of myself taken recently, and I thought, hey Bell, you wondered what you would be like grown up? Well there you are. I'll be 28 on my birthday in february, and I'm planning for great things.
The year started with a car accident, that was small, but turned out to be one of the most emotionally horrific experiences of my life. Just in the fact that my expectations of people was dampered considerably, and my optimistic outlook was damaged, but not done away with completely. Going through 5 months of going to court, it was just so unnecessary, and so very, very disappointing. And then to now owe grandmommy $1800. That is not going to turn out well at all. But its ok, we roll with the punches.
Had my kidney transplant. That part was tough and wonderful. I can't wait to be able to do things next year, but I'm happy to be healthy.
Gene paid off his child support, so that means that he can open a bank account, get a passport, maybe we can even get a nice tax refund this year. We'll see. But thats just one thing that we don't have looming over our heads.
Got a brand new truck, and paying out the ass in car payments for it.
Look at the world! The first black president, but certainly not the last. The economy is the worst that its been since the 30's. Not effecting me too much, except that I would like to get a better job, to move forward in my career, but somehow I can't. Gas prices went to a historic high ($4.50 a gallon here, now that effected me), and now have dropped down to about $1.80. People have died, and soooo many babies were born. I'm watching an era, a stage in the world pass through, as the decade comes to an end.
2008 was a starting line for us. The things that held us back aren't there any more, and 2009 and nine is going to be even better. Maybe we will finally be able to get those three elusive things that we've been chasing for the past five years. And I think I'm going to write another book. And let's see about having it published. Please keep us blessed in the New Year.
I looked at a picture of myself taken recently, and I thought, hey Bell, you wondered what you would be like grown up? Well there you are. I'll be 28 on my birthday in february, and I'm planning for great things.
The year started with a car accident, that was small, but turned out to be one of the most emotionally horrific experiences of my life. Just in the fact that my expectations of people was dampered considerably, and my optimistic outlook was damaged, but not done away with completely. Going through 5 months of going to court, it was just so unnecessary, and so very, very disappointing. And then to now owe grandmommy $1800. That is not going to turn out well at all. But its ok, we roll with the punches.
Had my kidney transplant. That part was tough and wonderful. I can't wait to be able to do things next year, but I'm happy to be healthy.
Gene paid off his child support, so that means that he can open a bank account, get a passport, maybe we can even get a nice tax refund this year. We'll see. But thats just one thing that we don't have looming over our heads.
Got a brand new truck, and paying out the ass in car payments for it.
Look at the world! The first black president, but certainly not the last. The economy is the worst that its been since the 30's. Not effecting me too much, except that I would like to get a better job, to move forward in my career, but somehow I can't. Gas prices went to a historic high ($4.50 a gallon here, now that effected me), and now have dropped down to about $1.80. People have died, and soooo many babies were born. I'm watching an era, a stage in the world pass through, as the decade comes to an end.
2008 was a starting line for us. The things that held us back aren't there any more, and 2009 and nine is going to be even better. Maybe we will finally be able to get those three elusive things that we've been chasing for the past five years. And I think I'm going to write another book. And let's see about having it published. Please keep us blessed in the New Year.
Wednesday, July 2, 2008
Tough Times
Ok, so I had a bit of a rough patch in my recovery. I hadn't been feeling well in a couple of weeks. You know, not SICK, just not feeling well. My energy was draining, and I was having a heard time focusing at work. I was starting to have pain in my legs, which my Nurse practitioner said was restless leg syndrome. Riding the train was harder and harder. I went for my regular labs on Monday, and when I got home I had the big D. I was feeling sick by this time. So I called the clinic, and they had been trying to get in touch with me. She said that my white blood cell count was too low - .8. It should have been above 2. She wanted me to start taking these shots called Nuepogen. I freaked out at the thought of having to stick myself with a needle. I told her I would have my sister do it for me, but then I decided if my sister could do it, if it could be done, then I could do it myself.
I went in to clinic that friday for them to show me how to give myself the injection. I was pretty chicken about it. My husband was like, you had no problem with surgery, this should be cake for you!
