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

Before/After

Before the transplant happens, both Hilary and I will check into the hospital on a Thursday. I guess there's a lot of last minute work that needs to be done before the transplant. They do the transplants on Tuesdays.

I always have to go in early due to my Leiden Factor 5...my blood clot mutation. Because of that, surgery is more dangerous for me. They have to wean me off of my coumadin (blood thinner pills) and put me on a heparin drip (blood thinner IV).

Apparently, there's a lot of last minute work to be done. They'll have to put in the IV, make me repeat ALL of my vast medical history to them, and I'll lay around for a few days. I'm not sure what else is to be done.

The transplant will happen on a Tuesday. One surgeon will take the kidney out of Hilary, and the other surgeon will put it in me. We'll both be unconcious for this. WHEW!!! Hopefully, they'll knock me out before they insert the cathiter too. ;)

According to the surgeon, there's a 15 minute wait while they bring the kidney over to me. Apparently, as soon as they hook it into me, I start to pee immediately. So, by the time I wake up, I'll have been peeing for awhile.

Hilary and I are both going to request little buttons for morphin pain killer. They wanted to give me epidural, but I don't like that. I prefer the button pain killer, even though the said the epidural reduces pain better.

They say the donor (Hilary) will be in more pain after the surgery. The recipient will be awake, excited, and bouncing all over the place. You see, after the toxins are cleared from my body, I will get all my energy, both mental and physical, back in full swing. I'm excited for that. Hopefully, as soon as they see the kidney works, they'll take the dialysis tubes out of my chest. It would be great if when I woke up from surgery, everything was back to normal. Well, as normal as life can get for me at this point.

They say that both the donor and the recipient usually stay in the hospital for a good 5 days after the transplant. I might have to stay longer, but we'll see. After that, I have a busy schedule. Asides from being in isolation for at least 4 months, I have to visit the doctor a lot.

For the first month, I visit the doctor 3 times a week. For the second month, I visit the doctor 2 times a week. For the third month, I visit the doctor 1 time a week. Then I go back every few months for a biopsy.

Once Hilary is released, I believe she is free and clear to go home and lay around taking LOTS of pain medication and being waited on hand and foot by her children. :) (hint, hint, nudge, nudge)

Well, time is ticking away. It won't be long now.

Grace and Peace,

-Nat

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

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.

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

Time is tickin' away...

Everything is mostly done. It's only a matter of time before the transplant happens. To be quite honest, I haven't really thought much about it. I get nervous if I think about it too much. You know, going to the hospital, getting poked, pain medicine, etc... I think it's part of my body's natural defenses to shut down thinking about that stuff.

I came upon an insight several years ago when all this medical stuff started happening to me. I would literally make myself sick, worrying about stuff. The more I thought about it, the sicker I got. My stomach couldn't handle it. I would worry myself sick.

After talking to God about it and reading the Word, I learned something. This isn't my life. I have no claim on it. That's a good thing, since all my decisions seem to end up hurting me in the end. So, I turned it over to God. It's sad that I had to be so far down in order to look up.

Every day is a gift from God. I only exist because He wills me to exist. Every heartbeat happens because He desires it to happen. I live simply because He has decided that it is so. I turned my life COMPLETELY over to God that day. I told Him that I was giving up trying to take and claim what never belonged to me. It was up to Him to do with me as He pleased.

I know cognitively that He and He alone knows what is best for me. I had known this for many years, yet I hadn't ever completely given up that desire for control of my life. This was an INCREDIBLY freeing decision. It is amazing the freedom found in releasing control of that which was never mine to begin with.

Since that day, I have been through tremendous times of pain, suffering and near death experiences. I have yet to worry about any of it. It doesn't matter in the slightest what happens to me. I know God has a plan, and I know He will do it no matter what I think about it. I will live here in the shadowlands as long as He desires me to do so. When He says it is time for me to go home, there's nothing I can do to delay it. God IS in control.

