The Organ Trail

The End Is Near

2010-08-25T16:38:00.002-05:00

FINALLY, after 10 months, NAT has a new, approved kidney donor-ME.
My transplant coordinator called today and said I don't need the final test. My results have been so good that they approved me to give a kidney today with no further visits on my part required.
Now, we're back to NAT. He has to call his coordinator, see if another, fnal, round of blood work will be required, (He may need the blood work done again because of the recent transfusion. That means I may have to get a little blood done too but that's all minor medically.) While there, we'll visit the post-op guest house (mandatory), and he needs a final dental check since it's been over 6 months. Those 3 things being done, all that would be left is to schedule the transplant.
We hope to schedule his blood work and the visit to Mayo Guest House next week. When the date is set, he'll get the final dentist checkup and we're off to the races! That may not be as soon as we'd like. We have to set it around my work schedule and I'm working a LOT the next few months. Maybe the end of November or so, looks good. We'd be there thru Christmas but, hey, what a wonderful Christmas present for him! I won't even have to go shopping, I've already got what he needs.

Trudging On

2010-07-19T18:59:00.002-05:00

Sorry, we haven't been on in a long time but it's been a long haul and we're still going. When we last left our intrepid heroes, Steve was on a quest to lose 10 pounds, and get his blood work improved.
After a long, and hard fought, battle, Steven defeated the fat monster. It wasn't easy. The fat monster is strong and cunning (& has cookies). But, after 2 months, Steve defeated the monster by starving it to death. In the process, Steve lost 22 pounds and is still going (it least his waist is going). Like a Hydra, the fat monster has many heads and they keep growing back. (In myth, each time you cut off a Hydras head, two grow back.) Ice cream raised it's ugly head, chocolate raised it's ugly head, and many more but all were defeated.
Then came the 'test'. More blood sent to Mayo for evaluation. Saints be praised, it passed all standards. Yet, there is hesitation from the Lords of Mayo. What about your blood sugars? It was good. Your blood pressure? Good again. OK, all will be laid at the feet of Dr. Amer and he will hand down his decision on when to take the last test. Steve awaits with baited breath (or breath like bait but no matter.)
Steve hopes for early August. He is ready. But let's see how the other half of this dynamic dual is doing.
Nathanial (normally known as the 'NAT'), was fighting his own battles. First his hemoglobin dropped to dangerous levels. That battle was fought and is being won. Then a hernia cut off the blood flow to part of his intestine. Emergency surgery, 3" removed. Two days later, somethings wrong. Another emergency surgery to stop bleeding in his incision. Then a few days later, uncontrolled nose bleed. For 7 hours he fought that fight all the while bleeding out and into buckets while awaiting his THIRD emergency surgery in a week. Tired but triumphant, he survived again. Will nothing stop this man?
Now, recooperating at home, he rests for the next battle. One that he and Steve will fight as a team. When that will be? Soon, my friend, soon.
Stay tuned for our next episode.

Yes, but.......

2010-05-21T21:53:00.002-05:00

Here's the last word before I left Mayo today: Yes, I can donate a kidney but.......
(1) I have to lose 10 pounds,
(2) Start on some cholesterol reducing medicine, and
(3) Pass one more test in a couple months.

The devil in the details.
Glucose Levels: Went back down to normal but with diet and even more exercise they would be better.
Blood Pressure Levels: Are within limits but with diet and even more exercise they would be better.
Cholesterol Levels: Are only slightly too high, but if I take pills it'll help stop any further buildup in my arteries and with diet and even more exercise they would be better. (Anyone sensing a theme here?)
Kidneys: (Here's where the other test comes in) are fine. In fact, most people have one artery going to their kidneys, I have 2 going to each.
Mr. Right: (Yes, I've named them) has a little buildup of plaque on one artery but it's small and at where it attaches to the main artery so they can just cut it out at the buildup and NAT would have 2 clear arteries going in. That is great in case one clotted off, he'd have another.
Lefty: Has 2 arteries but one goes directly in and the other wonders off somewhere into my abdomen (a vast abyss). Plus, Lefty has some scar tissue. Therefore, they want to do a second test later to make sure Lefty is pulling his own weight and not letting Mr. Right do all the work.

Now, I talked to both kidneys on the way home and Mr. Right is fine with going. In fact he wanted to go to a younger body that wouldn't give him stones, build up plaque in his veins, and not have to live in fear of injuries that leave scars on him. He also said something about living a more exciting life in a younger body than I could provide any more and he feared if he stayed with me he'd end up in need of replacement since I still do things that could damage him too. (The Dr. said once I was healed I could return to Tae Kwon Do sparring!)

Lefty on the other hand said he was quite attached to me, literally. And, we earned our scars together so he wanted to stay where he was. He knows that chicks dig scars even if they are only visible to nurses doing sonograms, CT scans, and X-rays. He thought the scarring was Macho, and accused Mr. Right of being a wimp. Plus, he saw the video on how they are going to take Mr. Right out and he got a little woosy. (They burn away the connecting tissue with a laser type pen and yank him out by hand.)

All this was fine with the Dr. He wanted Mr. Right anyway although the final decision will be up to the surgeon after he reviews the pictures. (BTW, I tried to order copies of the pictures but they wouldn't let me. I thought both kidneys were very handsome indeed and I wanted a picture of us all together one last time.)

