Well, by now most of you know, the transplant is not going to happen Tuesday.
Its kinda hard to write about this and not be emotional. I mean, we were admitted. We were sent home with our papers and our perscriptions and our 'after care' instructions. When I went back to work after being admitted, everyone from the bank was wearing their little green ribbons for us. I had my list of things I needed to pack for the hospital. The kids' teachers knew what was going on and they were getting the kids homework ready for them to be gone on Tuesday. WE WERE DOWN TO THE LAST MINUTE! ......and then the email came from my coordinator explaining things may be delayed. And then I saw I had a voicemail on my cell phone from Nathanial........I knew it wasn't good news.
Apparently, the doctors here in Wichita didn't fully understand the complications of having Nathanial as a patient. He's not your average kidney patient. He needs infectious disease specialists and blood pathologist specialists and neprologists and a bunch of other 'ists' that I can't even remember. I thought the doctors were acting rather cavalier about him all along. I was concerned that everyone on the transplant team was checking me out to death and not hardly even contacting Nathanial. But then again, I thought maybe it was just because I was so close here in town that they all knew me.
Nathanial will be here in Wichita again tomorrow. He is visiting with a long list of doctors and specialists and he is going to have his bone marrow tested (gag!). And after an exhaustingly stressful day for everyone in the family, I am hoping we have more answers. Its no fun to log onto my facebook and see my time-counter that says "two more days until transplant". It makes me cry. It was no fun to go to church today and have everyone say "oh Hilary, its almost here! We'll all be praying for you Tuesday" and then I have to explain the whole story again. Everytime I explain it, I start crying all over again like a little baby.
And Nathanial, on the other hand, is acting like this is no big deal! I admire his strength and his faith so much. I'm the one whining like the world is going to end on Tuesday and he's all like 'oh well, this is good. They'll fix whatever is going on and THEN we'll do the transplant. No biggie!' He's awesome like that. Its totally normal for him to be awesome like that. And its totally normal for me to cry a lot when things don't go my way. Thats why he deserves to have this kidney. And SOON!!
So please pray! Pray pray pray pray pray. There's a plan here--and none of us know what it is yet--we just have to have faith!! I am believing that this is just going to be a minor setback. I am going to believe that by Christmas Nathanial will have his new kidney. (because I was going to use that as my gift for him this year. lol) I am going to believe that by all these new doctors becoming involved with Nathanial, he will be even healthier than we ever thought! I am going to believe that there will be no more complications and operation kidney transplant will once again resume!!
~ Hil
Showing posts with label kidney transplant. Show all posts
Showing posts with label kidney transplant. Show all posts
Sunday, November 15, 2009
Monday, November 9, 2009
My Hero
Before our story wraps up and before I am under the influence of any drugs I feel like my blogging requires a dedication to my hero. While everyone is busy telling me how brave I am and what a great sacrifice I am giving.....while everyone is saying prayers for me and Nathanial and trying to do all they can to help us out during the next couple of weeks.....while everyone hugs me and says 'bless your heart', a silent hero has been standing in the shadows supporting me throughout this entire process.
My hero just cleaned out the guest room last week so that my granny would have a room to sleep in when she comes to stay with us. My hero has been to almost every doctor appointment with me regarding the transplant. My hero put money in all the kids' lunch accounts so I don't have to worry about packing lunches every morning after surgery. My hero has been there to hold my hand and rub my back for all of my tests and proceedures. My hero, well, he's really the reason I'm able to do this. He is my rock.
I'm emotional today. I know the stress is starting to get to me. I keep doing that thing where I think "next week right now I will be....." and then I get weak feeling and anxious. Its dumb, I know. This is the week we have been waiting on for months!! And now, NOW I decide to get weirded out?! It doesn't make sense.
Last night, Geoff just lay beside me in bed listening to me talk about the things I was excited about and the things I was scared about and all the things I laugh about. He rubbed my back and listened, really listened, to all that was on my mind and all that was troubling me so that I could go to sleep. How selfless is that? And then, he cracked a joke about how funny it would be if, when I was coming out of the anesthsia, he put on a white owl mask. (have you seen the trailer for the new movie "The Fourth Kind"? Where people are abducted by aliens and every night they see a white owl outside their window prior to the abduction? FREAKY!!!!) I love how he listens, but then knows just the right time to make me crack up and forget all my troubles. Its hard to find a more genuine soul in this world. Someone who always places your needs before their own. Thank you, Geoff, for being my all. Thank you for being there even when I'm bitchy (and Lord knows, those days are many). Thank you for buying me pudding when I want pudding and for getting me a tanning package because I wanted to be tan for surgery. Thank you for listening to me sing all around the house because I sing like a musical when I'm stressed. Thank you for not throwing out my favorite old pair of green sweat pants that you detest (they're going to be SO comfy after surgery!) And thank you for listening to me and really hearing what I say. I love you.
