Monday, November 2, 2009
Dear Kidney,
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
Thursday, October 8, 2009
Planning Ahead

I found this very detailed picture that shows how the surgery happens. Isn't it great?! ...and kind of revolting, all at the same time? I have been googling nephrectomies (the official term of a kidney transplant). I'm just fine googling nephrectomy unless I push the 'images' button at the top of the page. There are some pretty graphic pictures you can find on the internet!! Dang! I found this one picture of a cat before and after picture blog. The cat had kidney disease. After the cat died, the owner took a picture of his diseased kidneys laying next to his little grave. What the heck!?
I have a reason behind my googling. I have to decide what kind of nephrectomy I want. Apparently I get a variety of surgeries from which to choose. The three main choices are the Open Procedure, Laparoscopic or the Hand-Assisted Laparoscopic. I have decided to rule out the hand-assisted option. For some reason, the thought of them cutting a hand-sized hole along my pubic bone for them to stick their hand up into during surgery just doesn't appeal to me. I invision laying on the operating table with the doctors arm INSIDE my body and it gives me the heebie-jeebies. I bet the doctors make jokes about it. I bet they stick their arm up in there and then pretend they're getting sucked in....and they jump around and say "oh no! Its got me!" for a good laugh. While that would make me laugh if I were a nurse in the room, being the patient makes it not so alluring.
I have to really weigh the pro's and con's of the other two choices. This reminds me of last week's episode of The Office, where Jim kept making Pro and Con lists. My mom always did this to make decisions when I was growing up. I think thats where I got if from. So below I have listed the Pro's and Con's of each option.
OPEN NEPHRECTOMY PRO'S
- long-term international record of safety
- potentially fewer abdominal complications
- shorter operative time
- earlier kidney function in the recipient (very important)
DISADVANTAGES OF OPEN NEPHRECTOMY
- possibly more severe pain after surgery
- 6-8 weeks of recovery before feeling back to normal
- larger surgical scars
ADVANTAGES OF LAPRO
- possibly less post-op pain
- minimal scarring
- return to normal activity sooner
- shorter hospital stay
- magnified view during surgery
DISADVANTAGES OF LAPRO
- slower kidney function for the recipient (very important)
- longer surgery time
- higher risk of damage to the kidney
- slower return of bowel function
- longer anesthesia time
Knowing all sides of the story will help everyone understand why I have ultimately chosen to have open surgery. The idea that the kidney will function faster in Nathanial during an open surgery is the biggest factor in my decision. Geoff and I have discussed this a lot. I keep making him read articles and lay in bed at night and talk to me about it. I'm sure Geoff is more than anxious for this to be over with! I was told that in an open surgery (which only lasts a couple of hours, by the way!) the kidney is taken out, rinsed immediatly with saline, and then they begin re-attaching the veins in the recipient within 5 or 6 minutes. And the kidney will begin functioning IMMEDIATELY upon being placed in the patient!! Think of this: Nathanial will have kidney function before they are even starting to sew him up if we go with the open nephrectomy. How awesome is that!? With the laparoscopic version, the surgery is far more problematic for the recipient. First off, the surgery is done through little holes with tiny little scissors and tiny little lasers all through a camera. This makes the surgery quite a bit more lenghthy...5 or 6 hours!! Secondly, they have to capture the kidney in a little baggie after cutting the veins and ureatha all of it and then pull the kidney through an incision. This places extra stress on the kidney and the kidney had more 'dead time' before being placed in the recipient. That, in turn, makes the kidney slower to function. It all makes perfect sense! And, with lapro, there is still a chance they will have to change their mind and do a full open surgery.
So, with all that being said, I'm sure everyone will agree with my decision of the open nephrectomy.

Tuesday, October 6, 2009
SUCCESS!!