Now, as to where Lefty got the scars, I don't know. The Dr. said either a very serious illness or a deep injury. Well, I've never been seriously ill and I don't remember any deep injuries. The Dr. suggested maybe HS football injury that I just wrote off as a bruised rib or muscle. NAT thought it was probably from an old SCA wound. It's not a fresh scar so it is NOT from TKD. Lefty thinks NAT is right. I took some pretty vicious hits in SCA and the padding was not very professional or protective (a thick belt covered with a little carpet). I tend to agree but it doesn't matter now. I'm too old to be hit with large heavy rattan swords and am into being kicked in the ribs instead. At least I have professional (super heavy) padding now.

Gary, you are in charge of keeping me out of cake and ice cream on exercises. I've got to give up the sweets to lose 10 pounds. With Ellies great cooking, it's going to be hard to stay out of too much food at home too but I'm sure NAT will be watching my weight very closely to keep me on track. If all goes well, the kidney transplant is back on and looking good.

Mayo Testing Day 2

2010-05-20T18:54:00.003-05:00

I finished everything I was supposed to do today and tomorrow except for the final blood poke (doesn't 'poke' sound so much better than 'we're going to jab a long needle in your arm and suck out your life-giving blood'?). Then I have the final meeting with the Dr. who'll have ALL the results and make his determination as to what's next.

My views:
Mental Test: To all of your surprise, I can appear to be normal long enough to fake my way thru an hour interview. I know, I know, they just didn't know what buttons to push or it would have come flying to the surface.

Electra & Echo cartiagrams: They had misgivings but I told them I'd rather run on the treadmill than be chemically injected. (They kept saying "You're a little 'solid', you sure you can do that? I think they meant 'fat' but were trying to be PC.) Anyway, thanks to Master Hobelman encouraging me to work on my TKD even when I am gone, (he beats me if I don't) I am in good enough shape to not only pass the stress test, but to do fantastic on it. My heart is in great shape. It is not black and not '2 sizes too small' as some of you have accused me of. I can get my heart beat up to 160 BPM and go for 12 minutes without having a heart attack, passing out, wheezing and gasping for air, or causing an irregular beat. Yea, I was surprized too. I guess it was the lack of oxygen in Colorado that had me winded so easily. There is more air down here.

CT scan: I have no idea how that turned out. I asked for a 5X7 and a couple of wallets but they wouldn't let me look at the pictures. I do think the 2 young ladies kept a couple of them to admire for themselves though. People have said I'm beautiful on the inside? Well they've seen my insides now and if it was as beautiful as people say, why wouldn't they want copies?

Blood Tests: Don't know. I just know they keep sucking blood out and putting it into little bottles. I think they are so impressed with me they are going to clone me and that's why they are collecting so much blood. I go back tomorrow for ANOTHER blood draw. (Can you imagine, a million little cloned Steve's in the world? What a wonderful world that would be?)

Blood Pressure: I haven't 'blown a gasket' so that's good. My stat's are just a little high but within controllable limits. A bonus to being over 50 is they fudge the stat's a little for old people and aren't as picky. I was surprised since I thought my pressure would be up from lack of sleep. The stupid machine took 87 readings in 18 hours! I woke up every time it squeezed my arm off last night. I am SO ready to go to sleep tonight that I may not even be able to finish this bl..............zzzzzzz

Mayo Testing Day 1

2010-05-19T19:35:00.002-05:00

I feel soooo violated but, I'm still in the running. They have tested so much today and then, they scheduled 3 more appointments to go to. I'm going to have 2 more full days (where else can they inspect? Oh, wait, don't ask). Worse yet, I don't get to eat after 7 pm each evening and can't eat again until after 4 pm the next day so I won't mess up the tests. That's a 3 hour window and I can only eat so much in 3 hours.
Blood pressure-I'm wearing a constant BP gauge over night. I am not going to get any sleep. It goes off every 10 minutes all day and every 20 minutes all night. My arm is going to sleep from the constant squeezing but I won't be sleeping. My BP was a little high but I think it's because I am a little stressed from being here and being prodded, poked, and penetrated! Every time I see a needle going in or sucking stuff out, my BP rises. Wouldn't yours?
Blood work-10 vials this morning, 2 more this afternoon. More scheduled for tomorrow and Friday. Filthy blood sucking, Vampires! I would feel drained but they keep injecting things back into me too. (Contrast they call it. I thought my insides were already colored coded like in all of my old biology books.)
Heart tests- No need, I thought-I'm heartless (or so I've been told). Wrong, I've got one and they want pictures from the inside. (More contrast) And a lot of wire to hook up tomorrow and Friday. My heart must be big, they cover my whole chest, stomach, sides, and other places I didn't even know my heart reached. Maybe I have an enlarged heart?
Chemical results-They say to cut back on fats, sweets, lose a few more pounds (I lost 5 in the past 3 weeks but NOOOOOO, that's not enough) and exercise 5 times a week instead of 3. Really? It took TEN vials of blood to tell that!! Most people without Dr's degree's could tell that without 10 vials of blood and 2 more to be sure! People on the street pat my belly and tell me that. Why did I drive 8 hours to hear the obvious?
Tomorrow mental tests (I know what you are thinking. I am thinking it too.), heart tests (contrast), CT tests (more contrast), and some tests I can't pronounce but probably need contrast. (Don't these people have any contrast control?) If I survive, I'll blog more tomorrow.

