14 more days

I'm actually getting a little excited now. I had time last evening because I couldn't go out to church (we're having revival meetings, don't know if I mentioned that before, but I can't go to any more meetings now) so I was able to have some time to myself and think about this transplant, cry about it, plan a little bit, figure out what I'm going to pack, and stuff like that. This morning as I woke up and started dialysis, realizing that even though I woke up earlier, I'm still going to have to do an exchange every two hours 7 times every day for two weeks... I got excited. Because in 14 days I'm gonna be off dialysis.

I'll be able to get this tube out of my stomach. I'll be able to swim again. I can go back to school. I can get a job and work. I won't be confined to my bed for the better part of the day. I'll feel well enough to call m friends and talk for hours. I'll feel well enough to even go and visit my friends like I used to. I'll be able to go places and do things again. I'll be able to just live again.

That's exciting.

Ugh, rough day

So, in my last post I mentioned that I only had three weeks before the transplant... well, it's actually two weeks exactly, starting tomorrow. Which means, if I count today, I have 15 days before I get a new kidney.

I don't know if I've ever been more stressed in my life than I am right now. I remember when I was 13 and I was about to have my first kidney biopsy and how stressed I was about that... I guess the older I get, the things I have to go through get harder and harder and I get more and more stressed. It's a wonder I have any hair on my head at all...

I got the results from my P.E.T. test today and it showed that I am not getting enough dialysis which explains why I'm not feeling better. My nurse told me I would have been a perfect  candidate for the cycler machine and I wish so badly that I would have been able to switch to that way before now. I was supposed to start today and I regret that I agreed with the nurse and decided against the training today because she already cancelled my order and now I would have to wait a whole week before I would be able to start and since I've only got two weeks left, there's no point.

So, because I'm not on the cycler... I have to do more exchanges, every two hours, every single day... for the next two weeks. Good thing I can't leave the house because if I'm supposed to get seven exchanges in every day, there's no way I'd be able to get out anywhere and still keep  up with that. Which really stinks because my church is having revival meetings with an evangelistic team and I'm not going to be able to go to any more meetings this week, or the Irish concert that they're having on Friday.

I also have to put more fluid in my stomach now and the more fluid, the more stretched out my stomach gets and the more uncomfortable I get. These next two weeks are NOT going to be fun...

In other news, I had almost twenty tubes of blood drawn today for some Thrombosis (I think) panel... I don't really know what it's for but I was poked four times and I'm still bruised and sore from the last time I had blood drawn (that was six pokes, that time) and so now, I'm really sore and I'm completely exhausted because it  was a lot of blood. I would totally go to sleep if I could but I can't because I have to do another dialysis exchange so that's why I'm blogging because I'm trying to keep myself awake which means I need to keep myself out of bed.

I'm not meaning to complain, but it was an incredibly rough day and the next 14 days are only going to get rougher and I just felt like writing about it so I did.

On a really sad note, I lost my iPod touch... I'm so sad, it was expensive, had some stuff that was important to me, and was going to be the way I kept in touch on Facebook and my blog while I was in the hospital because it had internet connection and it's way better than setting my laptop on me. Just so you all know.

It's a date

November 4th

That is my tentative scheduled transplant date.

Yesterday my dad got a call to say that his last test that he redid came back completely normal and the doctor said he would talk with the transplant doctor one more time and then the case would be sent to the committee for review.

Today during my dialysis appointment, I got a call to say that the doctors had talked, my dad cleared all the donor testing, my case had gone before the committee, and the scheduled date for surgery was November 4th.

The timing for the news really wasn't the best, I would have liked to have been home so I could lock myself up alone in my room and taken the time to process everything but, as it was, my nurses and doctor got to hear the news the same time I did (my mom took the call and told me) and, of course, they were all thrilled while I sort of just sat there in shock trying to comprehend what I had just heard. Then I felt like I had to act all excited and try to smile because I kept getting asked "Are you excited?! Isn't that great news!? Are you excited!?"