I believe I blogged last night about being proud of myself for drinking a cup of hot tea and a cup of juice right before bed. Yes, I was doing great with the consumption of fluids, just entirely too late in the evening. I woke up at 4:30 and had to pee so bad I barely made it to the rest room. I did all the right things since I was still in my 24-hour pee collection stage. Even though I could barely keep my eyes open I put the tray in the potty, and then I stumbled through the dark house to find the fridge and pour my 'specimen' into the jug. I replaced the lid and then back to bed I went. No biggie. Until 6am, when I was supposed to collect my last specimen, but couldn't because I had just went at 4:30. I know this sounds miniscule (sp?) but I was really freaking because the renal coordinator had really placed some pressure on me to do everything just right. I was supposed to collect my last pee at exactly 24 hours after my first pee. If I screwed it up, then the whole test was shot. If this was the only issue, I think I would have been okay. But there was one other issue where I temporarily forgot I was saving ALL my pee and when I stepped into my nice warm shower......well.....
Geoff and I arrived at the hospital early enough that we could grab some Starbucks before proceeding to the death chamber, I mean...the lab. He got a nice white chocolate mocha (my favorite) and I was still on the clear liquid fast so I got hot tea. Actually, that was fine for me because I may have thrown up anything I ingested at this point. Nerves were killing me. We headed to the third floor where they smiled and greeted me and asked me to pee in a cup. Apparently, the gallon jug of pee I brought with me wasn't enough. I didn't balk, I have learned not to piss of the lab workers, as they are the ones in charge of sticking needles in you. Its best to be as sweet and pleasing as possible to anyone working in the lab. They gave me my hospital arm band and then let me wait in the waiting room just long enough to really think about everything. I got out my Bible and read a little bit to kill some time. Scripture always seems to calm me. I read a verse to Geoff that I had found the day before. It had struck me as very funny. When the people were wandering around in the desert with Moses and they were griping about only having manna to eat God replied to them saying something like "oh, Ill give you more to eat. I'll give you some meat. So much meat, it comes out your nostrils! Then we'll see what you have to gripe about". That has nothing to do with the waiting room, but I really like that little part of the Bible story. And it made me temporarily forget about the fact that just around the corner was a nurse waiting to suck out my blood with a giant syringe.
Once I was called to the lab a very sweet nurse with a whole handful of blood viles asked me to have a seat. Lol. Me....have a seat....in the lab. Good one. Geoff chuckled to himself while I quickly informed her of my habitual fainting when my veins are being probed and she was kind enough to have me lay on the table. I crawled up on the flimsy table/bed/thing with the paper lining and layed down. I was feeling pretty good until the nurse mentioned that she didn't have enough room to lay all my viles because there were so many to draw... GULP!!! She had TEN, yes TEN empty viles. Trying to be cool, I mentioned I could just scoot closer to the wall the bed was up against and she could lay the viles on the bed. I scooted right over and then noticed there was blood spattered all over the wall! I looked and Geoff and made eyes at him to look at the wall and he gave me his "gross" look back with his eyes and curled his lips. Too late to bring up the blood spatters at this point because the nurse was tying that horrible piece of rubberband like thing around my arm. She wanted me to make a fist while she tapped my arm to fish for a good vein. Okay, this is the part where my legs start jumping around uncontrollably and sweat starts popping out of my forehead like an NBA player. I will skip the next few details. She got the ten viles. I did not die.
On to the 4th floor. They call this section of the hospital the Heart Center. Sounds cute doesn't it? I was very disappointed when I arrived to find it was just a boring floor like all the rest and no one had thought to paint it all cutsie with hearts and love quotes. I knew this floor would be easy and I was right. I was doing an EKG on this floor. They made me take off my shirt and lay down. The nurse put little stickers all over my chest and one on each foot (the foot thing perplexed me, but I didn't want to ask her about it because the nurse seemed a little slow.....). She hooked wires to each one of the stickers and then turned on the machine for 10 seconds. A piece of paper came out of the machine and then we pulled the stickers off and I got dressed. Easiest part of my day.
Lastly, we made the trek to the radiologist. We checked in, sat in the waiting room and watched a little Rachel Ray, and then they called me. Geoff and I got up to head down the hall and the nurse turned to him and told him he could wait in the north waiting room or the west one but he couldn't go with me. WHAT!?! This test is the whole entire reason I needed him with me!!! This was the dreaded, evil test of doom!!!! He reluctantly took my purse and my bag and kissed me good bye while the nurse told him it would only be about an hour. She guided me to a little room where she instructed me to take off my cloths except for my panties and shoes and put on one of the oh-so-sexy hospital gowns. I stripped and made a joke about wearing my panties that said "lets make mistakes" on the butt. I thought it would be funny to leave the gown open in back so people could read it. The nurse didn't think I was funny. Thank goodness I only had that nurse for one x-ray, because a nurse with no sense of humor pretty much sucks. She just did my chest x-ray that lasted only about 20 seconds.