Pass the Mayo

2010-05-17T08:29:00.002-05:00

Actually I'd like to pass the Mayo (Clinic) but it's something I've got to do to donate a kidney. I got the list of tests and procedures (fancy word for 'you won't like this') that they are going to perform to see if I can donate. Most of them have NOTHING to do with my kidney function. I think they just want to see how many embarrassing things they can do in a 3 day period.
And, they sent another urine jug to fill. Hello, I'm traveling 8 hours to get there! Now I'm supposed to carry a little jug with me every time I stop for a rest room break. I'm going to get some weird stares.
Most every test also says not to eat so many hours before the test. I've looked them over. Apparently I'm not going to be eating for 3 days because there is another test with fasting every day, sometimes twice! It's a good thing I've got enough built-in reserves to last several days.
The only thing I am concerned about is passing the blood pressure test. It's very close to normal but that's measuring with a home BP gauge. I've got to wear an 18 hour BP gauge while I'm there. Of course having invasive 'procedures' won't raise my blood pressure any!! They need a little thing like you measure tire pressure with so you can get an instant reading.
Hopefully all will go well and we can finally get this transplant over with and NAT can get back to normal. If we can do that, it'll all be worth it. Otherwise someone will owe me a dinner for the 'procedures'.

Moving Closer to D-Day (or K-Day?)

2010-05-02T21:34:00.002-05:00

Things are moving along, abet slowly. I got my urine tests results back from Mayo. (They were checked by Dr. I.P. Freely) They were clear and showed no signs that I would develope another kidney stone. (This last one was 20 years ago and I swore-never again!) But, they want to be sure.
They've scheduled my physicals at Mayo for May 19th. They'll take 2 days (they are VERY thorough). I get checked inside and out-literally. My blood pressure is the lowest it's been in years. If I can keep it down and if all else is well (and I pray it is), then we can schedule the surgery.
NAT's foot is COMPLETELY healed after 11 months of having an open wound. Now, after 3 1/2 years, maybe we can get NAT a kidney too and he can get back to a more normal life! (No dialysis, being able to pee, being able to walk without a walker or wheel chair, etc.)

Wheeeeeeee, it's time to Peeeeeeee!

2010-04-21T20:12:00.002-05:00

First let me say the post office stinks. Mayo mailed me the urine test kit April 9th by first class mail. It never arrived. They mailed another kid on April 15th by priority mail (2-3 days). It hadn't arrived by the 20th. They mailed another by FEDEX Overnight. It got here today along with the priority mail kit that was overdue. Now I have pot to pi$$ in.
I am anxious to take my jars of urine to the post office to return and answer their questions on if it's hazardous, dangerous, or liquid. Actually, they sent me another box to take to a medical clinic so they can mail it back for me. Darn.
I've been drinking water all day to get clean, fresh P for my test. I want it clear as Kaui water, not Kansas water. That would probably get me hospitalized if it looked like the Neosho. I have to go to Wichita tomorrow with NAT so I'll have to take a jug with me. That will be awkward. At least I didn't have to take it to work like Hilary did.
I never thought I'd be sharing my thoughts on urine on-line with people but it's part of trying to donate a kidney.
By the way, I need a name for my kidney. Sydney was already taken by Hilarys kidney so I need a good one for mine before I let him go. Email or facebook me with ideas.

The old man is up to bat

2010-04-13T22:18:00.002-05:00

After leading off as the designated hitter, Hilary struck out as the kidney donor. Yea, is was close but, again, the evil LFV rose it's ugly head and took her out of the running again. I was on deck and now I'm up to bat. That is just as well. It was always supposed to be me. I wanted to be the one to donate but Hilary got first bat. (For those of you following this blog, I am Steve Pearson, better known as Papa Steve. I am Nathanial and Hilarys father.)

I've already passed the feared LFV (Leydon Factor V) test. I don't have it. Yes, that surprized me too. I was ruled out by Wichita for too high of blood pressure. MAYO said that was not a problem if it was controlled and since I'm over 50, that's to be expected. They are more worried about my previous history of a kidney stone 20 YEARS AGO. They are mailing me a urine test to take and MAIL BACK TO THEM. (I can't wait for the Post Office to ask me if it's liquid, hazardous, or dangerous!)

If it shows I'm not prone to another kidney stone (& I've have been clear for over 20 years), then I'll go to Mayo for a complete physical workup to ensure I would be a good donor and would survive the operation without problems.

I don't think Ellie is too happy about this. She'll have to be the caretaker for both of us. Also, she'll be off work to take care of us after the op, and I'll be off work obviously for a while. Most donors are back to work within 3 weeks. Hopefully I'll be in good enough shape to get back to work (play) by then. At least my work (play) is not physically demanding.

I've taken over the blogging job too, and I like to talk, so expect to be kept up to date. I am not as funny a writer as Hilary, nor as well composed a writer as Nathanial, but I will faithfully keep you in the loop. Thanks for reading this and keep Nathanial in your prayers. Let's get this transplant done.