Truth is, no, I'm not excited. Not yet. I will be, I'm sure, later. But now, I'm just trying to take in the fact that this is finally happening. I was just resigning myself to the fact that this was probably not going to happen and I really didn't think my dad was going to clear and if he didn't, then I wasn't going to let anyone else get tested because I didn't feel I had the emotional energy to handle the stress of another living donor process. I was about to switch to a different type of dialysis which would have been easier on me tomorrow but now there's no point to try and change my routine when I've only got  about three weeks to get used to it before I stop dialysis altogether.

A huge part of me is in disbelief. I have an attitude of "I'll believe it when it happens." I don't let my hopes get up very much anymore because the lower my hopes are to begin with, the less they fall and crash when things don't work out the way I hoped for, if that makes any sense at all. I've dealt with a lot of disappointment in my life and I'm not a very optimistic person. I can fool people into thinking I am, but in all actuality, I have a very bleak outlook on life most of the time and I can be very cynical and suspicious... especially with things like this. If I'm not excited, it's for that reason.

I'm also not excited because I'm scared about the surgery... not for me. I can handle surgery, I actually like anesthesia (probably a lot more than I should) and pain pills are very effective. I'm worried about my dad. This isn't just me, anymore. Another person is involved. A person I care about and love very much. And if something were to happen to him because of this surgery... words can't even describe how upset I would be.

I'm sure I'll be excited about this later. I'll definitely be excited about it when it happens and I feel better. But right now... the word that comes to mind is shock. I'm pretty shocked about the whole thing. And I'm stressed about it. I've been stressing about it since I went into failure in April and I'll probably be stressing about right up until they knock me out with anesthesia. You can quote verses to me about trusting in God and not being anxious about anything but I already know them all. I do trust God, even with my pessimistic, cynical attitude about life, I just don't necessarily agree with Him and that's what stresses me. We aren't exactly on the same page about how my life should turn out and, I realize, I'm not God and I don't get to choose that. But that doesn't help my emotions any and my emotions have been going haywire since April and they aren't showing any signs of changing.

However, I'm not letting myself get sidetracked in the battle against my emotions. They'll change when they "feel" like changing and I'm not going to try and force them to change. It's a losing battle anyway. What I do have control over is my behavior, my response, to these circumstances. If you see a smile on my face, it's because I'm really good at smiling and being polite when I'd rather scream or yell if I hear the word "kidney" one more time.

So, obvious prayer requests would be that the date will stand (or get moved up sooner) and me and my dad will both be physically prepared for the surgery. Some of my levels were off today so I need to be more careful what I eat (and I need to eat more, I'm not doing so well at that lately) and I need to keep myself free from infection of any kind. I think I'm coming down with a cold so please pray that it would not develop into anything more and just go away whatever it is that's making my nose stuffy and my throat scratchy.

November 4th... at least I have something to look forward to.

Long time, no blog

No worries, I didn't fall off a cliff or (more worse) land myself in the hospital again, either. I just wasn't in the mood for blogging. I actually wasn't in the mood for much of anything. Yes, it was one of those moods again where I hate everything and everybody but it's passed (again) and high time I let you all know what's been going on with me.

Last Tuesday my dad went up to OU to meet with the kidney doctor again and look over the results from the test that he had to redo. Apparently, there was a miscommunication between the hospitals here and there and the results had not yet been faxed so there were no results to look over when my dad went up there. Instead, he had a talk with the kidney doctor and he promised to call whenever he actually got the results himself.

I can't remember if I wrote about why my dad had to redo the test or not and I don't want to stop and go look it up right now so here's why again if I already wrote it before. This might be a little too much information for y'all but it's how things are done so you'll just have to bear with me.

The kidneys filter wastes out from your blood and remove them in your urine. Things like protein and such are supposed to be kept in your body but when the kidneys aren't working (like mine) the protein comes out in the urine while the toxins build up in your blood. The kidneys do a lot of other things too but for now we're just focusing on this aspect.

The best way to check the kidney's function and to tell how well it's working (or how it's NOT working) is to do a 24-hour urine collection and and a blood draw and compare the results. I've done several of these throughout my lifetime and I can tell you all about it but I won't because I don't feel the need to gross y'all out and scare you away from ever reading my blog again. 

As part of the donor testing, my dad had to do two of these tests at different times to make sure his kidneys were working fine. The first one was fine but the second one showed protein in it. So they had him redo it, and we don't know what the results are yet from this.