Once the chest x-ray was over it was time for the test. THE TEST!! The test I have been dreading since Thursday when I found out about it. The test I actually was worried about a year ago when we learned about it in some kidney class we took. Oh man. The closer I got to the IVP room, the weaker my knees got. The nurse had me take a seat while she went over a few details....was I pregnant, do I smoke, yada yada yada. The whole time my legs were bouncing around and I was sweating. Right next to her little piece of paper on a clipboard, was three GIANT syringes. When I say giant, I mean, the same size as the cardboard on the inside of paper towel rolls. Yes, that big. No exaggeration. She was explaining how they would hook up the IV and then lay me on this table and inject me with these iodine syringes (pointing to the giantuous ones on the table) and take pictures of my kidneys and bladder processing...blah blah blah. I really didn't hear much after the part about the IV. When my head started rolling around she got all big-eyed and asked me if I would be alright. She told me to take some deep breaths and mentioned something about not being comfortable doing my IV and she was going to go get another nurse to help. Great...two nurses. This typically means one is going to kind of hold me down while the other sticks me. As both nurses returned my hearing shut off and my eyes started going black. I mumbled that I needed to lay down and I just kind of dropped to the floor. I didn't faint, but I needed to quickly feel the nice coldness of the radiology floor. It was so nice and cool. And as long as I was down there on the floor, no one could stick needles in my veins. I know that doesn't sound very logical now, but at the moment it seemed the only option. The nurses were very nice and I totally feel bad now. I warned them though. I warned everyone, from the receptionist, to the radiologist in the first room, to the nurse walking me down the hall. They all knew what they were getting into ahead of time! The nurses got me off the floor and moved me to the table where the x-rays would be taken. They tilted the bed so my head was down and blood would rush back to my cranium. Apparently, that was their last ditch effort to keep me conscious. A cold rag was placed on my head as they explained that they wanted me to just relax for a little while and they would call in the IV specialist team to do the insertion. Right, relax, okay sure.
Actually, I did relax. In fact I almost fell asleep because the IV specialist team took about 30 minutes to show up. The tech was awesome and she was sweet and mild. She told me she does 100 IV's a day and she's very, very good. She didn't give me a chance to balk, she just walked right over, eyeballed a vein right off and wiped it off. I was praying the entire time and I think God was actually with me right then. Because as she told me she was administering the lidocane I didn't even feel the stick. In fact, I didn't hear her pull the paper off the IV needle (which I usually pick up on), I didn't feel her poke the IV in, and I didn't even feel her tape it down. No, that's a lie. I did feel the tape further down my arm near my wrist when she taped that. Her name was Mary Lee and she was an angel. I praised her and told her I was requesting her for the surgery day!! I have never in my whole life experienced a smoother IV insertion!!! Prayer works!!
They took the pictures of my kidneys working and my bladder filling and then they let me pee. Thank goodness!! I had all that hot tea from Starbucks 4 hours earlier, PLUS the IV fluids...I had to go!! Side note: it was so nice to just pee and not worry about aiming for a tray :) They took one last picture of my empty bladder and my day was done!!! I had made it!!! I was past the hard part!!!!!
Geoff and I went up to visit Mark and go over all my results. Technology is amazing. He had all my lab and all my pictures from the dye in my kidneys and everything in just a few minutes!! He showed me my healthy little heart. He showed me my healthy little lungs. He showed me my healthy little blood test results. He showed me my healthy little kidneys. And he showed me my happy little bladder. And he told me my tests all came out great. DID YOU GET THAT? He said my tests all looked great!!!!!!!!! Stress over! Operation Kidney Transplant ready for action!!!!! I meet with a psychologist next Wednesday and I meet with a social worker next Monday. I have one more 24 hour pee test just to make sure they are both conclusive of the same results. Then we meet with the nephrologist and the surgeon and the rest will be history.
All in a days work!