Stand Still

The days are dragging by as slowly as possible now that everything is up in the air. Today should have been my day three with no kidney. I should be in a lot of pain today and on a lot of drugs, feasting on hospital food and being forced to walk even though I would rather not. Instead I am still packing the kids' lunches and going to the bank all day. I'm still coming home and letting the puppies out and making dinner and running kids around. I still have this extra kidney. And Nathanial still has none.

Monday, Nat and mom came to town for a bunch of hospital tests to see what all was wrong with him and what all the doctors think they can do. Nathanial described one test as the most painful thing, next to kidney stones, that he has ever lived through. He was in so much pain when he came to our house it made me angry. He kept taking his oxycodone (sp?) and wincing everytime he tried to re-arrange his legs. He didn't sleep at all Monday night. (Although, Mace, our little black puppy, slept quite comfortably next to Nathanial in the guest room!) The next morning Nathanial was scheduled for another test, a cat scan, at a seperate hospital here in town. Conclusively, the doctors think Nathanial has pneumonia....even though he says he feels fine. They also determined his liver is enlarged and they want to find out why. While I am frustrated to not be done with the transplant right now, I am thankful that the doctors are giving Nat the attention he deserves now. Next Monday, the 23rd, the physicians have scheduled another meeting with Nathanial. They said, provided all the tests look okay, they may set a new date for a transplant at that time.

I'm not holding my breath.

In fact, I'm doing the opposite. I painted my nails again (I had all my polish removed for weeks in preparation for surgery). I started taking my Advil Sinus again for my headaches....the nephrologist told me that was hard on my kidneys. I am doing whatever I can to temp Murphy. Murphey's Law and I do this dance often. You see, when I plan and I have things ready to go.....guaranteed something will go wrong. So, when I don't plan, sure enough things happen that should have been planned for. There really is a method to my madness!

Let Down

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

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.

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

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

Please Sign Here ---->

Today I signed on the dotted line. I signed and initialed and signed and initialed and then the doctors signed and then the coordinator witnessed and then.....the deal was sealed. It was like signing for a mortgage.

And its official.

My kidney will be oh-so-gently placed within Nathanial very very soon.

My day started out very early. Geoff and I had to be at the hospital by 7:30. I had been fasting for 12 hours prior to the appoitment so they could test my blood sugar first thing. yay...more needles. What I didn't realize, was that after the initial blood drawing, they were going to trap Geoff and I in a closet sized windowless room for the next five hours with nothing more than a TV and two chairs. B-O-R-I-N-G! A lab tech explained that I would drink this extremely sugary drink (that tasted like orange soda) and then they would draw my blood an hour after the drinking. And then two hours after drinking. And then three hours after the drinking.....you get the picture. I don't mean to sound like a baby, but I am going to whine just a little. I have been sick the last two days...killer sore throat, headache, body aches...just yuck. So prior to todays visit, because I had to fast, I couldn't take any medicine. Also, this meant no coffee for me this morning. Me feeling sick and not having my morning coffee made for a very unpleasant and uncomfortable morning for me. And my poor husband was trapped in there with me! Not only was he trapped in the small, overly heated room with a grouchy wife, but the lab tech actually thought he was my dad! (Geoff had just a rough of a day as I did, bless his heart)

By 12:45 I was shaky and I needed food and cold medicine badly. The lab tech finished the final draw just in time for me to run down to the cafeteria and get a baked potato before heading back up to the sixth floor of St Francis. I have to admit, I was a little anxious to meet this doctor. I have heard he is quite the stiff, old fashioned type guy that doesn't like to BS. I felt quite the opposite upon meeting him. Dr Shields made Geoff and I feel right at ease. He first went through a flip chart that begun like this: Renal Failure Options. Option #1 Do Nothing = death. (note the picture I took of the lovely flip chart above) We went thru the proceedure and he answered all of the questions Geoff had for him. We told some jokes and I found out that when they remove my bottom rib, they will let me actually keep my bone for a souvineer!! HOW TOTALLY AWESOME IS THAT!?!?!?!!!!! I was a little surprised to find out I wasn't the first one to ask if I could keep my rib bone. I just have to think of a good way keep the bone after I get to take it home. I doubt Geoff will let me mount it and hang it on the wall. I dont think it would look good hanging around neck. Oh, I'll think of something....

