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

Processes, Processes.....

Yesterday, I had to get up a little early to start my day. Normally, I wouldn't mind so much, but yesterday was Columbus Day. A glorified holiday in the banking world. Its a day that all the bankers and post office workers get the day off, while the rest of the world works. October is the beginning of a series of these little holidays for those who work in a bank. Making this the perfect time of year to be scheduleing so many tests and trips across town to the hospital.

My appointment yesterday was two-fold. I was to turn in my second round of pee jugs (which also means bloodwork-gag!) and I was to have my visit with the social worker. After my last visit with Mark -the renal donor coordinator- he told me I was down to the last few schedulings. He told me I would meet with the social worker, then the psychologist, then Nathanial and I would meet with the surgeon and the nephrologist to schedule THE day.

I wasn't quite sure I needed to meet with a social worker. Actually, I didn't even know what the social worker's role was. Nathanial told me she was a super sweet lady and I would like her. I honestly haven't met one person that works in the renal department that I haven't liked. But, I'm getting off track now. I had to be in the renal department of the hospital by 8am. Driving there takes about 30 minutes during rush hour plus I had to consider parking and walking through the crazy parking garage and getting to the 6th floor. And anyone who knows me knows I HATE being late to anything. I decided to leave the house around 7:15 which meant the kids were on their own for getting on the bus and getting themselves out the door at the right time. That isn't too much of a big deal for them. They have had to do that several times lately due to all of my testing and appointments. On a side note, the kids haven't complained one single time. They are the best little cheerleaders! They always give me extra kisses and hugs in the morning when they know I am having a day faced with needles. And then the first thing out of their mouths when they get home that evening is always "how did the doctors go?". They are just as excited to have Nathanial better as the rest of the family.

I arrived at the hospital at 8:03 according to my car, but I always have my car clock set ten mintues fast to trick myself into always being early. Drives Geoff crazy!! By the time I got up to the renal office to meet with the social worker it was right on the dot, 8 o'clock. Beth Smith, the social worker, came out to greet me. She was a tiny little brown haired lady that imediately made me feel comfortable. She couldn't find an office for us to meet in so we wandered up and down the hall for a few minutes looking for an open space. All the while, my pee jug was splish-sploshing around in my bag. We found an open office and she told me to make myself comfortable. Basically, her job for the day was to give me a sort of interview to deterimine if I really was willing to be Nathanial's donor for all the right reasons.

She asked me questions about financial issues. She asked me questions about my kids feelings about the surgery. She asked me how Geoff felt. She asked me how long I had thought about doing this. She asked me how my employer was going to handle my leave of absense. She asked me who was my support system and who would take care of me after the transplant. She talked with me about what it was that happened to Nathanial to get him to where he is now. She asked me what I would do if it turned out that the transplant didn't work. All these questions and topics were discussed over the course of about an hour. Apparently she approved of my reasons behind why I am doing this for Nathanial, because at the end of the interview she said when the transplant team met and they asked her for her 'yay' or 'nay'on continuing with the procedure as me being the donor, she was going to give me a resounding 'yay'.

YAY! One more obsticle down!

After visiting with the social worker I was sent to the lab. The lady who works the front desk from the lab now knows me by name. 'Hi Hilary', she greeted as I walked (as slowly as I could) through the door of the lab. I sat my bag down and pulled out my pee jug to walk over and give to her. I was sick and tired of hauling that stupid jug around with me everywhere for the last 24 hours so that was at least a good thing! She had me scribble down my height and weight and what time I started and ended collection. Then I had a seat to wait for the BS. BS= blood sucker.

The idea of me getting blood drawn doesn't panic me as much as it did even a few weeks ago. I'm actually very proud of myself for how brave I was yesterday. The BS came to call me to the back room and my stomach didn't even turn like it normally does. The nurse was a very funny guy this time and cracked a lot of jokes. He was young and energetic and very different than the nurses I'm used to. As he was poking around looking for a good vein I mentioned that I was still bruised from the last time they drew blood. He told me he could use a different vein if I wanted him to, but I declined the offer and told him just to use whatever vein was going to be the easiest for him. He said back to me,'do you really mean that? I can use whatever vein is easiest for me? Because my patients tend to get a little uneasy when I tie this rubber strap around their neck." See what I mean? He was funny! ....and if he thought for a second that he was going to use a neck vein of mine to get blood out of he wasn't just funny....he was CRAZY too!!