Protein can spill into the urine because of extra physical activity, and my dad is a very hard worker and does a lot of physical activity, so it's highly possible that the protein in his urine was a result of that. And that's what I'm hoping it is. However, this could be a sign that my dad has something wrong with his kindeys too and we're just now catching it. Obviously, that would disqualify him as a donor and it could possibly mean kidney failure later on for him too.

As if that wasn't enough, one of my younger brothers is also spilling protein in his urine, and he is NOT very physically active at all. If he ends up diagnosed with a kidney disease, it's highly possible that all of my immediate family members (and extended too, for that matter) could be disqualified from being able to donate to me, or have to undergo even more extensive testing than usual to make sure their kidneys work fine.

Frankly, I could not be more frustrated about this. I've spent a lot of emotional energy on my dad's testing and I feel like I've got nothing to show for it. I still don't know whether or not he is the donor and I definitely do not have a transplant date to look forward too. If my dad doesn't qualify, I'm not sure I'm gonna be up for someone else to undergo the testing for a while, if it's taking this long then I might as well wait till my name gets to the top of the transplant list and get a cadaver (from someone recently deceased) kidney.

Yesterday, I had an extremely long day at the dialysis center having a P.E.T. (Peritoneal Equilibriem Test) to determine whether or not I'm getting enough dialysis and to start things moving on my cycler training. We almost had to abandon the whole test halfway through it because the nurse couldn't get my blood drawn and this test is extremely time sensitive. I had three nurses in there at one point, all taking their turns poking me, until they finally got it and was able to get some blood, but it may not be enough and if it isn't, then I'll have to do the test all over again. 

My nurse says that my cycler training should still happen no matter what the test results are and I really can't wait for that because then I'll be able to do dialysis at night instead of all day long. 

Also, on a much happier note, I finally got some good quality rest last night thanks to my new friend, Ambien. I have not been sleeping well at all and I think that is what has been putting me in my "moods" lately so I decided to try some sleeping medications. I was prescribed Restoril first and I still have an almost completely full bottle of that because I only had one and I won't take it ever again. It didn't even work, I slept just as terrible that night, and I felt like a zombie the entire next day because it takes about 10 hours to wear off. Ambien worked great last night, I slept deeply and soundly, and woke up perky. It was great. My only thing is that it bugs me to have to need sleeping pills and I don't want to get addicted, so I'm hoping that this will just help me to get into a schedule and then I won't need them. 

Well, that's all I can think to write about. I'll continue to update you when I have anything. :-)

Small update on things

Today I had my blood drawn and my vein mapping scheduled. It was easy and uneventful really. The blood was drawn quickly and relatively painlessly, one stick and one tube... piece of cake. The vein mapping was a little more interesting but completely painless and easy. They did an ultra-sound on my arms to look at the veins and the arteries and will use that to determine whether or not I can have a fistula put in so I have another means of dialysis. Aside from having a blue rubber band tied *tightly* around each of my arms for five minutes (ouch) and having lots of goopy, slimy gel stuff poured over my arms from my wrist to my shoulder... it couldn't have gone smoother and the whole procedure lasted about 15 minutes. I waited in the lobby longer than the actual procedure took and the nurse made a joke about the paperwork taking longer.

The blood that was drawn will tell my complete blood cell count (CBC) to make sure I'm not anemic or anything like that and also it's just routine to make sure my dialysis doesn't need to be adjusted. The vein mapping will tell the doctors what I have to work with as far as what my other dialysis access options are. Currently, I only have one access which means only one way of dialysis so in the case of an emergency or for any other reason that would cause me to have to stop PD, there needs to be another access so I can still receive dialysis. I really don't want to get a fistula if I can help it... those things are ugly and for some people, it's already awkward enough so I don't think I really want to get an ugly, pulsating, lumpy mass that people will ask about, want to touch and/or just stare at it and make everything even more awkward for me than it already is. On the other hand, I could make up some really cool stories about it...


And as for the transplant update... my dad is redoing one of the tests and he has an appointment with the nephrologist (kidney doctor) next week I think to go over the results again before he meets with the head transplant doctor (again) and THEN, if everything is good, my case will be presented to the committee and, after that clears, I'll finally have a date for the transplant and something solid to finally look forward too.