~Hilary
Footnote: Dad, don't even THINK about getting a white owl mask. I know this is what you are thinking and it would NOT be funny to anyone. This would be like when you and Nathanial came over to watch BlairWitch at my house and left little piles of rocks on my porch in the dark that night after you left.
My hero just cleaned out the guest room last week so that my granny would have a room to sleep in when she comes to stay with us. My hero has been to almost every doctor appointment with me regarding the transplant. My hero put money in all the kids' lunch accounts so I don't have to worry about packing lunches every morning after surgery. My hero has been there to hold my hand and rub my back for all of my tests and proceedures. My hero, well, he's really the reason I'm able to do this. He is my rock.
I'm emotional today. I know the stress is starting to get to me. I keep doing that thing where I think "next week right now I will be....." and then I get weak feeling and anxious. Its dumb, I know. This is the week we have been waiting on for months!! And now, NOW I decide to get weirded out?! It doesn't make sense.
Last night, Geoff just lay beside me in bed listening to me talk about the things I was excited about and the things I was scared about and all the things I laugh about. He rubbed my back and listened, really listened, to all that was on my mind and all that was troubling me so that I could go to sleep. How selfless is that? And then, he cracked a joke about how funny it would be if, when I was coming out of the anesthsia, he put on a white owl mask. (have you seen the trailer for the new movie "The Fourth Kind"? Where people are abducted by aliens and every night they see a white owl outside their window prior to the abduction? FREAKY!!!!) I love how he listens, but then knows just the right time to make me crack up and forget all my troubles. Its hard to find a more genuine soul in this world. Someone who always places your needs before their own. Thank you, Geoff, for being my all. Thank you for being there even when I'm bitchy (and Lord knows, those days are many). Thank you for buying me pudding when I want pudding and for getting me a tanning package because I wanted to be tan for surgery. Thank you for listening to me sing all around the house because I sing like a musical when I'm stressed. Thank you for not throwing out my favorite old pair of green sweat pants that you detest (they're going to be SO comfy after surgery!) And thank you for listening to me and really hearing what I say. I love you.
~Hilary
Footnote: Dad, don't even THINK about getting a white owl mask. I know this is what you are thinking and it would NOT be funny to anyone. This would be like when you and Nathanial came over to watch BlairWitch at my house and left little piles of rocks on my porch in the dark that night after you left.
Monday, November 2, 2009
Dear Kidney,
We need to have a talk. I want you to know I love you very much. And I don't want to upset you in any way. But I need your help. Well, actually, Nathanial needs your help. You see, he's my little brother. And every since the very first day he came home from the hospital, I have felt kind of protective of him.
I remember as a kid, when mom and dad would tuck us into bed and we shared a bedroom. We would still whisper and talk after they went back downstairs. Sometimes we would throw a little stuffed animal back and forth in the dark. We'd laugh when it would accidentally hit one of us. We'd get rowdy and sometimes forget how loud we got when we were supposed to be sleeping. Pretty soon, the hall light would flip on and Dad would come up and yell at us for not going to sleep like we were supposed to. I would always feel bad that Nathanial got yelled at because usually I started it. Another time I remember when Nathanial kept using the word 'damn'. Mom got so mad that he wouldn't stop she finally washed his mouth out with soap! I felt awful that he had to have his mouth washed out with soap, and I immediately ran upstairs and licked the soap myself to see how much he was suffering. And one time at church, when one of the bigger kids was picking on Nathanial, I chased that little bully all over the church kicking and trying to hit him and telling him he'd better not pick on my little brother!! --and I think I scared him off.
Feelings don't change as an adult. When I see someone staring at Nathanial because his nose is gone, I feel rage surge through me and I want to go tell that person off. When I hear a curious little kid ask questions about Nat's nose, it saddens me. The only difference now is that I am an adult and I have to control myself to some extent. I can't chase people down that stare and kick and hit them. I still feel protective. Only now, I feel helpless also.
When Nathanial was hospitalized a few years ago, I felt the most helpless I ever have in my life. There was my little brother...unconscious, feeding tube in his side so he could eat, breathing tube in his neck so he could breath, blood cleaning machine hooked to his veins so he wouldn't poison himself and die. Living by machine. He was mangled looking....his lips and nose were shriveled and black/purple. As were his fingers. As were his ears and the backs of his hands. His legs from the knee down looked like a corpse that had been rotting for some time. His arms were tied to the bed so he wouldn't thrash around and yank out any tubes.