After meeting with Dr Shields, we met with the neprologist who is very concerned about my gestational diabetes. Although, my glucose test came back almost perfect (even better than most normal people) he still had his doubts knowing I had gestational diabetes. He recommended that I see a diabetes specialist prior to the surgery so that he can look over my records and make a recommendation. Just between you and me, even if they say I am in a higher risk catagory for diabetes, it won't stop me. I've made it this far with no problems, I'm sure I can skip some sugar and exercise regularly and be just fine the rest of my life. But I understand, from a neprology side of things, why the doctor wants to at least educate me.

Its been a long day. And I'm so glad to be back home! Now I can take my cold medicine and then go watch my daughters concert and then try to get some rest.

Peace Out Bean Sprouts~
Hilary

All the Lose Ends

I don't have much to blog about today, but its been a few days since the last update so I'll fill everyone in. Nathanial is headed to Wichita today (face mask and hand sanitizer in tow so as to avoid swine flu!). He is attending his final 'Advanced Transplant' class in the transplant center at St Francis. The whole family attended one of these classes last year when we first started planning. The class is EXTREMELY uncomfortable. They talk about flank incisions, and they talk about getting a tube shoved in your pee hole, and they talk about the epidural, and they talk about medications after the surgery, and they do their best to really really talk you out of going through with it if you aren't a 100% dedicated. I remember getting grossed out enough that I lost my appetite--and, FYI, it takes a lot of work to make me lose my appetite!! I remember them going over some statistics of survival rates and things like that. They also talked about the financials of the process. So, today's meeting is a follow-up to that original meeting for Nathanial.

I believe Nat also meets with the wound specialist today. For those of you that don't know, back when Nathanial went septic a few years ago, he also lost half of one of his feet. His entire foot had turned a nasty shade of green/black with oozies coming out of it and mom and dad had to make the decision (while Nathanial was still in a coma) to go ahead and remove part of his foot to save the rest. He lost both of his calves and his nose and a few fingertips, but the major thing was his foot. His foot still gives him problems to this day. He had another surgery just a few months ago to shave off a little more of the foot bone and the doctor added some shark cartlidge to help the foot heal better. Apparently, when you don't have kidney function, you don't heal well from other illnesses. For three years, Nathanials foot wouldn't heal from the original surgery. It was very painful for him. He couldn't walk very far or for very long at a time. He had to keep his foot bandaged at all times and change his dressings often. It was all very sad. Then just a few weeks before my wedding is when he had surgery to add the shark cartlidge. We were all very impressed with how quickly he was up and walking after this proceedure. Now he has special little shoes that go around his stub to make him walk better! But back to my original thought--today he follows up with the wound care doctor for his foot. They have to make sure the foot is doing alright before proceeding with the transplant.

I don't have any more tests or meetings until Thursday. Thursday I have to take the entire day off work. So far, I have managed to just take bits and pieces of my work days off for all my tests and meetings. The bank has been really good about working with me on my schedule. This Thursday puts a bit of a kink in things at work because we have several people gone, but no one has given me a hard time about not being here. Everyone at work seems to understand, and even though they don't really know Nathanial, they are all cheering for him. I know its hard on people that aren't part of the family to really wrap their mind around how important this is.

I have been scheduled a glucose tolerance test on Thursday. I guess they don't usually do this test for the donor, but because I had gestational diabetes when I was pregnant with Corynne, they want to make sure I don't have diabetic tendencies now. Then just yesterday I got a phone call telling me that I not only get to meet with the Nephrologist Thursday, but I also get to meet with the Surgeon!!!! So that is HUGE news! On my checklist of things left to do, that completely wraps me up. I am hoping we get to schedule the actual date of the transplant Thursday! We shall see....and when I find out, believe you me, I will blog about it! ~Hilary

Roller Coaster

Yesterday I received a phone call from the transplant center. The call was from Clem, the receptionist, who just called to tell me that our coordinator had made an appointment for me on next Thursday (October 22nd) at 2pm to meet with Dr. Mandayam - the nephrology surgeon!! She told me the meeting was just for me, and that Nathanial was not going to be present, but she said to be sure and bring my husband. Weird, huh?