Mayo part 3

2010-03-16T00:34:00.002-05:00

My second trip to the Mayo clinic was at the beginning of March. I had to go back for MORE tests that couldn't get done last time. It was a good trip, despite having my groin cut open.

I got to meet the wound care people and they did this mist treatment to me. After a couple of days, my foot looked better than it has the past 10 months! :) We found a place in Kansas that also does the mist treatments, and I will be going there regularly until my foot is healed. I was also told to not put any weight on my foot. I'm supposed to lay around until it is completely healed. They said that walking on my stump was a big factor in it not yet healing.

The big test I had to do was a vein mapping. They told me they would cut open my jugular vein and pour dye into me and watch it on an X-Ray machine. Oh, and I would be fully awake the whole time! I was freaking out!!! They said I wouldn't remembe the procedure, and I told them memories don't scare me. Having my neck sliced open did! Long story short, they didn't cut into my neck...they sliced open my groin.

I don't wanna talk about it! >:(

Anyway, now I'm back in Kansas. They transplant will proceed AFTER my foot is healed, so that's the next project. I'll be going to a wound care clinic in Wichita 3 times per week until it's done. :) Yea for more travel! Most of my life is spent in a car.

-Nat

MAYO part 2

2010-03-14T19:45:00.002-05:00

My first trip to the Mayo clinic was in February of this year. I went for a week of testing, interviews, testing, meeting specialists, testing, getting poked and more testing. Every time I met a new specialist, they would order more tests. Every day I would get a brand new schedule with all the new stuff added to it. It made it hard to plan in advance for anything.

I met TONS of people and learned lots of new names (and forgot even more names). I explored the huge Mayo campus. It was suprisingly easy to get around, despite it being so large. Mayo connected to hotels, malls and basically the entire downtown area through a skyway system AND a subway system. The coolest part was the underground subway mall. We accidently found it. Apparently with all the subway corridors, many shops have opened up in them. Mostly eateries. The nicest section had a Subway, Dairy Queen, Caribou Coffea, Quiznos, a Christian Book store, several pharmacies, a children's toy shop, and lots more local stores. It was really neat!

After a week, we learned several important things:

A kidney transplant is looking possible so far
It will be extremely difficult
There are many more tests to be done
There are many more specialists to consult
Hilary still MIGHT be able to donate
Minnesotans LOVE their sandwiches
Hobby gaming is popular in this area
The doctors here really know their stuff
The doctors here appreciate an informed patient
Everybody talks funny
I have to come back in March for a scary test where they cut open the jugular vein in my neck, fill me full of dye and watch with an X-Ray machine all while I am WIDE AWAKE!!!

I'll blog about that later...

-Nat

MAYO part 1

2010-03-14T00:35:00.002-06:00

The kidney people in Wichita thought I was too difficult to do a transplant on, so they referred me to the Mayo clinic. The Mayo clinic is the world's best hospital. It's located in Rochester, Minnesota, a city of around 100,000 people. Basically, it's about 18,000 smaller than Topeka, KS.

The Mayo clinic specializes in difficult cases. They are always learning and creating new ways to do medical science. The Mayo clinic complex is made up of many tall skyscraper buildings all connected by skyways and a walking subway system. That's nice because it's not really good weather in Minnesota most of the year.

In February, I made my first visit to the Mayo clinic. I made a second trip to the Mayo clinic in early March. I'll blog later about both of those visits...

-Nat

Lemons

2009-11-24T12:53:00.003-06:00

Sometimes life hands you lemons.....
Sometimes life shoots lemons at the back of your head from a cannon at close range.

I've noticed over the past few months that Nathanial tends to blog about facts and I tend to blog about emotions. I am warning you now, this will be an emotion-filled blog.

I believe in my very first blog about this transplant, I talked about why it was so easy for me to give Nathanial a kidney. I compared it to walking past a drowning person and wanting to save their life. Its natural to want to jump in and save someone you love. Well, now I find myself feeling like I tried to save that drowning person. I ran down to the shore and I tried everything I could to keep him from rushing further down stream. I even got a few injuries myself. And now I find myself standing here empty handed and scared to death ........and he's been taken too far into the rushing water for me to save him. I'm sad and I'm devistated and I'm angry! I'm really angry! I don't even know who I'm angry at, but I'm angry!

I'll tell you about yesterday. Yesterday was our meeting with one of the surgeons and the coordinator in the transplant unit at St. Francis. At first, it was just going to be Nathanial and mom and dad. I wasn't going to be able to attend because I had to work and we found out about the meeting short notice. Then, I had a sick kid yesterday. Having a sick kid sucks. But this did present the opportunity for me to go to the meeting at 1:30. I figured Corynne was old enough to stay by herself for just a couple hours. Especially since this meeting was when they were going to discuss the options we had going forward with Nathanial. What we were told was going to be a meeting to discuss future options and discuss maybe another transplant date to shoot for, turned into, quite possibly, the most devistating doctors appointment I have ever attended.

While sitting in the waiting room, I had the most dreadful feeling come over me that somehow things weren't going to be alright. I know what you're thinking ,'there goes Hilary with her cup half empty logic again!' But that really wasn't the case. It was more of a psycic thing I get. Sometimes when my husband is on his way home, I will open the garage door just as he is rounding the corner, because I can sense that he is near. And even when we were dating I would pick up the phone before it would ring just seconds before he called me. The night of Nathanials huge ordeal a few years ago, (when he lost his kidney function) I did the same thing. I fell asleep knowing something would happen that night. I even called mom before bed and told her I was sleeping with my phone and to call if she needed to, no matter what time. I received a call around 3am that night, if I remember right. It was mom, and Nathanial was not alright. Sometimes I know things. Its probably just womens intuition, but whatever it is, its usually right.