It was literally the most heartbreaking feeling in the world.
And I could do nothing to help him.
Nothing.
I have never cried harder. I have never prayed more.
So, you see, kidney, this is where you come in. Its not that I don't need you....its that he needs you more. This is the one thing that I can do for Nathanial. This is the only thing I can do for my little brother that will help him. This will extend his life for years if it all works well!
Now, you'll have to act like a big kidney and really work hard in Nathanial. But you know its for a good cause. Nathanial will take good care of you and the doctors will check on you all the time to make sure you are enjoying your new home. And I'll still come around! Heck,once you get all settled and make friends with the other organs, I'm sure you'll forget all about me.
So, kidney, please do your best to help! Please, for the whole family and for everyone that loves Nathanial, work your little kidney butt off. Clean his blood like you've always cleaned mine. Help him to be healthy like the rest of us. We're all counting on you!
Love,
Hilary
I remember as a kid, when mom and dad would tuck us into bed and we shared a bedroom. We would still whisper and talk after they went back downstairs. Sometimes we would throw a little stuffed animal back and forth in the dark. We'd laugh when it would accidentally hit one of us. We'd get rowdy and sometimes forget how loud we got when we were supposed to be sleeping. Pretty soon, the hall light would flip on and Dad would come up and yell at us for not going to sleep like we were supposed to. I would always feel bad that Nathanial got yelled at because usually I started it. Another time I remember when Nathanial kept using the word 'damn'. Mom got so mad that he wouldn't stop she finally washed his mouth out with soap! I felt awful that he had to have his mouth washed out with soap, and I immediately ran upstairs and licked the soap myself to see how much he was suffering. And one time at church, when one of the bigger kids was picking on Nathanial, I chased that little bully all over the church kicking and trying to hit him and telling him he'd better not pick on my little brother!! --and I think I scared him off.
Feelings don't change as an adult. When I see someone staring at Nathanial because his nose is gone, I feel rage surge through me and I want to go tell that person off. When I hear a curious little kid ask questions about Nat's nose, it saddens me. The only difference now is that I am an adult and I have to control myself to some extent. I can't chase people down that stare and kick and hit them. I still feel protective. Only now, I feel helpless also.
When Nathanial was hospitalized a few years ago, I felt the most helpless I ever have in my life. There was my little brother...unconscious, feeding tube in his side so he could eat, breathing tube in his neck so he could breath, blood cleaning machine hooked to his veins so he wouldn't poison himself and die. Living by machine. He was mangled looking....his lips and nose were shriveled and black/purple. As were his fingers. As were his ears and the backs of his hands. His legs from the knee down looked like a corpse that had been rotting for some time. His arms were tied to the bed so he wouldn't thrash around and yank out any tubes.
It was literally the most heartbreaking feeling in the world.
And I could do nothing to help him.
Nothing.
I have never cried harder. I have never prayed more.
So, you see, kidney, this is where you come in. Its not that I don't need you....its that he needs you more. This is the one thing that I can do for Nathanial. This is the only thing I can do for my little brother that will help him. This will extend his life for years if it all works well!
Now, you'll have to act like a big kidney and really work hard in Nathanial. But you know its for a good cause. Nathanial will take good care of you and the doctors will check on you all the time to make sure you are enjoying your new home. And I'll still come around! Heck,once you get all settled and make friends with the other organs, I'm sure you'll forget all about me.
So, kidney, please do your best to help! Please, for the whole family and for everyone that loves Nathanial, work your little kidney butt off. Clean his blood like you've always cleaned mine. Help him to be healthy like the rest of us. We're all counting on you!
Love,
Hilary
Saturday, October 31, 2009
The Latest Setback
I'm getting more and more impatient by the day. In fact, for a couple of days, I almost forgot entirely about the transplant. Things are moving so slowly now. The hold up seems to be my possible gestational diabetes back in 2000. My doctor wanted to review my pregnancy records. However, my doctors from back then no longer practice (thank goodness) and their records disappeared. My doctor literally couldn't track my medical health any further back than 2004. Finally, this Thursday, my doctor was able to talk to a lady at Newman hospital in Emporia who thought they had my records on microfish. Remember microfish?? She spent most of her Thursday going thru film and printing off page by page anything she could find about me for the transplant center doctors to look at! What a gal!!