I couldn't ask too many questions because she was just relaying the message and didn't really know details. But I have a MILLION questions. Last I knew, we couldn't have our meetings with the surgeons until the last week of October. Then, for no reason at all, I have a meeting next week. And I am to bring my husband - curious.

I have these plethera (sp?) of emotions right now that I can't control at all. I go to bed and I am exhausted to the point of not even being able to keep my eyes open, but then I start thinking about things that are about to happen, and I can't get to sleep. I toss and turn all night long and dream about the surgery. I wake up and immediately google things about the surgery. Then I go to work and think about it all day long, completely ruining my focus behind the desk. I come home and search some more on google. THIS IS CONSUMING MY LIFE!

And its not because I'm nervous, I'm not nervous at all....I'm just anxious. I am ready to do it and get it all over with. I keep coming up with all these 'what if' situations....what if Nathanial's body rejects my kidney? What if I get a kidney infection in my only kidney in a couple years? What if they go in to remove my kidney and find something wrong with it and don't go through with the transplant? What if Nathanial gets sick between now and the transplant? What if, after the surgery, I get a cough and rip out my stitches with every sneeze? --these are the things that make me not sleep, and not focus, and not act like myself.

One minute I'm all giddy and I'm like "Bring it!" and then the next minute I'm thinking about the IV and my legs feel weak and my stomach gets upset. One minute I'm all excited about the thought of 6 weeks relaxing at home to recover, the next minute I'm in a panic about all the sales I'll lose out on at work. One minute I'm wondering why this process takes so long, the next minute I catch myself telling someone that its going so fast! I am a crazy person right now. Literally, a crazy person right now.

I have a plan for this next week. This week I am going to try and act more normal. I am going to quit daydreaming to the point that I don't even hear when the kids ask me a question. I'm going to quit calling my parents house three times a day for no reason. I'm going to do more around the house and quit wasting my time googling. And, by golly, I'm going to sleep!!

Get the Show on the Road

Now comes the hardest part of the whole ordeal for me........ waiting.

I'm done with the bloodwork (for the most part). I'm done with the urine collecting. I'm done with the xrays and the IV's and the radiologist and the therapist. I'm done with the social worker and the EKG. I'm done with the phone calls and the coordinating my schedule and the trips to the hospital. Now all I have to do is wait.

For those of you who don't know me very well, I'll fill you in. I'm not a very patient person. I tend to jump into things head first as quickly as possible. Dad used to have a saying - think first, then act. As often as he would tell me that, somehow I have always ALWAYS done everything in my entire life the opposite. I tend to act first and then think about it (after its too late). While I don't claim this as a very good method, I seem to have survived okay this far in life. I have gotten myself into a few messes.....I once sat our row of hedges on fire as a kid because, without thinking first, I was lighting and throwing fireworks into them. My friend and I once decided on our lunch break to go and get our hands pierced in the little fleshy part between our thumb and forefinger (not very convienant for a banker). I have had the cops call my parents in the middle of the night because I was using their vehicle, and without thinking, I parked it in a towzone while I went and partied. I once moved to Kansas City on a whim, without the financial ability to actually succeed up there, and had to move back only three months later. You get the point. I'm not proud of these things, but I'm drawing a picture here....

So yesterday as I was leaving the psychologist office, I was thinking to myself about how we could just have the surgery tomorrow if we wanted. I mean, all the tests are done. Nathanial is healthy now. WHY ARE WE WAITING?!?!?!? Lets get this show on the road already!

I get that its a process. I get that the doctors want to thoroughly go over my medical records before making the final decision. I get that Nathanial should attend one more of his 'advanced kidney recipient' classes. I get it! But at the same time....every day this is put off is another day things have a chance to go wrong. I don't want to be a debbie downer, but one can't help but think of Nathanials health. If he gets a cold, he'll be put in the hospital and it could delay things for weeks! If he gets an infection, same thing. What if I get H1N1 in the meantime!?

