Wednesday, March 31, 2004UNC Chapel Hill Comprehensive Transplant Center
UNC Chapel Hill 1st live donor (adult) tx in NC 1998 began program in 1996
Since 1991 over 500 tx
291 adult liver transplants & 52 pediatric
1 year survival rate for peds is 92%
UNC is one of 10 centers nationwide studying live donor tx (adult to adult)
1997 1st ped live donor to donor tx
Less risky to donor when giving to child- don't have to take as much
Post-surgical problems for donors can include infection, pneumonia and leaking bile, which can require further surgery
Robert S. Brown, Jr., M.D., M.P.H., is Medical Director of the Center for Liver Disease and Transplantation. Trained in gastroenterology and hepatology, Dr. Brown was a transplant fellow at the University of California, San Francisco, where he trained in pediatric and adult liver transplantation under Drs. Jack Lake, Nancy Ascher and Jean C. Emond. As an attending hepatologist at UCSF, Dr. Brown cared for more than 200 patients before and after liver transplantation. In 1996, Dr. Brown earned his Masters of Public Health degree in outcomes research from UC Berkeley, and became medical director of the liver transplant program at the University of North Carolina, Chapel Hill, where he was instrumental in building that program and conducting important research on the clinical and cost outcomes of liver disease.
Under Dr. Brown’s stewardship, the UNC liver transplant program grew to become the largest in North Carolina and among the largest in the Southeast. More than half of all liver transplants in North Carolina were performed at UNC-Chapel Hill, and referrals to Dr. Brown for transplant evaluation grew steadily from eight per month at the start of his tenure to 40 per month.
I am going to the dentist today. Consultation for having my wisdom teeth removed. They will most likely have to cut out.
EJ did the strangest thing this am. He got up and came to me (*no good am or anything) just told me to take my shoes off. My 1st thought was he is going to kiss my feet. Is he having a seizure or something? Has Ham & Cheese took over his mind???? I said, "Why"? He said, "just take em off". His eyes looked ok. Ham & Cheese wasn't there. So I decided to humor him. He did indeed kiss my feet. I'm thinking NO Only kiss the feet of Jesus!! He said, "I am so sorry. I did not take my shower last night". "OK just don't kiss my feet," I said.
I got a blessing yesterday. My step MIL bought 100 med bottles and 35 caps for Savannah. It was like Christmas! I can't wait to throw out the old bottles and start using new PLUS have a back up supply! WOOHOO
Stan didn't threaten to quit work yesterday. Phew. He is having strange conversations with the guys at work though. He wanted to know why we never had any fun in bed like Eric & his wife does. Whatever...
Well, the kids call but I will be back at some point today...
Tuesday, March 30, 2004EJ has choir today. I don't feel like taking him. I thought I would be cleaning for Marlena today but she has to save her $ for CH next week. Anyway, I had already ask my sister to take EJ to choir for me so I could clean for Marlena. I think I am going to let her take him anyway. I feel like I am using her but man.. Mentally I am getting very tight & tired. I need to be home & get things ready. I still haven't worked on my list of questions & I know if I wait to long I won't be able to think of any. Found out that Savannah possibly & EJ definitely has to be pre-med for teeth cleaning. I have to call & schedule that today and schedule my extractions for my wisdom teeth. I can no longer sleep on my sides anymore. Kills my back. I have got to see a doc. I told Ron & Marlena last night that we are seriously considering a TX. They a supportive & offered to be tested. I don't think Marlena can because of the cancer & Ron's heart wouldn't hold up. It's the thought that counts though. I can't believe the change in me, but ya know I always said God would have to give me the OK about it and He has (at least for this 1st meeting). I wasn't expecting it this soon if ever! Isn't it wonderful & awesome how God can change our desires. Until next time...
what decade does your personality live in?