I haven't gone home yet. This means that God isn't done with me here in the shadowlands. Apparently, there's something I still have to accomplish here. Don't get me wrong. Times have been hard enough that I have often prayed for death. I longed to be clothed with my "heavenly tent" as Paul put it. But God said, "Not yet." I still have work to do. I'm not completely sure what it is that God wants me to accomplish before I get to go home. It sure would be easier if He would just tell me, and then I could do it. Perhaps not knowing forces me to show more faith in His providence.

Anyway, I tend to ramble on forever. The kidney transplant is coming up soon, and I'm not the slightest bit nervous. I really don't think about it that much. I spend more time planning on what I'll be doing AFTER the operation and my body has more energy. I'm working toward a goal that I believe God has set before me. Something that my particular make up has built me to be able to accomplish. That is what consumes my thoughts and desires. Until next time...

Grace and Peace,
-Nat

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!

You Tube

I thought this was a cool video of a sister and brother kidney transplant. Plus, I love Casting Crowns (the background music) Enjoy!

http://www.youtube.com/watch?v=pLco6Ol5mfg

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

Liquid

In my last post, I told you all about the Renal diet. Some of you may have been wondering, what about water? My body cannot get rid of water. Dialysis takes off some of the excess water, but not all. Let me tell you a story.

When I was young, I didn't drink much water. Shoot, I didn't drink much of anything. When I was in college, some things happened that changed all that. No, it wasn't my 21st birthday. It was kidney stones. Ah, yes, kidney stones.

My father had a kidney stone several years earlier. I remember he was in a lot of pain, rolling around on the floor. I thought that I would NEVER have a kidney stone. I actually drank water. Dad didn't drink water. As the urologist would later explain to me, it's not so much what you drink, but how much you drink.

I ended up with kidney stones two different times. Once I got hit by one while at the Rennaissance (spelling?) Festival. I'm pretty sure I freaked out Toby and my brother, who had to pull over to the side of the highway and call an ambulance. I was on the grass, on all fours, weaving back and forth and puking constantly. A quick trip to a local hospital and an IV with lots of saline, and I felt much better.

Later, I got another kidney stone. This one I couldn't pass. I had a surgery, sort of. They knocked me out and then blasted my kidneys with sound waves in order to break up the stones, so they would be small enough to pass. They stuck an incredibly long, flexible straw up Mr. Happy in order to keep the passage way open when I passed the stones. That was awkward. For the next couple of weeks, Mr. Happy had a couple little strings hanging out the end of him. Why strings you ask? So when the tube needed removed, they could do it quickly. I go to the doctor. I stand over a trash can and drop my drawers. The doctor wraps his finger around the little strings and yanks!!! AAAAAAAAAHHHHHHHHHH!!!!!!!!!

Needless to say; after a couple of experiences like this, I started drinking a lot of liquids. Any of you who are familiar with my medical history will wonder how this compares to other things. Well, here it is. KIDNEY STONES ARE THE MOST PAINFUL THING I HAVE EVER EXPERIENCED. That's right. I'd rather have gone through all the other things if I could have avoided kidney stones. Shoot, the last kidney stone I had, not even massive amounts of morphin could lessen the pain.

Anyway, I forced myself to drink lots of liquids. I carried a big mug of water around with me to track how much fluid intake I had in a given day. I set goals and I drank constantly. Then, my kidneys shut down.

Now, my body can't get rid of water, so I 'm restricted to a small amount of fluid each day. That's right, after training for years to drink a lot, suddenly, I can't drink hardly anything. My nephrologist (kidney doctor) keeps wondering why I have such a hard time stopping myself from drinking too much.

I am restricted to 32 ounces a day. That may seem like a lot to some people at first, but try counting your liquid intake in a day. I bet it comes up to more than that. You see it's liquid intake. Not just what you drink. Soups, fruits and vegetables. Anything with liquid in it has to be calculated. This really throws off more eating options for me.