I made at least two tries. I tried to go in slow, but that was soooo painful. The nurse told me after the fact that I should do it fast. She gave me a count and on three I just popped it into my stomach fat. It was like it wasn't my body that I was sticking, it was like playdoh or something. Anyway, I did it and Saturday morning I woke up at 5:45 am, I knew I had a fever. I took tylenol but later in the morning I had the most excruciating pain throughout my whole body! Oh GOD, I was in so much pain. I called the clinic and had them page the doctor that was on call, but they didn't call back. But I knew if he did call, he would just tell me to go to the hospital. I didn't want to do that. I knew they wouldn't know what to do, and they would just keep me until they figured it out, or do something fucked up. I stayed home for two day, writhing on the bed in agony, and checking my temperature every hour as it went up and down. It spiked at 102. I continued to take the nuepogen and the rest of my meds.
Come to find out, I had a bad reaction, so they say. My WBC went up to 2.6, and then it dropped back down to 0.7. With vomiting, fever, pain, chills, tremors, everything was all messed up. My labs were totally out of whack. My creatinine was 2, cellcept was 6, my prograf was 12, then it went down to 4. Everything was wrong. I had to stay home from work, which for me has been the hardest thing. I have so many goals and ambitions, I can't get anywhere if I dont have a job. Who is going to approve me for a mortgage if my primary source of income is the government?
It took me about a week of being home, and finally I cried hysterically. I felt so hopeless and frustrated! You can't control what your body does at this point, and you never know what its going to do. How can I plan for my future when I have no idea what it will bring??? I felt like everything was out off my hands. I can't have anything that I've been working for, no baby, no house, even my car was taken from. That sense of being helpless and out of control, that is morbid hell for me. I just wanted to be dead.
A week and a half later, the nightmare is over, and I survived it. I went for my labs today and my wbc was about a 3 which is perfect. Everything is getting back to normal. My tac is still low, but I'm not so worried about that. It goes up and down all the damn time.
See, Bell? You always seem to forget that no matter how tough times are, you ALWAYS make it through it. Always.
I went in to clinic that friday for them to show me how to give myself the injection. I was pretty chicken about it. My husband was like, you had no problem with surgery, this should be cake for you!
I made at least two tries. I tried to go in slow, but that was soooo painful. The nurse told me after the fact that I should do it fast. She gave me a count and on three I just popped it into my stomach fat. It was like it wasn't my body that I was sticking, it was like playdoh or something. Anyway, I did it and Saturday morning I woke up at 5:45 am, I knew I had a fever. I took tylenol but later in the morning I had the most excruciating pain throughout my whole body! Oh GOD, I was in so much pain. I called the clinic and had them page the doctor that was on call, but they didn't call back. But I knew if he did call, he would just tell me to go to the hospital. I didn't want to do that. I knew they wouldn't know what to do, and they would just keep me until they figured it out, or do something fucked up. I stayed home for two day, writhing on the bed in agony, and checking my temperature every hour as it went up and down. It spiked at 102. I continued to take the nuepogen and the rest of my meds.
Come to find out, I had a bad reaction, so they say. My WBC went up to 2.6, and then it dropped back down to 0.7. With vomiting, fever, pain, chills, tremors, everything was all messed up. My labs were totally out of whack. My creatinine was 2, cellcept was 6, my prograf was 12, then it went down to 4. Everything was wrong. I had to stay home from work, which for me has been the hardest thing. I have so many goals and ambitions, I can't get anywhere if I dont have a job. Who is going to approve me for a mortgage if my primary source of income is the government?
It took me about a week of being home, and finally I cried hysterically. I felt so hopeless and frustrated! You can't control what your body does at this point, and you never know what its going to do. How can I plan for my future when I have no idea what it will bring??? I felt like everything was out off my hands. I can't have anything that I've been working for, no baby, no house, even my car was taken from. That sense of being helpless and out of control, that is morbid hell for me. I just wanted to be dead.
A week and a half later, the nightmare is over, and I survived it. I went for my labs today and my wbc was about a 3 which is perfect. Everything is getting back to normal. My tac is still low, but I'm not so worried about that. It goes up and down all the damn time.