quiz brought to you by lady interference, ltd
Thursday, March 25, 2004When I was little I would put myself to sleep by day dreaming. I would always day dream about my wedding. I would picture my gown and how white it was. I would see all the beautiful lace and the most gorgeous train! I remember doing this almost every night. After I got married I would day dream about meeting my prince in shining armor. There would be no drugs, no drinking & no beatings. He would be completely taken with me and want to be with me every moment. After my divorce the dreams became focused on materialistic things. A car, clothes, just anything trying to fill the void in my life. After I got what I had my eyes set on I would move onto another materialistic dream. After a few years I met Jesus and I would go to sleep at night reading my Bible. Shortly after, I remarried and was happy. My day dreams soon turned to the twin boys who were on there way. What they would look like, how I would dress them, how I would paint one of their toe nails so we could tell them apart. All the typical stuff. I didn't have dreams for them to be successful, famous or high in society. I wanted them to be best friends. I would be watching them have a conversation with each other and how they reacted to the other one and I would be so proud! After their death, and for the past 6 years, my day dreams keep me awake at night. I cry during the day. I hurt and get angry. My day dreams are a rerun now. I replay my whole pregnacy and their birth. I think if I had done this then things would be different. If this test had been done, why didn't the doc check that, who missed the prenatal screening, what if, what if. I replay the moment that the doctor who now helps care for Savannah told me. How he took me and Stan in a room with a couple other doctors and how he calmly explained to me what was wrong and then how I had to have him repeat, "There's nothing we can do." How I ran out of that room and collapsed into my husband in the hall. How that stupid social worker wanted me to go into another room so other parents wouldn't see me. The Saturday before they died I told Stan I had always wondered what my purpose in life was. I told him I knew what it was. I was to care for those 2 boys that God had given me. Only to be taken 4 days later.
Today I started dreaming a new dream. I couldn't quit. I normally never ever let this dream come near me but today I did. I have been dreaming about taking Savannah to a restaraunt and asking her what she wanted. No scales to weigh the food with. No tube feeding. If she didn't eat then no big deal. If she cleared her plate and wanted 2nds, fine. Introducing her to a bowl of cereal. What kid doesn't like that. And how about a candy bar!! No more worrying about brain damage and running to the hospital on the spur of a moment and then counseling the docs & nurses and guiding them with her care. Getting rid of the foreign object coming out of her belly and the lines running through her neck to her heart. What a life she would have. And then the thought would enter if she didn't make it, I would leave. Just leave. Get EJ and go. Start a whole new life somewhere away from everything that reminded me of the past. And then I think I could never be away from my family but then could I stand to be around them. My mom would call this projecting. Yeah maybe, but I like this dream. I want it to come true.
Wednesday, March 24, 2004I am so tired today. Fatigued. Don't really know why unless it's just the whole period thing. Savannah & EJ went to the dentist today. EJ has 3 cavities. 1st time in about 6-7 years that he has had one. They wouldn't clean his teeth because of his heart murmur. I couldn't remember if he was suppose to do the pre-med or not. Savannah was scared... Naturally. Overall her teeth look good. She has some soft places that will turn to cavities quick so I have to keep an eye on them. I have to check with her doc to see of she needs pre-med because of her port-a-catheter. We went to watch EJ. I thought that would help Savannah to see her brother lay back in the big chair. The nurse in there got an attitude with me because Savannah wouldn't them clean her teeth. She said, "My boy is only 2 and he has had his teeth cleaned twice! I'm just one of those moms that takes control and makes my kid do what he is suppose to." Well, if I hadn't been so tired or if I had been in a bad mood that girl would have gotten a piece of me. Long story short I told her Savannah has had so many surgeries & is in & out of the hospital so much that she gets a little afraid when she sees someone new with gloves & a mask on. (she even cries when she sees me with them on). The nurse went out to get xrays & came back apologizing. It ended up we have both buried children and she jumped on me without knowing our circumstances. She apologized until we walked out the door. Jodi, an online friend of mine posted a nice story about that same thing. We don't know what people have faced or might be facing when we cross their paths. It's best to smile and nod.