When it's cold and rainy and it's a perfect soup day...not for me. When it's the middle of summer and I'm outside burning up; a nice, cold, tall glass of water is out of the question. The worst part is winter. When it gets cold outside, my body dries out. I am constantly thirsty, but I can't drink very much. I have itchy, dry skin and constant chapped lips, but I can't do anything about it. I have to stay partially dehydrated.

Have you ever been seriously dehydrated? I have. It hurts. Your whole body just doesn't feel right. You hurt all over and can't figure out what's wrong. Luckily, it's happened to me enough that I know how to fix it. A quick trip to the ER and they stick an IV in my arm and shoot me full of saline. After about half an hour of fluid, I'm feeling decent again.

OK. I've gone on long enough for this post. I'll write again later.

Grace and Peace,
-Nat

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.

MORE Gathering....

This is Nathanial while on dialysis. Every Monday, Wednesday, and Friday he has to go to the hospital and do this for 3 or 4 hours. I can't tell much about the experience, but I had these pictures to share. Those tubes coming down his chest are the lines they hook the machine up to that dialysizes him. Blood is going out one side and going back in the other side. Apparently, having your blood taken out makes you extremely cold. He always has to have blankets with him and he has to dress warm. I believe he even takes warm fuzzy hats and mittens sometimes too, but I'll leave it up to him to describe the dialysis experience with you. I'm going to write a little about my day now.

This morning I woke up to my dog heaving. He was getting ready to vomit on my bed so I grabbed him and sat him on the floor to finish doing what he had started. Sick. Well, lovely to wake up to that on a Sunday morning! I asked the pups if they needed to potty and they jumped around all excited to run out into the cold for a few minutes. They're weird like that. Usually, my routine is to get up, turn off the house alarm, let the puppies out, and then I come in and go potty myself. Today I am doing more of the pee collecting for Dr. Shields. So after letting the puppies out, I had to get my tray and my jug before proceding. This threw my whole routine off!

I believe this is my last round of the pee collecting. Of course, if the doctor wants me to do it again, I will do it again. Whatever it takes. I hear this doctor of ours isn't one to mess with. If he says do it, we better do it. Period.

Today I have a lot going on, so today may be more difficult with the jug hauling. (I feel like inserting a bad joke here about how I'm used to carrying around big jugs) First we have church, then we are headed on a little road trip to Emporia to see my mom. Her birthday was Friday. I will need to call mom on the way and ask her to clear a spot in the fridge for my pee jugs. I'm sure she won't mind. Hopefully by next month right now, she is clearing room in the fridge to save jugs of Nathanials pee!

You have died of Dysentary

I'm not going to die of dysentary. I'm much more likely to die of dehydration or hunger. I promised in my last blog that I would write next about the Renal diet. I suppose you could call it a 'diet', I do lose weight. Mostly because I can't eat anything that tastes good.



All people on dialysis have to be on a Renal diet plan, though the extremes of the diet vary greatly from person to person. Basically, if you can't pee, your body fills up with toxins normally urinated out of your body. Dialysis attempts to remove both the toxins and the excess water, but it cannot do it all. So, you are to avoid certain foods that are high in these toxins.



There are LOTS of different toxins out there in LOTS of different food items. Shoot, even things that are good to eat for normal people end up being bad for dialysis people. The biggest toxin, and the one I struggle with the most, is Phosphorus. Phosphorus is found in ALL food. There is no way to avoid it, so I have to take special pills called 'phosphate binders' with every meal or snack.



As I'm eating, I take a chewable phosphate binder that removes the phosphate from the food I ate and turns it immediately into poop. That's right, poop. My body will then discharge the phosphates the next time I go to the bathroom. Which is usually some time in the next five minutes. That is why I can't go out to eat any more. My pills send me to the bathroom usually before I'm even done eating the meal.