So please pray, if you would, that everything with my dad's tests would come back fine and that they would move this process along as fast as they can. Thanks! :-)


Also, a little bragging moment before I go, I was able to catch the last ten minutes of my siblings' volleyball practice and I was soooo proud of them. My sister was the cutest girl there and my brothers made some excellent serves, they practice hard and they play well with their team and I made sure to cheer real loud for them when I was there. I think I'm going to try to go to more of their practices... I can't do a whole lot but I can still cheer good and loud. All that to say... my siblings are the best and I love them tons and yes, I am biased, be jealous because you don't have amazing siblings like mine! :-)

Trying to sprint in a marathon

I'm in one of my "moods" again... What "mood" you may ask? The one where I hate every thing and everybody, noisy little brothers seem even louder and more obnoxious than ever, I'm either too hot or too cold, my hair looks ugly, I'm angry for no reason in particular, I feel like crying, screaming, sleeping and punching the wall all at the same time, I'm bored out of my skull, my toe-nail polish is chipped and the world is falling apart. Yes... that mood.

And because I've been in "that mood" for the last few days, I haven't posted anything because I simply didn't want to and also because I didn't have anything really relevant to this blog to post about. No updates, no news, no nothing... And because my mom decided to read Hind's Feet on High Places too, I haven't been reading it as much as I normally would have (that, and the fact that it's actually a REAL book and not the text on my iPod that's easier to read from when I'm laying in bed versus trying to hold a real book sideways...)

So... all that to say, since I'm not in "that mood" right now, and I don't hate everybody and everything, and I've got the house to myself which means the house is quiet for once, and I was able to read some of Hind's Feet I've decided that now is a perfect time to post on my blog because I don't know when I'm going to be in "that mood" again.

And just in case you're wondering... no, I am not using "that mood" as an excuse to be mean or cranky, and no, I don't intentionally decide to be in "that mood" it just sort of happens and I've long since decided that I'm not going to get distracted from the real fight by trying to battle my emotions that change in the blink of an eye from one to the other when I can just let the emotions happen and choose instead to control my behaviors and attitudes in spite of what the emotions are at the time.

Also, as I side note, if I ever do happen to post on here when I'm in on my "moods" don't be alarmed by what I say and don't take it literally. At the time, I may think that the world is falling apart, and I'll never get better and life couldn't be worse.... but it passes and I'll get over it, eventually. This mood, like all my moods, eventually changes to something else but for some reason I just don't ever seem to remember that fact when I'm despairing of something.

And now... to my thoughts on Hind's Feet...

I started with the Preface and was struck with this paragraph (actually, I was struck by the entire preface but particularly this paragraph.)


"But the High Places of victory and union with Christ cannot be reached by any mental reckoning of self to be dead to sin, or by seeking to devise some way or discipline by which the will can be crucified. The only way is by learning to accept, day by day, the actual conditions and tests permitted by God, by a continually repeated laying down of our own will and acceptance of his as it is presented to us in the form of the people with whom we have to live and work, and in the things which happen to us Every acceptance of his will becomes an altar or sacrifice, and every such surrender and abandonment of ourselves to his will is a means of furthering us on the way to the High Places to which he desired to bring every child of his while they are still living on earth."
-  Hind's Feet on High Places, Hannah Hurnard, pg ix

It's the marathon versus the sprint. I am a sprinter. Not literally, but figuratively, in the way that I live. I like to go to conferences or schools or camps and give it everything I've got. Run full speed and hit it hard and fast. When the week is over that's when I go home to crash and recover. I like to play hard and win. I like to live hard... and win. But that doesn't work when you have a chronic illness.


When you have a chronic illness, every little thing in your day requires energy and is exhausting. Some of you probably don't even think twice about taking a shower because it's easy for you to just hop in, get clean, jump back out and go about your day. Not so for me, or anyone else with limited energy.

That's where the marathon comes in... For the rest of my life, my kidney disease is going to dictate certain choices and decisions I make. I have to pace myself, hold back, refrain from playing another round of ultimate frisbee or volleyball, and make sure to take my medicine every day. I keep holding out for that day when I'll feel better but I don't know when that's going to be and if/when it happens, how long it's going to last before I'll be running another marathon.