The surgeon that showed up for the meeting wasn't Nathanial's surgeon...he was the one that was supposed to be doing my surgery (removing the kidney). And the coordinator that showed up was also my coordinator instead of Nathanials. Odd. Very odd. The whole family sat on one side of the table .....dad, then mom, then me, then Geoff, then Nathanial was kind of at the head of the table in his wheelchair. The surgeon came in and the coordinator. Sitting opposite us, they looked nervous. My coordinator wasn't making eye contact with me at all. I feel almost as if he were a friend more than the coordinator throughout this whole process and I could tell he was upset about something. The surgeon began by telling the family that the meeting would not be a comfortable one and that he is sorry he has to deliver the news to us. He turned to me and began telling me that in the transplant unit, their main objective is to assure the safety of the organ donor above all else. He said if any little thing indicates that it would be unsafe for me to donate, then they will cancel everything. I understand all of that....they've been telling me that now for weeks. He then proceeded to tell me that due to a blood result they got back from the Mayo clinic indicating that I, too, have Leidens Factor V, they will not allow me to donate my kidney. It would pose too great a risk to go through a surgery like that for something that is not 'fixing' me when I have the Leidens Factor V (that 'V' is a roman numeral for five--Leidens Factor Five). Of course the first thing in my head is that I have been through so many surgeries and I have never had one single complication. But he quickly said 'I know you have had plenty of prior operations and never experienced any complications, but that doesn't mean you won't have any next time. We have to balance the risks and at this time we're not willing to take the risk on you'.

Then without even a hesitation, he turned to Nathanial and began telling him about everything else they found. To fully understand the issue, you must know what Leiden Factor V is. Leiden's is a clotting disorder. It is a mutated gene that is hereditary and it causes abnormal blood clots. Everyone who knows Nathanial knows he has been plagued with blood clots since just after college. One time he had a clot that went all the way from his ankle to the middle of his abdomen. Prior to a sugery a few years ago, Nat had a surgeon that insisted he get a filter surgically installed in him to catch any blood clots from getting to his upper parts....his heart, his lung, his brain, etc. They describe the filter as an umbrella shaped thing that they inserted thru his neck down into a main vein in his chest. Once in place, they 'opened' the umbrella so that it was permanently lodged there in Nathanial's big vein preventing blood clots from getting to the important area's. However, years later, this becomes a problem. The surgeon told Nathanial that the filter is completely clotted and obviously has been for some time. They said that his body has grown new veins around the filter. Those new veins now make Nathanials middle section VERY hard to operate on. Number two issue: Nat's liver is enlarged. They believe the cause is, once again, clotting. Blood is going into the liver, but no blood is coming out...they think. I stress 'they think' because they have to do more tests to exactly determine if that is what is going on. The doctor really danced around that because he wasn't 100% sure that was why the liver was enlarged. Number three issue: Nathanial doesn't have room for a kidney even if they found a new donor now. Between the clot filter, and the large liver, and the old kidneys, and the new veins......Nathanial is just out of room. The surgeon told us that even if they had a good donor at this point, the transplant idea would still be out of question.

There was a lot more talking than just that. I remember bits and pieces of it, but it was really hard to focus at that point. Geoff looked like someone shot his dog. Mom was handing me kleenexes. Dad was wanting more answers. Nathanial was getting out his little notepad of questions he had written down. The doctor told Geoff and I that the kids could also have the Leiden's Factor V and to make sure they were tested before any surgery or if they have any kind of injury. The surgeon also mentioned that there might be a doctor somewhere in Pittsburg that would look at Nathanial more. The surgeon wanted a full run-down of Nathanials medical history and while the family was talking through that, I guess I must have dazed out. Because I don't remember a lot of what all was said. I remember going from angry to just weepy then angry then weepy. I remember looking at Nathanial sitting there asking questions and being so polite. I remember Geoff asking a couple questions about what if they hadn't tested for this. (sidenote: the only reason I was even tested is because Geoff brought it up. None of the doctors thought about testing me prior to ME telling them about Nathanial having it and wondering if I should also be tested).

I excused myself, telling everyone I really needed to be at work. Mark, my coordinator, came over and hugged me on my way out the door. There weren't really any words exchanged. I mean, what can you say? 'Nice try' ? 'Better luck next time' ? Nothing at all is appropriate in a moment like that. Mom and dad and Nathanial were a bit slower than Geoff and I in getting out of the transplant unit. They have Nat's wheelchair and all....and I just kind of bee-lined it for the elevators. Once at the elevators, I just hugged Geoff and cried and cried. I tried to wait until we got outside, but sometimes the tears just turn on and I can't find the off switch.

Nathanial is talking about cashing out his life insurance policy now. And he's making a list of all the things he wants to do before he dies. This has a crippling effect on my mind. I am SO angry that Nathanial has to keep on suffering. I am so spent of worrying about little things, like if he catches a cold or gets the flu. I am exhausted of asking God why Nathanial. Why him.....of all the people in the world. Why him?