There are lots of high phosphate foods. These are the foods I'm not supposed to eat very much of. This hurts, because I LOVE these foods. Here's a short list: Nuts, Beans, Okra, Chocolate, Pancakes, Biscuits, Waffles, etc... Then the big one...dairy products. That's right, all forms of dairy are high in phosphorus. Milk, Cheese, Ice Cream, etc... I LOVE drinking milk. I used to drink it every day. I LOVE ice cream. I used to eat it all the time. Don't even get me started on cheese. Cheese goes with EVERYTHING. Cheese goes ON everything. Cheese goes IN everything. Cheese makes up a major portion of my diet!



There is another toxin I struggle with: Potassium. This is something that's good for normies (what I call normal people). When I was younger, I used to seek out high potassium food and drink because it helped me avoid leg cramps. I used to get HORRIBLE leg cramps, so bananas and milk (that's right, it's high in phosphorus AND potassium), All Sport and other potassium high stuff was a constant in my life. Now, I'm supposed to avoid them.



This makes it MORE difficult to find appropriate food and drink. I LOVE fruit juices, but all forms of citrus are high in potassium. Orange, Grapefruit, Cranberry, etc... And it gets worse. That's right, even worse than having to avoid cheese. There are two food items that are super high in potassium that I love to eat and are in most every dish I eat: Potatoes and Tomatoes. Both these items show up as ingredients in almost every meal I've ever eaten. These are constant staples in my diet. They're cheap, diverse, and we even grow them in our backyard garden!



There is one particular thing I'm supposed to eat LOTS of...protein. Protein helps your body heal, so anyone who is sick or in the hospital is supposed to eat lots of protein to keep their albumin levels high. But, there's a problem. All proteins (that is meat, fish, eggs) are also high in phosphorus. It's a catch 22. Darned if you do, darned if you don't.



So, that's how the Renal diet works. It's incredibly annoying and stops you from eating most stuff that tastes good. I've never gotten a good report on my toxin levels because if one gets low (phosphorus) then the albumin is low too.



Good. Bad. It doesn't matter. I know that the build up of these toxins will end up killing me, but sometimes I just want to eat some cheesey mashed potatoes! :)



Grace and Peace,

-Nat

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

End Stage Renal Disease

For this blog, I thought it would be prudent to explain exactly what End Stage Renal Disease is like. It's kind of a scary name, End Stage Renal Disease. It's called End Stage because it's a disease that will kill you quickly if you don't do something about it. It will "End you". I've known a few people with End Stage Renal Disease who decided that they have lived long enough. All their affairs are in order, so they quit dialyzing. They die within one week.

Basically, End Stage Renal Disease means that your kidneys no longer function. Your kidneys are filters. When you drink liquids, the liquids pass through your kidneys where all the bad stuff is removed and sent to your bladder to be shot out of your body the next time you pee. People with End Stage Renal Disease can't pee. Since their kidneys shut down, all the bad toxins from the liquids, as well as the excess water, build up inside the body. If nothing is done about this, you will die. Isn't it neat the way God designed the body. All this stuff we find gross like peeing, pooping, farting, are actually your body's way to removing bad stuff. If you don't do it, you die.

Dialysis is what you do to survive. They take these big machines and hook them up to your body. There are several ways to do this. I have tubes sticking out of my chest. One tube is where they remove the blood and the other is where they put it back. Three times a week, over the course of several hours, the machine pulls blood out of my body, puts it through a filter and attempts to remove harmful toxins and excess water. Then, they put the blood back into my body through the other tube. Every time I go to dialysis, I lose about 6 pounds.

Unfortunately, dialysis is man's attempt on God's design and; therefore, doesn't work perfectly. All the toxins will never be completely removed from my body, so I am adversely affected. Over the past three years, you may have noticed many changes in me. These are almost all due to the kidney failure. Yeah, I went through lots of other stuff too, but the kidney failure has affected me far more than any other thing.