See, Bell? You always seem to forget that no matter how tough times are, you ALWAYS make it through it. Always.
Sunday, May 11, 2008
Post-Op
I'm almost two months out from my transplant, and I really think I have never been better. There are so many little things that have changed with the transplant. My feet don't swell, my skin is so soft and clear, my finger nails grow. The best thing of all is that I have no diet restrictions. I still think twice before i eat anything, but then i remember that I have NO restrictions. Thats the best feeling. I'm chewing on green olives, at this very instant! I feel good and very confident in my new kidney.
The surgery itself was completely uneventful. I arrived at 9am, and immediately they had me change into a hospital robe and PJs. About 20 minutes after I finished changing, my father had arrived, and showed up in the waiting room, already changed out of his cloths too. We waited for what seemed to be another 15 minutes before a nurse arrived and took me to an exam room for one final exam and blood draw. From there they moved me to "holding" where they started the IV of antibiotics I would be needing for the surgery. My father apparently needed no IVs because he showed up with my mother, my husband and my little brother to wait by my bedside with me. After a while I started to itch very severely in reaction to the antibiotics, my face and chest were turning red, and the nurse had to bring me wet cloths. Eventually they stopped the IV, and by about 12:30 or so, they carted me off to the OR.
The nurses and physicians made every effort to keep me relaxed and answer any questions. I tried to be as helpful as I could with setting myself up, but before I knew it, they had the mask over my face and I was fast asleep.
I woke up in recovery to the sound of voices. I opened my eyes and I could see it was nurses standing over me, although I couldn't make out faces. My mouth was sand dry (it felt like I had been eating sand, literally. I asked in sign language if I was ok. I got an affirmative answer, but I heard the nurses mumbling to each other "I think she's speaking sign language, do you know what she's saying? I don't." I grabbed her hands to get her attention and asked if my father was ok, although I could have asked if my mother was ok, I don't REALLY speak sign language that well. She said yes, and I fell asleep again. The next thing I remember, my mother and my husband were standing over me. I'm not sure the sequence of events, but I was in so much pain, the tears were falling, but I tried not to cry. When my mother walked away, I broke down. I'm not sure what my husband was thinking, but he wiped my eyes and swabbed my mouth. It was about 8:30 when I woke up. My family hung around until about 11pm. They wanted to keep me in recovery until they ran my labs again, then they had to get my room ready. I got to my room about 3am or so. But from there I was kept awake with the nurses coming in constantly to check my vitals.
My day started at 8am when my nephrologist came in and told me I'd better get up and walk around....or else. At about 10, I did, suprisingly. It was painful, but not unbearable, and although I couldn't stand up straight and had to walk very slowly, I made my way up the hall to my fathers room, and around the hospital floor.
My recovery went uphill from there. I was able to go home that saturday. They gave me a ton of meds to take home, anti-fungal, anti-viral, anti-bacterial, prilosec, stool softener, blood pressure meds. But I never needed the blood pressure meds, my bp has stayed below 120/80. From there it was only up. I'll talk about my recovery at home in the next post.
The surgery itself was completely uneventful. I arrived at 9am, and immediately they had me change into a hospital robe and PJs. About 20 minutes after I finished changing, my father had arrived, and showed up in the waiting room, already changed out of his cloths too. We waited for what seemed to be another 15 minutes before a nurse arrived and took me to an exam room for one final exam and blood draw. From there they moved me to "holding" where they started the IV of antibiotics I would be needing for the surgery. My father apparently needed no IVs because he showed up with my mother, my husband and my little brother to wait by my bedside with me. After a while I started to itch very severely in reaction to the antibiotics, my face and chest were turning red, and the nurse had to bring me wet cloths. Eventually they stopped the IV, and by about 12:30 or so, they carted me off to the OR.
The nurses and physicians made every effort to keep me relaxed and answer any questions. I tried to be as helpful as I could with setting myself up, but before I knew it, they had the mask over my face and I was fast asleep.