I slept okay last night. Until my alarm went off and I sort of came to. I immediately realized everything that had taken place the day before and before I even got out of bed, I had teary, bloodshot eyes. I was hoping to wake up and find out the last two weeks were a bad nightmare. No such luck. I got showered and dressed and packed lunches and saw the kids off. I went to work, but being the cry baby I am, my boss sent me home. I needed to be home I guess. I need to just re-colaberate and pray and digest everything.

So with all that being said, this will be my final blog. There's really no more stories for me to tell. No more drama for me to bring to the table. All my struggles seem so insignificant now with the IV's and the lab. I'm very sorry this didn't end with the happy fairy-tale ending I had dreamed it would. The family will search for any answers we can get for Nathanial. Everyone in our family will be tested to see if they also carry the Leiden's Factor V mutant gene. And no matter what life throws at us next, we will still have our faith.

Love,
Hilary

Not Good News

2009-11-23T18:47:00.002-06:00

We talked to the doctors today. One poor fellow had drawn the short stick and had to give us ALL the bad news.

Hilary has Leiden Factor 5, just like me. This means she'll build blood clots easily. This means she cannot donate a kidney to me. It's not all that bad for her. 5% of all caucasions in North America have Leiden Factor 5. Most people never have a problem with it. For Hilary, it means she'll have to be aware and let her doctors know if she has any major surgeries. It also means she'll have to be a little careful that she doesn't lay around too much, keep her legs moving and drink a glass of wine every night(it's a blood thinner). I think she's OK with that.

As for me, I have an enlarged liver. After Thanksgiving, we'll do more tests and see if it's Budd-Chiari Syndrom. If it is, I have to have that taken care of before the kidney. I cannot have a kidney transplant while I have that.

Well, that's about it. Good news is all my bone marrow work came in positive. Later.

Grace and Peace,
-Nat

Gross Long Day

2009-11-21T16:10:00.003-06:00

On Friday, I went to dialysis. I always go to dialysis on Fridays, but this day was different. I made a mistake. Normally, before I leave the house for anywhere (which lately means dialysis) I clear out. I go to the bathroom, and I pick my nose clean of all boogers. Yes, yes, I know that's gross. I have a big hole for a nose. I'm self concious about people seeing my nose boogers, especially at dialysis where the nurses get really close and I'm leaning back in a recliner. In fact, I carry a small pocket mirror with me, so I can check out my nose and make sure it's clear.

Anyway, I start dialysis around 6:00, by 8:30, I REALLY had to go to the bathroom. I had the nurses unhook me and I waddled as fast as I could to the bathroom. After a long trip to the bathroom, I went back and got plugged into the dialysis machine again. Not long later, I REALLY had to go again. I had only 15 minutes left, so I just quit early.

I had been feeling pretty bad for awhile. It wasn't just frequent trips to the bathroom with massive diarrea, I also had the chills. Normally, if I get the chills, I've got a temperature. Not so this time. So now I've got the chills, diarrea, stomach cramps and I feel like puking. I hadn't eaten anything all day. Every time I took a drink, I had to run to the bathroom. I was sitting at home in the recliner, rocking back and forth, pretty much just being miserable. Any plans I had for the day were shot!

Now, my dad was home, watching me like a hawk. He gets real worried when I start rocking back and forth. After an hour and no progress, he decides it's time to go to the hospital.

My mom has to leave work early, we need her van to drive to the hospital. She has missed SO much work to drive me to doctors and hospitals. Anyway, by now I'm dehydrated. The constant diarrea, along with dialysis has literally drained me. This tends to make my legs cramp. I've got an hour drive to the hospital in Topeka, with diarrea, and leg cramps.

I end up taking an oxycodone for the cramping pain as well as anti diarrea medicine. Things start going a little better. Unfortunately, (fortunately?) by the time we arrive at the hospital, I feel fine. I had been suffering for hours and when we finally arrive where I can get some help...I don't need help any more. This is annoying. Regardless of how I feel, we go inside. They do some lab work and do something I most needed...SALINE!!! I know that requires an IV, but my oxycodone was still working. I got the IV put in and that precious water began flowing through my veins. I felt MUCH better, very quickly.

I guess our bodies are made up of quite a bit of water. Being dehydrated stinks! It feels so bad not to have enough liquid in you, even though you probably don't know why you feel so bad. Anywho, a couple hours later, they let me go home. I feel fine now that the diarrea has stopped and I'm rehydrated.

Despite the long day, it ends up quite a pleasant evening. I even got some sleep that night. :)

Stand Still

2009-11-19T07:24:00.003-06:00

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

2009-11-15T11:44:00.008-06:00

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

Delays

2009-11-14T07:34:00.002-06:00

Yet more delays. Some of my blood work came back bad, so now I have to run LOTS of tests and meet with specialists on Monday. Until then, the transplant has been delayed.