The build up of toxins in your body affects you physically, emotionally and mentally. Basically, toxins slow everything down. Physically, I have no energy. I sleep all the time, and don't do much of anything. Even menial tasks seem insurmountable.

Emotionally, I feel nonchalant, lazy, unmotivated. I get depressed easily. Sometimes I cry for no stinkin' reason. That's annoying! I'll just be sitting there, watching TV and all of a sudden, tears well up in my eyes! I'm thinking, 'what the heck! I have no reason to cry, but I am.' I'm not a big fan of that part.

Mentally, I have no energy. I can't keep thoughts in my head. I walk into a room and forget why I went there. I can't remember people's names or where I know them from. I still get ideas for youth ministry and my business, but I can't develop them. They don't have a hold on my brain any more. Being one of those uber thinkers, this is probably the most annoying aspect of this disease. I used to think all the time. I used to have a hard time shutting off my brain at night so I could fall asleep. Now, I can't keep thoughts in my head. I have to write everything I need to do down on paper, just so I remember to do it. Even simple things like eating a meal and brushing my teeth go on my to-do list.

Well, this blog is long enough now. Next time, I'll talk about diet. That's right. People with End Stage Renal Disease can't have a normal diet. Until next time, thanks for reading...

Grace and Peace,
-Nat

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.

SUCCESS!!

I would like to start out tonight's blog by letting everyone know I am not pregnant. Yes, yes, I know I have no uterus, but apparently it was still on the agenda for one of my tests today. So now that we have that cleared up we can proceed to how the rest of the day went. I'll start at the beginning....which was early, early in the morning....around 4:30 am.

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!

The Gathering

Well today I did the gathering. I tucked my little pee-gathering tray and my nice, big jug into a cutsie shoulder bag and off to work I went. I made sure to tuck plenty of extra Dillons sacks in my bag so I could wrap my articles discretely during my time in the bank. Right after entering the bank, my boss asked what all I brought to work. I saw his eyes light up.....I think he thought I came bearing food!

The collecting part of the day was easy. It was the part where I was supposed to drink extra water all day that was difficult. I naturally don't drink much. I have a couple of cups of coffee in the morning and I'm good until late afternoon. I don't usually even drink with meals. I am just not thirsty. As a kid, my mom would FORCE me to drink water. I remember spending a lot of time at the dinner table with a glass of water. Mom would tell me I had to set there until the glass was finished. Agony!

I went to the grocery store on my way to work today to buy some special flavored water.....hoping it would entice me to drink it. But there my grape flavored Aquafina sat, all day long, right next to my mouse, not being drank. I think I finished the first bottle around...oh.... sixish. Then I grabbed a bottle for the ride home. Only, instead I talked on the phone for the duration of my trip home. As I walked in the door I tried making myself guzzle the water so when Geoff (my husband) asked me how much I drank, I could smile and tell him at least two whole bottles. I knew that would impress him. I did manage to drink a cup of boullion tonight. And a cup of juice. Go me!

Tomorrow is the IVP. Gag. My knees get weak thinking about it. I was told after they hook up the IV, they put iodine into me and it gets really warm. I will feel light headed, like I might pass out while they run it through my veins and map the course of veinery (I just made that word up) that run through my kidneys. Right now, just typing this, I am shaking. I have to quit talking about it. Thank goodness Geoff took the morning off so he can go with me. Maybe he'll coax the inner tough-girl out in me. All I can say, is I am SO ready to have tomorrow over with!!

After all the tests tomorrow, I go see Mark and he gives me the final results. I don't know if my stomach is more tense about that or the IV. A lot of weight rests on the results of tomorrow. Hopefully tomorrow right now I can be blogging about the dates we are looking at for the transplant. No wait, hopefully, tomorrow right now I am already in bed for the night. But, earlier in the evening I hope to be blogging about dates. So until then...........to be ah-tinued. To be ah-tinued? Yes, to be ah-tinued. (inside joke)

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.