I woke up in recovery to the sound of voices. I opened my eyes and I could see it was nurses standing over me, although I couldn't make out faces. My mouth was sand dry (it felt like I had been eating sand, literally. I asked in sign language if I was ok. I got an affirmative answer, but I heard the nurses mumbling to each other "I think she's speaking sign language, do you know what she's saying? I don't." I grabbed her hands to get her attention and asked if my father was ok, although I could have asked if my mother was ok, I don't REALLY speak sign language that well. She said yes, and I fell asleep again. The next thing I remember, my mother and my husband were standing over me. I'm not sure the sequence of events, but I was in so much pain, the tears were falling, but I tried not to cry. When my mother walked away, I broke down. I'm not sure what my husband was thinking, but he wiped my eyes and swabbed my mouth. It was about 8:30 when I woke up. My family hung around until about 11pm. They wanted to keep me in recovery until they ran my labs again, then they had to get my room ready. I got to my room about 3am or so. But from there I was kept awake with the nurses coming in constantly to check my vitals.
My day started at 8am when my nephrologist came in and told me I'd better get up and walk around....or else. At about 10, I did, suprisingly. It was painful, but not unbearable, and although I couldn't stand up straight and had to walk very slowly, I made my way up the hall to my fathers room, and around the hospital floor.
My recovery went uphill from there. I was able to go home that saturday. They gave me a ton of meds to take home, anti-fungal, anti-viral, anti-bacterial, prilosec, stool softener, blood pressure meds. But I never needed the blood pressure meds, my bp has stayed below 120/80. From there it was only up. I'll talk about my recovery at home in the next post.
Monday, March 3, 2008
I saw my doctor on TV
My husband told me about a news story where this 21 year old kid needed a kidney transplant, and his best friend wound up being the donor. I'm not sure what made this particular story newsworthy, but they mentioned that they had been out of touch for 8 years and made contact through facebook. Anyway, I was watching the story, and low and behold, it was the same hospital when I'm having my surgery. It was also my doctor that performed the transplant, so they interviewed him at a press conference on channel 7 news I think. My husband said it gave him hope for me, after seeing both of the guys looking spry and healthy. Just over two weeks until I get my new kidney. Compliments of my wonderful father.
Friday, February 15, 2008
Happy Birthday to me!
Today I'm 27 years old. Time flies sooo fast, I feel like I blinked and skipped 11 years. Yes, I haven't aged a day past 16. I'm so happy with how far my life has come, and where I am. I have so much to do, a lot of stuff I want, but I feel like everything is just going by in a flash. Sometimes things seem so surreal, because they never stay the same long enough to be reality.
You don't know its passing until its already gone by. Then its too late to do anything with it.
I've had the flu all week, then my husband caught it, he's had a fever for a few days. So maybe this birthday will be quiet. I do have a great night out planned tomorrow with all my friends, so hopefully I'll be well enough for some partying.
I'm at work today too, only because I feel like I spent enough time home alone, when I was unemployed! I'm proud to have this job, so I don't mind spending my birthday here.
Ok, back to work! (yeah right)
You don't know its passing until its already gone by. Then its too late to do anything with it.
I've had the flu all week, then my husband caught it, he's had a fever for a few days. So maybe this birthday will be quiet. I do have a great night out planned tomorrow with all my friends, so hopefully I'll be well enough for some partying.
I'm at work today too, only because I feel like I spent enough time home alone, when I was unemployed! I'm proud to have this job, so I don't mind spending my birthday here.
Ok, back to work! (yeah right)
Monday, February 11, 2008
March 18
My transplant surgery has been scheduled for March 18. I have to go in some time the week before to get some follow up tests, and I have to have my doctor fill out a form from the department of labor for my job, saying that i really do need the surgery, and how long i'll need to be out for.
I also got a letter from my insurance company saying that they have appointed a rep to follow my case and offer me guidance and support when i need it. I have a feeling i'll be needing it.
That's all I know right now.
I also got a letter from my insurance company saying that they have appointed a rep to follow my case and offer me guidance and support when i need it. I have a feeling i'll be needing it.
That's all I know right now.
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