Oddly enough, one of their suggestions is stopping some medicine I have been taking. There is a possibility that it is causing the blood problems. Stupid medicine. It helps one part of me, but hurts another part of me. :(

Oh well. At least we're still in the end phase of this big project. I'm glad they caught this before the surgery. :)

Being Admitted - by Hilary

2009-11-12T20:16:00.003-06:00

Its official. Nathanial and I are admitted to Via Christi St Francis for the transplant. They make this whole process so convienant--they let us use yesterday (Thursday the 12th) to get all our admission paperwork and lab done so that on Tuesday (THE day) we just walk right in and go to it. I have to say, I was starting to get really nervous about this transplant....until yesterday. Yesterday brought such a peace and calmness to me. I don't know why and I don't know how, it just did.

Yesterday I was to be at the imaging center at 6:45 in the morning. It was time for my MRA, magnetic resistance anatomy imaging. I knew this required an IV so I had been literally making myself sick about this day for two weeks. They were going to start and IV drip of some kind of radio-active material and then stick me in the machine so they could see all my insides and map out just exactly how the surgery would take place.

When Geoff and I arrived we had to circle the hospital a few times first to find the imaging center. It was hidden! It was all tucked inside a little C-shaped part of the hospital, but it was a seperate building. I get stressed out when I'm running late, and although this didn't necessarily make me late...it did make me feel like I was late so I got flustered. Upon entering, the desk clerk had me fill out forms releasing my information and consenting to treatment....all that rigamaroo that goes along with doctor visits. Then they asked Geoff if he was going to be in the room with me. What? He has the option!? Last time there was radio-active material in me they wouldn't allow him in the same hall!! So needless to say we were pleasantly surprised he was allowed to go with me!

They guided us to the dressing room and told us that we needed to leave all our things in there. They even made Geoff empty his pockets of his wallet because the room would suck the magnetic stripes right off of his credit cards. ...uh... seriously? We obliged and then I got to put on my little hospital gown. While the gown isn't dripping with sexiness, it sure is comfortable! The nurses guided us to the actual MRA room. It had this giant machine with a tube in the middle and a bed that slid in and out......and then over in the corner was a recliner and some magazines and a little plant. It was actually pretty funny looking because the room itself was so 'medical' and then over in the corner was a little piece of hominess. I immediately began asking which nurse was going to do my IV and with hardly any more questions, they assured me they would just request someone from the IV team to come over from the hospital :) I have determined I must get a look about me once IV's start getting talked about. Maybe its when I go white or when I start shaking uncontrollably, but something sends them the signal that they're going to need help! The nurses said we could do half of the testing before the IV team showed up and then we would stop halfway through for the insertion (gag) of the IV and we would finish up the tests after that.

I layed on the bed....well, I wouldn't exactly call it a bed.....it was a board with a little bit of cushioning on it. And they strapped me down. The nurses had straps around my hips and my belly and my under-boob-area. My shoulders had to line up just right and then I had to raise my arms above my head. Next they proceeded to explain how I must hold completely still for this test. Even when they pulled me out of the tube for the IV, I must NOT move my torso at all. Great. I don't usually hold still for very long. Geoff and I were then given ear plugs. Apparently the machine is so loud that even Geoff had to wear ear plugs....and he wasn't inside the contraption! They layed a nice warm blanket over my body and then they put warm pillow cases on each of my arms. I was told my arms would be the coldest during the test because they were above my head and they kind of stuck out of the tube. I was strapped (literally) and ready to go!

The giant machine lifted my bed and sucked me into the tube. I'm not clausterphobic in the least bit so this test didn't worry me a bit. I have heard stories of people being scared to death about being put into this tube. Not me, the IV was still the only thing on my mind. Or it was the only thing on my mind.....until the machine turned on. HOLY COW!!!!! The imaging machine was so loud that it sounded like someone was jack-hammering right there in the room!!! No wonder we were given complimentary ear plugs!! I was given a series of breathing commands...'Hilary, take a deep breath and hold it'......okay you can breathe now......'okay, now take a deep breath and hold it again'......etc.

Right about the time I was sort of drifting off into dreamland and really getting relaxed the IV team showed up. They pulled my little bed into the hall and reminded me not to move my torso while they administered the IV. Oh crap.....usually I flop around out of control while getting an IV. If I move my legs around wiggle, it seems to take my mind off the attack of my viens. This was going to be tough. The nurse started doing that slap thing where they slap the back of your hand to 'find a good vein'. THIS IS PURE TORTURE!!! I yanked my hand out of hers and the poor little asian nurse kept saying (in her broken english) 'wat wong wit you?' 'why you don't like?'. Then she would look at Geoff and say "wat wong wit her?" " I didn't do noting yet". I always feel bad afterwards for whatever nurse got chosen to give me my IV. But I went easy on this one.....I had to....because I was tied down and couldn't move my torso. The nurses got me cold rags for my head and they rubbed my feet and I prayed while they did their thing.....and amazingly, the IV went in fairly quickly and painlessly.

Crap! I will have to finish this blog later I guess. Its almost time for me to get to work!

~Hilary

Kidney Song

2009-11-11T06:31:00.000-06:00

Dialysis

2009-11-10T14:21:00.003-06:00

I've only got three more visits to the Dialysis clinic. I'm going to miss all my friends there. Granted, I won't miss actually being dialyzed. When I first started on Dialysis three years ago, I HATED it! Mom and Dad would go with me, sit next to me and rub my head. I would cry the whole time and shake uncontrollably.