Then here is the email I received yesterday regarding what they found in my old records:
Hi Hilary. We discussed your history & lab results this am in our meeting. I explained the story - - Dr. Matt Reed , Dr. John Smith, and Dr. Charles Shield were comfortable with proceeding forward. The group voted that you could be a donor. After the meeting Dr. Mandayam expressed concerns to my manager with this decision. (He was not in the meeting to hear our discussion) He thought we should send you to a diabetes specialist for their opinion. I spoke with him this afternoon and explained the results I was able to find. He asked if we were sending you to a diabetes specialist. I asked why you should go if you never had an elevated glucose. He thinks we should discuss this with the diabetes specialist. I have not received a call back from the KU Med school regarding my message I left yesterday about an appointment. I will page the doctor to discuss your history with him. No appointment with him yet- -hopefully he will give an opinion which agrees with the other physicians to proceed. Mark
Mark Blackmore R.N., B.S.N., C.C.T.C.
Renal Transplant Coordinator
Transplant Institute Via Christi Health
I can't believe the possible gestational diabetes is causing this much havoc! Especially since I passed all the glucose tests with beautiful results that amazed everyone. I fully understand why the doctor is concerned, but everyone else is ready to proceed. Its just this one guy throwing a kink into everything....
So that is where we are. There hasn't been anything exciting to blog about. There hasn't even been anything boring to blog about. There just hasn't been ANYthing to blog about :(
~Hilary
Then here is the email I received yesterday regarding what they found in my old records:
Hi Hilary. We discussed your history & lab results this am in our meeting. I explained the story - - Dr. Matt Reed , Dr. John Smith, and Dr. Charles Shield were comfortable with proceeding forward. The group voted that you could be a donor. After the meeting Dr. Mandayam expressed concerns to my manager with this decision. (He was not in the meeting to hear our discussion) He thought we should send you to a diabetes specialist for their opinion. I spoke with him this afternoon and explained the results I was able to find. He asked if we were sending you to a diabetes specialist. I asked why you should go if you never had an elevated glucose. He thinks we should discuss this with the diabetes specialist. I have not received a call back from the KU Med school regarding my message I left yesterday about an appointment. I will page the doctor to discuss your history with him. No appointment with him yet- -hopefully he will give an opinion which agrees with the other physicians to proceed. Mark
Mark Blackmore R.N., B.S.N., C.C.T.C.
Renal Transplant Coordinator
Transplant Institute Via Christi Health
I can't believe the possible gestational diabetes is causing this much havoc! Especially since I passed all the glucose tests with beautiful results that amazed everyone. I fully understand why the doctor is concerned, but everyone else is ready to proceed. Its just this one guy throwing a kink into everything....
So that is where we are. There hasn't been anything exciting to blog about. There hasn't even been anything boring to blog about. There just hasn't been ANYthing to blog about :(
~Hilary
Thursday, October 22, 2009
Advanced Meeting
On Tuesday, I had my Advanced Meeting for transplant recipients. It lasted about an hour. My dad and I went to it. I recorded it on my personal little recording device, so my mom could listen to it later on.
We arrived at the hospital by 8:30 because I had a meeting with the wound care people first. They said the same things as usual about my stump. They wanted to try a different bandage this time. That didn't work out so well. It made my stump bleed. >:( We'll never use that stuff again.
Then, we had a bunch of time to kill before the transplant meeting at 12:30, so we went to visit my sister at her bank. I wore a mask everywhere I went that day, so I wouldn't catch anyone's cold. I also carried a little bottle of Purell with me to keep my hands sanitized.
After visiting Hilary, dad was hungry and Hilary suggested a donut place. It took us awhile to find the Donut Whole, but it was worth it. I stayed in the car while dad went inside. Apparently, he couldn't decide what to get, and since he was SO hungry, he bought 3 different donuts so we could try them all out.
I had never had a donut with bacon on it. It was alright. The maple topping covered up the bacon for the most part. I liked the chocolate rice crispie donut best, but dad preffered the triple chocolate donut. Notice a theme? I didn't get any glazed or anything normal because dad went in by himself. The bacon donut was a suggested by Hilary, the other two were dad ideas. My dad LOVES chocolate.
Anyway, then we returned to the hospital and took a nap in the car. We still had lots of time before the meeting. Finally, the meeting time came around and we went inside to attend.
The meeting was hosted by the same lady that did the first meeting I ever went to. She's friendly and really funny. She keeps you awake even when talking about boring stuff. Some of the meeting wasn't relevant for me as it was intended for people who don't have a living donor.
Most of the information was about life AFTER the transplant. We covered the massive amounts of medicine I'll be on, how many times I'll have to come back and meet with people, and the worst part...how many times I will have to come back and get a kidney biopsy.