Stan still doesn't know anything about his pay yet. Hopefully we will find out soon.
Got the appointment today with the liver doc (can't remember the technical term) who would/will be following Savannah before & after TX. The co-ordinator & a social worker will be at the meeting. They might do some blood work while we are there. Might as well, Muenzer will be. So I will be in CH from April 5th - 8th. Amy, Savannah's new nurse is working out great so far. Her house burnt down in December and they lost everything. She has 3 kids. She is always so happy! Seems genuine. I wish I could smile and talk about tragedies without melting and take the lesson for what it is or was.
I ordered some cala lilies & fox glove today. Can't wait to get them in the ground! Well, Stan will be home soon. I need to go get Savannah on the house.
Heart of Gold
What is Your Heart REALLY Made of?
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Monday, March 22, 2004What a weekend! I don't know if I should blame it on Satan or PMS! I was very ill Saturday. My mom offered to keep the kids that night so me & hubby could go out. We never turn that down. Then Stan's dad wanted to come out. Told him we had plans and he got all upset. Then Stan's mom wanted us to come to her house to grill. Told her the same & she got all huffy. Then she called needing me to send something Savannah could eat. I have tried & tried to get her to keep a bag of tator tots. I told her what kind and how many to cook her. No weighing just count them. I have made it very simple but she can't or won't? Who knows. Then she won't eat in front of Savannah. I was already ill so I went & got Vanna brought her home did meds and fed her myself. It gets so aggravating. I mean, it's hard enough to keep things here for her. I can't stoke everyone else's house too. So I got calmed down over that and we went out and had dinner. Stan drank a little bit too much and we when we got to Walmart he almost flipped out. I parked and he said wait a minute. The car in front of us had a young guy & girl in it. They started kissing and he says lock the doors and get out of here. I looked at him and said leave Walmart or get out of the car? He's freakin out. He says there 2 queers in front of us kissing! I get him calmed down & he sees that it is a guy & a girl. Anyway, he said that he & the guys eyes met and he could tell that guy was trouble. Stan says he can read peoples eyes & that people talk to you with their eyes. I don't look at people that much. I don't care what they are doing or if they are looking at me. He says its smart to know who's around you and what they are doing. I just think he takes it too far. He was car jacked about 8-10 years ago and had the soup beat out of him. I think all this stems from that.
Sunday morning I almost didn't go to church. That was definitely satan because I enjoyed the service very much. After last nights service I ended up having to apologize to my mother-in-law for being ill with her Saturday. Today Stan is finding out if he will get a pay increase for his new position. He says he's walking out if not. He can't do that! We can't afford that. He will never find another job that he can tolerate and make the $ he's making now. He can drive me up the wall sometimes.
I still haven't heard about EJ's physc ed and nero physc testing. Will call & bug them about it. Savannah's new nurse seems to be doing great- so far.
I normally am a bright & happy person, loving bright colors. I look at this template and realize I picked it during a time in my life that I am not so bright & happy. My posts are reflecting that too. I will cheer up soon and be happy again.
Friday, March 19, 2004OK. I just updated Savannah's page with ease. I guess because I have been writing there a while. I'm still feeling my way around this whole journal online. I want this to be a release fro me and a place where I can be honest without fear of anyone reading it lest I be judged. I'm also a people pleaser. I have issues. No one in my family knows about this except for Angi. I'm sure she will be reading it as I do hers. No privacy for you chick! Anyway, I don't have to worry about Angi, she knows when to keep her mouth shut. There are a few people I don't want to read this -period, and I guess after I get over that fear I will be more comfortable.