Things are quite a bit different nowadays. I go by myself. I watch TV and talk to people. Shoot, most days I fall asleep while I'm there. I even recently asked to be on dialysis for a longer time. I'm back up to four hours a day, three days a week. I guess you can get used to almost anything. I never would have thought that three years ago.

The human body is an amazing design. It can handle almost anything. The human brain is amazing too. I mean, who was it that first figured out how kidneys worked and what they did for the body? And then, who was the genius that figured out a way to use machines to do the kidneys' job when they shut down? It's crazy!

It's only a week until the transplant. Life is about to change drastically for me. Granted, I think it will be for the better this time. :) This Thursday, Hilary and I go in for the final tests and stuff. Next Tuesday is the surgery.

Only three dialysis left. I'm pumped!

-Nat

My Hero

2009-11-09T20:32:00.003-06:00

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.

Why We Need Our Kidneys- Or At Least One Anyway

2009-11-07T07:18:00.003-06:00

Most people know that a major function of the kidneys is to remove waste products and extra fluid from the body. The waste and extra junk are removed through urine. The production of urine involves highly complex steps of excretion and reabsorption. This process is necessary to maintain a stable balance of body chemicals. <---- (Can anyone tell I didn't write that? Its copy and pasted from the Nat'l Kidney Foundations website. SSssshhhh. )

The critical regulation of the body's salt, potassium and acid content is performed by the kidneys. The kidneys also produce hormones that affect the function of other organs. For example, a hormone produced by the kidneys stimulates red blood cell production. Other hormones produced by the kidneys help regulate blood pressure and control calcium metabolism.

The kidneys are powerful chemical factories that perform the following functions:
*remove waste products from the body
*remove drugs form the body
*balance the body's fluids
*release hormones that regulate blood pressure
*produce an active form of vitamin D that promotes strong, healthy bones
*control the production of red blood cells

There are two kidneys, each about the size of a fist, located on either side of the spine at the lowest level of the rib cage. Each kidney contains up to a million functioning units called nephrons. A nephron consists of a filtering unit of tiny blood vessels called a glomerulus attached to a tubule. When blood enters the glomerulus, it is filtered and the remaining fluid then passes along the tubule. In the tubule, chemicals and water are either added to or removed from this filtered fluid according to the body's needs, the final product being the urine we excrete.

The kidneys perform their life-sustaining job of filtering and returning to the bloodstream about 200 quarts of fluid every 24 hours (un-be-frickin-believ-able!). About two quarts are removed from the body in the form of urine, and about 198 quarts are recovered. The urine we excrete has been stored in the bladder for anywhere from 1 to 8 hours.

Okay, class, that concludes todays session of Kidney Function 101. Hope you all learned something valuable!

A Million Things

2009-11-05T08:16:00.003-06:00

Now that we have a date, I have a million things to do. I would like to tan (yes, I know that is shallow. But I would really like to not be a pasty white after the surgery. I feel better when I'm tan. So sue me) My granny is coming to stay at my house to look after the kids for a few days post-surgery, so I need to make a spreadsheet for her: how to get to the hospital from the house, what time the buses pick the kids up for school in the morning, how to get to Target and WalMart from my house, what time the kids get out of school......all those little things. The guest room needs cleaned out -my husband actually took care of that one last night for me :) I have a bunch of paperwork to fill out for my leave of absense from the bank. We have to find someone to take care of mom and Nathanial's dogs while they are in Wichita that week at the hospital. ..................the list seems to never end.

So, its my go-to-work-late-day and what do I do? I shop. I bought the t-shirts I've been eyeballing since the day I started testing to be a donor.

http://www.cafepress.com/+kidney+bumper-stickers

Not only did purchase Nat and I the "I'm the Donor" and the "I'm the Recipient" t-shirts, but I got just a little carried away and bought some buttons for everyone's shirts too. I couldn't control myself! There are so many fun sayings on these things!! You should check out their website. They have a tshirt or a bumpersticker for just about everything in the world. But now, I realize how much time I have wasted online and I am going to shut this dang laptop and go do something really productive! PROMISE!!

~Hilary

Dear Kidney,

2009-11-02T19:24:00.003-06:00

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

2009-10-31T07:31:00.004-05:00

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

2009-10-24T22:47:00.004-05:00

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

2009-10-22T22:27:00.003-05:00

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)

2009-10-22T20:41:00.004-05:00

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 ---->

2009-10-22T17:41:00.004-05:00

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

2009-10-20T06:40:00.004-05:00

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...

2009-10-17T17:37:00.003-05:00

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

2009-10-17T07:36:00.004-05:00

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

2009-10-15T07:35:00.005-05:00

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

2009-10-14T07:49:00.001-05:00

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.....

2009-10-13T08:23:00.003-05:00

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

2009-10-12T19:08:00.005-05:00

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

2009-10-12T11:46:00.006-05:00

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....

2009-10-11T07:26:00.000-05:00

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

2009-10-10T10:58:00.000-05:00

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

2009-10-10T07:04:00.000-05:00

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

2009-10-08T15:03:00.000-05:00

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

2009-10-08T07:09:00.000-05:00

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

2009-10-07T21:22:00.000-05:00

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!!

2009-10-06T20:50:00.000-05:00

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

2009-10-05T22:03:00.000-05:00

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

2009-10-05T20:13:00.000-05:00

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

2009-10-04T20:41:00.000-05:00

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.