Here is the procession of what is left before surgery:
*my medical records have to arrive in the renal department and Dr Shields has to go over them
*Nathanial has to attend one more 'Advanced Renal Transplant' class (scheduled for October 20th)
*Mark, the coordinator, has to schedule a time that the surgeons can meet with Nathanial and I to decide on the actual date of transplant (I was told this meeting probably wouldn't take place until the last week of October-boo!)

Thats it! See how close we are now! OH man! Everybody please pray for Nathanials health between now and then pleeeeeaaaaaaase! In the meantime, I'm going to keep taking my vitamins and exercising everyday. I'm going to use the hand sanitizer and wash my hands everytime I shake someone's hand at work. I'm going to get plenty of rest and I'm going to eat my veggies. Hope that does the trick!

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

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.

Dental Work

Today I went to visit the dentist. Apparently, after you get a kidney, they put you on medicine that "dumbs down" your immune system. Your body can't fight off disease very well, and your mouth is a good source of possible infection. So, they send you to a dentist to clean your teeth and make sure everything looks right. I had been to the dentist a little over a year ago when we first started this transplant process, but that was TOO long ago. I had to go again.

Dad had to drive me to dialysis this morning and the dentist this afternoon because I couldn't walk well. Yesterday, I stubbed one of the few toes I have left. I stubbed it good. It hurt bad. Basically, I injured the one good foot I have left at this point. I couldn't walk very far and my toe hurt really bad.

Anyway, dialysis went alright and now I was limping up the stairs to the dentists' office. As soon as I got in the door, they put me in a chair and started working. I don't mind the dentists nowadays. When I was a little kid and mom and dad made me go to the dentist, I HATED it! Nasty tasting floride. Bad background music. Uncomfortable chairs... Nowadays, with all the medical stuff I've been through, the dentist isn't intimidating at all. Actually, I find the dentist office quite relaxing. All I do is lay back and close my eyes, they do everything else.

I don't mind the sound of the drill. I don't mind the sound of them scraping my teeth. It does annoy me when they hook their sharp little, metal stick on a tooth and tug on it. That's something I would like to do myself, but letting someone else do it just doesn't feel right. I guess it's a control issue. Like a lot of tender parts of my deformed body, I trust myself to mess with it, but not someone else. Stay away from Mr. Stumpy! >:(

I wasn't at the dentists' office for long. They just scraped me and then polished me. (I felt like a car) Then it was all over. That was the last thing on my list before the transplant. If the transplant doesn't happen for a couple weeks, I've got another meeting to go to, but that's it. It feels kind of weird to be this close to a transplant. I'm not looking forward MORE time in a hospital bed, but I would love to have working kidneys. I guess it's not long now.

Perspective

My sister, Hilary, started this blog and asked me to post stuff as well. We're getting ready to go through this transplant process for a kidney. My kidneys shut down 3 years ago and she volunteered to give me one of hers. Cool, huh? I thought so. I am so INCREDIBLY grateful to her, but you don't want to tell her that too much. It freaks her out!

Both her and I have been through lots of surgeries, so that's no worry for either of us. Shoot! I look forward to surgeries. Being an insomniac, I LOVE the knock out gas that they give you. I think that anasneeziologists (spelling) are my favorite doctors.

Hilary is freaked out by IVs. I'm not a big fan either, but I'm more used to them. Actually, I often look forward to IVs. Not the insertion process, certainly, but the results. Having an IV means instant satisfaction. If I'm dehydrated, I get water. If I'm in pain, I get pain killers. IVs, while annoying, bring the good stuff and make life so much better.

I'm excited to finally get this transplant thing done with. I'm eternally grateful that Hilary is going through all this for me. It is a very humbling process to know that someone would do this for you. I've had so much prayer and support over the last few years that I know I wouldn't have survived without it. It continues to this day. My family is amazing!