A kidney biopsy means getting shot. OK, not a normal shot. First you get a normal shot of pain killer to deaden your side. Then, they take a giant version of an ear piercing gun and shoot you in the kidney. It's quick, but hurts. It goes into you and yanks out a little chunk of kidney that they can run tests on. I'm not looking forward to that.
Other than that, I just have to come and talk to them all the time. It means a lot of time in the car driving to and from Wichita. Lots of gas money, and time off work for my mom to drive me.
Well, that's enough for now. Next time I'll blog about the transplant process and what happens immediately before and after. Later! :)
Grace and Peace,
-Nat
We arrived at the hospital by 8:30 because I had a meeting with the wound care people first. They said the same things as usual about my stump. They wanted to try a different bandage this time. That didn't work out so well. It made my stump bleed. >:( We'll never use that stuff again.
Then, we had a bunch of time to kill before the transplant meeting at 12:30, so we went to visit my sister at her bank. I wore a mask everywhere I went that day, so I wouldn't catch anyone's cold. I also carried a little bottle of Purell with me to keep my hands sanitized.
After visiting Hilary, dad was hungry and Hilary suggested a donut place. It took us awhile to find the Donut Whole, but it was worth it. I stayed in the car while dad went inside. Apparently, he couldn't decide what to get, and since he was SO hungry, he bought 3 different donuts so we could try them all out.
I had never had a donut with bacon on it. It was alright. The maple topping covered up the bacon for the most part. I liked the chocolate rice crispie donut best, but dad preffered the triple chocolate donut. Notice a theme? I didn't get any glazed or anything normal because dad went in by himself. The bacon donut was a suggested by Hilary, the other two were dad ideas. My dad LOVES chocolate.
Anyway, then we returned to the hospital and took a nap in the car. We still had lots of time before the meeting. Finally, the meeting time came around and we went inside to attend.
The meeting was hosted by the same lady that did the first meeting I ever went to. She's friendly and really funny. She keeps you awake even when talking about boring stuff. Some of the meeting wasn't relevant for me as it was intended for people who don't have a living donor.
Most of the information was about life AFTER the transplant. We covered the massive amounts of medicine I'll be on, how many times I'll have to come back and meet with people, and the worst part...how many times I will have to come back and get a kidney biopsy.
A kidney biopsy means getting shot. OK, not a normal shot. First you get a normal shot of pain killer to deaden your side. Then, they take a giant version of an ear piercing gun and shoot you in the kidney. It's quick, but hurts. It goes into you and yanks out a little chunk of kidney that they can run tests on. I'm not looking forward to that.
Other than that, I just have to come and talk to them all the time. It means a lot of time in the car driving to and from Wichita. Lots of gas money, and time off work for my mom to drive me.
Well, that's enough for now. Next time I'll blog about the transplant process and what happens immediately before and after. Later! :)
Grace and Peace,
-Nat
My View (By Braden Sullivan, 11yrs)
This whole kidney transplant between my mom and uncle is a very difficult time for me.
My mom is always going to the nephrologist and I can only imagine the stress my uncle is going through. I always feel bad because my mother shows me her little dots from where she gets shots and tells me how scared she was, and I feel like I should have done something. (even though that was clearly impossible since I am always in school when she is getting shot with a long, bloodthirsty, needle) I am very stressed out almost all of the time, even though I don't have to do anything! But it is also VERY relieving, knowing that after this my uncle has many more years to go.
Nathanial (my uncle) is one of the biggest role models in my life. Me and him are like cheese and crackers. Every Wednesday, from when I was little to fourth grade (when we moved to Wichita) he would pick me up and we would have 'guys night'. Nathanial would take me to a movie, or play a board game,or try out a new video game or, well, you get the point. I have memories of Nathanial and I for as far back as I can remember. I have always looked up to him and seen him as not just my uncle, but also my best friend and my hero. I am very excited to find out that he will be around for a while now!
My mom has been there for me since I was, well, a baby. I feel very happy for her, knowing that she has the chance to do a great and honorable thing like donating a kidney. But i also feel bad for her, because on top of normal, everyday stress, she also has to think, "oh no, what if this happens," or, "what if that happens!?" This also stresses me out. But, I will have fun messing with her rib.(which she gets to keep...BLECHKKK!)
All and all, I am very excited to see how this turns out. With Every inch of my heart, I want Nathanial to get better. I miss the guys nights, and guy trips, and everything we used to do together. I know that if i couldn't pee, getting a kidney would be at the top of my agenda, so i know how this is exciting for him. I wish him the best of luck in the near future so that everything will go according to plan. I want him to know that I pray for him and my mom everyday so that this will be okay.
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