I made the call today. A call I have been trying to make for over a year now. I wonder if I will keep the appointment? I am so scared. It's not like I'm doing it. just getting more info. That's all. Why do they have to have Savannah there if we aren't actually going through it yet? It's very scary to even think about it. I have to breathe and not project. Just info. That's all. The closer it comes time for our trip the more nerve wrecked I get anyhow. I have a fear of dyeing in a car wreck. If my whole family is with me it doesn't bother me as bad. Maybe we would all got together that way. EJ is begging to go this time. Especially since it's going to be a 3-4 day trip. I will let him go. He hasn't got to stay in the Ronald McDonald house yet. I need to call them tomorrow and get on the list. I hate being gone that long. It is so hard o pack for Savannah. The things that she needs for her health are only available at my house. If I forget something I can't go to the store or even the hospital to get it. A lot of her things I can't pack until we are leaving because I use them.
This is a short intro to myself & family. I have been married to my wonderful butt hole husband for a little over 6 years. We have 3 kids between us. Two boys, Zack & Luke in heaven, & Savannah who is 3. EJ, "my" son is 13 and I haven't seen his father since I was 12 weeks pregnant. I don't ever see or talk to my father nor do I want to. More about that later. My mom is the most precious & deserving person I know. Talk about keeping the pieces together! My 23 yo sis is immature and pushy but I love her to death and she means well. Just still young. My 32 yo gay brother lives in FL. with his partner. I hope they don't go to San Diego & get married lol. My aunts, uncles, cousins etc are all distant. I live on a hill along with my husbands family. Good security but nosey!
Wednesday, March 17, 2004Ok I am on a new mission The ad in this template drives me nuts. Be back soon I hope!
Today was Rhonda's, Savannah's nurse, last day! yea She really would get on my nerves following me around instead of Savannah. I mean come on. This is respite care for me. A new nurse will start Friday. Can't wait to see how she does.
Stan has called me 3 times today telling me he is about to walk out from his job. Last Friday he was put in a different position as front man for service & parts. He knew it was a stressful job before he took it but wanted to climb the ladder. Now I get to listen to him complain everyday I guess. EJ has had a really hard time thinking for himself today. I told him I didn't think we were ever going to have a good day again. Savannah had great fun @ speech & OT today. Always wears her out but the trip to Donalds for fries afterwards perks her up a little. She has been asleep for an hour or so. That's good because I can play on here! Ok I have about an hour before the hubby gets home so I am going to go clean up!
Tuesday, March 16, 2004Ok. My best friend discovered blogger & blogs and loves me enough to have shared this great info with me! I can't wait to get started. I mean getting all my feelings out of me. I use to keep a journal and then Stan, my husband found it and laughed at me. The entry he read was very serious and about our relationship. This was 3 years ago and I have only written maybe half a dozen times since then. I am really tired & still have to figure protein, tube feed and all that fun nightly stuff but I had to get started! I was thinking about it all day today!
When I got home tonight Savannah had just dozed off. I know this because she dropped her sippy cup a jerked it back to her mouth. I laid down beside her and held her watching her sleep. I kissed her and said I love you so that she would know I was home. EJ met me outside as usual. He always does that. Then 10 minutes later he was asleep on the couch. Stan was busy playing his game so I made dinner. I am so glad I finished this paint today. I am ready to be at home again. Stan is too. He said "you need to be here where you belong"...? Just 2 days ago he was saying how much he wished I could work. Men... Ok I have to go do my chores which includes a few more tweaks on my blog of course!! And then it's night night time for me. I hope my back doesn't hurt me tonight.
"Don't cry because it's over.
Smile because it happened."
-Ted Geisel (Dr. Suess)
Today I Feel...
(not anymore since blogging
came into my life!)
saved by God's grace!
Old Pieces03/01/2004 - 04/01/2004 04/01/2004 - 05/01/2004 05/01/2004 - 06/01/2004 06/01/2004 - 07/01/2004 07/01/2004 - 08/01/2004
Other PiecesSavannah's Journal
In Memory Of My Boys
Read about kids living w/ UCD's
McKayla's tx journal
YaYa Sisterhood in Christ
Future PiecesLiving Donors Online
Ronald McDonald House
Other People's PiecesAhhhhhh, relief
Tribulations of an American GI in South Korea
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