My Jugs

So........its about nine o'clock and I'm getting ready for bed soon. I have this dilema, because I don't know exactly how I'm going to hide these pee jugs at work tomorrow. As gross as this is, I have to save every last drop of pee for 24 hours starting tomorrow morning as soon as I wake up. I'm doing whats called a "creatinine test". You see, a few years ago, my little brother had several really bad things go wrong with this body which resulted in him having total kidney failure. He's been on dialysis for three years. Actually, this month is the anniversary of the hospitalization which caused his kidneys to take a permanent vacation.

Wow...three years. Three years of going to the hospital three times a week and being hooked to machines that take all of his blood out, clean it, and then return it to its rightful place.....back inside of him. Three years of multiple surgeries to remove and replace the 'plugs' that connect his veins and arteries to these machines. Three years of never getting to travel further than a days car ride from the hospital. Three years of what I can only imagine is pure misery. Of course, I don't pretend to understand what he's going through. I'm sure the things he's endured the past three years are beyond my realm of comprehension. That is why I am starting this blog.

I have completed some preliminary testing and have been determined a suitable donor for Nathanial (my brother). There are more tests to complete before we can actually schedule the transplant, but I am going to start sharing the experience through this blog starting now. I am going to post blogs, and I am going to ask him to post blogs. Together, we will document our journey throughout the kidney transplant process. I will post my perspective of things, and he will post his. And maybe, in a few years, we can go back and read this and have one of those "oh remember when" moments. Maybe other people in our same situation can read our blog and it will relieve some of their angst. Or maybe it will result in nothing more than therapy.

But back to my jugs. Because this creatinine test involves 24 hours of pee, and because I was gone most of the weekend, I have to start tomorrow morning. Which means hauling my not-so-discreet jugs to work. I think I can fit them in a bag to get them into and out of the bank. But I'm not so sure my co-workers want my bottles of urine sitting in the fridge of our break room. I will have to wrap them in some sort of larger bag....maybe a paper grocery sack that is stapled shut...before putting them in the fridge. Dilemma number two: do I tell my coworkers what is in the jugs? Or do I just let them think the fridge is a 'pee-free' zone. I mean, I don't want to gross them out, but I don't want to not tell them and have them find out either. I guess I will just cross that bridge when I get to it.

After the 24 hour pee collection process, I have a series of tests scheduled at St Francis with the lab. The renal donor coordinator (whom I love, by the way) is named Mark Blackmore. Mark has really been awesome . He says his sole job right now is making sure I'm safe. He makes sure I get all the rights tests so that if I am the donor, nothing goes wrong with me afterwards. I, for one, think that sounds like a really good idea! However, one of the tests he has scheduled for Tuesday seem like something out of one of my nightmares. There are the easy ones....the chest XRay and the bloodwork. There is the EKG and the AIDS test. There is the hepatitis test and the physical exam. But the one that gets to me is the IVP--the Xray of the kidneys, ureters and pelvis. Apparently, they are going to hook me to an IV for this test. There are only two things I am terrified of in this whole entire world. Those are: being abducted by an alien and IV's.

I am not just a little scared of Tuesdays tests, I am MORTIFIED. I will most likely pass out at least twice before they get the IV all connected right. I get nervous and I start shaking, making it very difficult for the nurse to insert the needle. Then, apparently, even my veins are nervous, because they always start rolling making it even more difficult for the nurses. Once, when I was in full blown labor, it took three nurses to hold me down to get the IV in my arm.....and then (mind you, I was in full blown labor) I fainted. I am tough in a lot of situations, but tell me you are going to shove a needle into one of my veins and I am a weinie. So, as you can conclude, I am a little less than excited for Tuesday to get here.

I will record more of my experience tomorrow. For now, I would like to leave one final thought for my first Organ Trail blog. A lot of people have remarked lately that I must be very brave. They have made comments like, "oh, you're such an angel to do this for your brother", or "what a great thing you are willing to sacrifice for Nathanial". While these comments are meant with the best intentions, it usually leaves me feeling a little weirded out. I compare it to walking past someone who is drowning. Even strangers jump into a lake to save someone who is drowning. Certainly, if it was your own sibling, one would jump in to save them! I am by no means a hero. I am by no means a brave soul. I am a sister who loves my brother and hates his suffering. I am human. And I am scared.