The blood drawing went well and I was out of the hospital by 10am to go enjoy the rest of my Columbus Day holiday. My next appointment is with a psychologist tomorrow. I guess they don't want to use mentally unstable people's kidneys?? Either way, she is the last person I will see prior to actually scheduling the transplant!! My kidney is anxiously awaiting his new home!

Until next time~
Hilary

Going Green

Typically, when you hear someone say they are 'going green' it means they are going to start using earth friendly methods for everyday activities. They plan on changing their old light bulbs for energy efficient ones. They are going to ride their bike more and use their car less. And, if they aren't already, they are going to start recycling. How fitting is it then, that the kidney donor ribbon is green?

Today as I was leaving the renal transplant floor of St Francis, I noticed a cute little quilt on the wall that somebody had sewn for the department. The quilt had different sorts of green material all stitched together to make a green "donor" ribbon. It occured to me that there are probably a large number of people out there who don't know what it means when they see someone wearing a green ribbon. We all know the yellow ribbon is for our troops. And the pink ribbon is for breast cancer. And we all remember red ribbon week at school to keep kids off drugs. But I'll bet few realize that when they see a green ribbon, it is in support of kidney donation.

Yesterday at mom's, as we were all sitting around eating lunch, she pulled out her little spool of green ribbon. Mom wanted us all to make little ribbons out of the spool and safety pin them to our shirts. What a GREAT idea!! We all wore our ribbons around the rest of the day. I have to say, it gives me a kind of proud feeling to own a green ribbon. I plan to wear my little green ribbon to death over the course of the next few months. I plan to get a green ribbon t-shirt. And I plan to get a green ribbon magnet for my car. I truly plan on Going Green.

Urine My Heart, Urine My Soul

My mom is worried sick. When we met with the nephrologist and the kidney donor coordinator a couple of weeks ago, she was teary almost the entire meeting. I don't blame her....as a mother myself, I know worrying about your children comsumes 90% of your life. I can't fathom if two of my three kids were going to be having major surgery, in the same month, on the same day, at the same time!! My mom doesn't handle stress well anyway. My dad is the calm one in moments of stress. He just acts goofy and tells bad jokes :) But he keeps my mom grounded and calm-er when they're together. Unfortunately, I just found out my dad is getting ready to leave for about a month for work......which means he will be gone when Nathanial and I have surgery.

I don't know how this will work out exactly for my mom. I'm very worried for her on that day. She will have my three kids to keep her company in the waiting room. She'll have Kristian, my youngest brother, to keep her company. She'll have my husband there with her. And I'm sure she'll have my granny Doris also. But she won't have my dad....her rock.

I know my dad, and I know dad will make every effort to make it for part of the day somehow. His job sends him all over the country and when he's on a 'mission' he can't just call in for a personal day. Even when his excuse is that his daughter AND his son are both going to be having major surgery that day. I know it will kill him not being there as well. Do you really think he will be focused on work that day? Hardly. Fortunately, I don't think dad will be too far away for this mission. I just hope they go easy on dad that day and let him leave a little early or something.

You know, really, when it all comes down to it, its really my parents fault that Nathanial and I will both be in surgery at the same time. They only have themselves to blame. Mom and dad are the ones that ALWAYS made me share with my brothers when we were younger. All the time as a child I was told to share. Share, share, share. Sometimes I even had to share dumb things like my Barbies! I would whine about how the Barbies were mine and they were in my room so why should I have to share with Kristian when he came in and wanted to play. (yes-Kristian used to want to play Barbies with me!) We would have to share our toys in the playroom..... and share the Nintendo...... and share our snacks.... and share our blankets when we would camp in the tent in the backyard. Mom and dad bred us to share. So when I hear someone make a remark on how brave I am, all I can say is "my dad always told me to share".

~Hilary

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.