I started out this trial like a sprinter, like I do most everything, not realizing that it was meant to be a marathon. Lately, I've been burning out. I get thrown into one of my "moods" want to quit and give up and I hate everything until my attitude changes and then I get up and start sprinting again, only to burn out again. I want to get to the end as soon as I can, I want to rush through the laying down and surrendering rights and the sacrifices at the altar and just get to the end and enjoy the rewards. I want to skip the pain, skip the journey, skip the lessons and just be done with it. Basically, I'm trying to sprint in a marathon...

"But the High Places... cannot be reached by any mental reckoning of self to be dead to sin, or by seeking to devise some way by which the will can be crucified" and there is no short-cut to lesson the journey and by-pass the valleys altogether, either. "The only way is by learning to accept, day by day, the actual conditions and tests permitted by God, by a continually repeated laying down of our own will" and accepting His. "Every acceptance of His will becomes an altar of sacrifice."

It's a marathon, not a sprint... and I need to run like it's a marathon.


 "Wherefore seeing we also are compassed about with so great a cloud of witnesses, let us lay aside every weight, and the sin which doth so easiliy beset us, and let us run with patience the race that is set before us,"
Hebrews 12:1

Not much to say...

I'm writing today to say.... that I have nothing to say. Well, nothing to say about what I normally write about, anyway because nothing new has happened. Today was a plain, old boring day but don't get me wrong, I'm not complaining. I'd rather have a plain, old, boring day than a day full of hospital visits, blood draws, waiting in the E.R. or sitting in a dialysis center. According to my siblings, however, I can talk the ear off of anybody so don't worry, I haven't run out of things to say.

I have decided to (finally!) post a picture here. I love blogs with pictures, and eventually I hope to add lots and lots of pictures here but it does take a bit of work and I just haven't wanted to mess with the tediously long download/upload process to put them up just yet. This one, I took with my computer's web-cam, right after I did dialysis and it was quick and easy... so I might take a few more with the web-cam and put up a couple more pictures like this. 

I pulled out one of my syringes just to be dramatic. And yes, the cap is still on, I didn't get THAT dramatic because I didn't want to risk dropping it and/or stabbing myself unnecessarily. :-P I look like I'm a nurse trying to be upbeat and positive while giving some poor patient their shot... "Hi! How are you? I'm going to stick this very long needle into your stomach but don't worry, this won't hurt a bit!" I always want to say to them "Oh really, why don't you stick it into your stomach first and let me see how you react and then maybe I'll let you stick me" Actually, I'm always told that it's going to feel like a little pinch, or an ant bite and I think to myself, "That's a pretty hard pinch or a really big ant that we're talking about here, cause this HURTS!" Ok, enough about shots now...

Except for sometimes getting a little hot and making my face feel stuffy, I usually forget that I'm even wearing a face-mask. I think I'm going to make it a new fashion statement and design them with cool, awesome patterns with diamonds and bright crazy colors that will revolutionize the face-mask and make me rich and famous. When I get my transplant, I'm going to have to wear one of these whenever I go out anywhere since I will have basically no immune system (I've never had a really good one anyway but whatever I have left is probably going to be completely wiped out with the medications I'll have after the transplant...) and I'll have to keep myself protected against the germs and stuff flying around.

Hehe, I'm going to have a lot of fun walking around Wal-mart with my face mask and making everyone think that I've got some terrible contagious disease and they're all going to probably avoid me as if I've got a plague or something and then I won't have anybody in my way when I'm trying to look through the sales racks... Maybe I should keep one with me in my purse from now on so whenever I need people to get out of my way, I'll put it on and start coughing and breathing like Darth Vader and then laugh as everyone backs off. Haha, that would be funny!

On a more serious note, my mom decided to buy a brand new copy of Hind's Feet on High Places and the sequel to that called Mountains of Spices. I'm going to be reading those very in depth and posting my thoughts about it here on days like this when I don't have anything else to write about. I highly, highly, highly, HIGHLY recommend this book to everyone, but especially to those who, like myself, are in a difficult season in life. I've read this book 3 - 4 times now and I never get tired of it, it's one of those that you need to re-read on occasion.