Tuesday, August 24, 2010

Update... somewhat

Well... if I wasn't feeling so well I could be tempted to get discouraged. But, I'm not, well, maybe a little but mostly I'm not because I am feeling better and I'm able to do some things again. I not only went to church Sunday morning but I also made it a baby shower that afternoon and was able to hang out with friends. I walked across the yard to my grandma's house and was able to visit with her a little and I got my crochet box out of storage and started crocheting again.

In light of all the things that I'm able to do now and that I'm feeling physically better, I was not too disappointed to learn today that my Doctor does not want me to start PD (home) dialysis yet because my protein levels still aren't quite high enough. Apparently PD takes protein away once I start so if I'm too low than it could cause more problems so in another two weeks, I will have more blood drawn and those labs will determine whether or not I can start the PD training. Sigh.... I never wanted to have to be on hemo-dialysis and if I could go back, I would have had the PD port put in way sooner so I would have been ready when I needed to start. Hindsight vision is 20/20 sometimes but you almost never see things clearly ahead in this crazy journey called life.

My dad made it home today from the transplant testing and he's got another appointment scheduled in September when the doctor will look over all the results of his tests and decide if he can donate or not. Unfortunately, that was the soonest they could schedule him in and then anytime after that, assuming he is the donor, we can schedule the surgery. I am feeling a lot better now and I am sure I'm gonna feel even better with the PD as soon as I can start that but nothing is going to compare to after the transplant and being able to get off of dialysis completely. There's still a few months left before the new year and I'm hoping that we will be able to push things fast enough so I can get this transplant as soon as possible.

So.... now it's back to waiting because that's basically the story of my life. If patience is a virtue than I am going to be the most virtuous woman in the whole world with how much I've had to wait in my life. Actually, not really, but I really have had to wait a lot during the past couple of years with this kidney disease in my life. And trust me when I tell you that a hospital's motto is "hurry up and wait." Unless you're bleeding to death or having a heart attack.... you're probably gonna wait a good couple of hours.

To end on a more humorous note, since I didn't really have all that good news to share, my mother is at it again with her schemes to try and kill me. Since shoving a straw down my throat while I was dozing off didn't work, Sunday morning she wacked me in the head with a blow dryer while she was styling my hair. You know how when you wave the blow dryer back and forth so the hot air doesn't burn you, well she waved it too close to my head and thunked me with it. And she didn't even notice! She only noticed when I said "Ow!" and then she stopped and asked "Did I just hit you?" and I said "Yes." and then my mom did what she always does... she laughed. My hair looked amazing that whole day, though, and I told my mom that she might have missed her true calling as a hair stylist because she's always been really good at doing my hair for me. Next time, though... I'm gonna tell her not to get so close with the hair dryer. :-)

Monday, August 23, 2010

Phase two in progress

My dad left yesterday afternoon to go up to OKC and get tested today and tomorrow. It's the phase two of the donor testing, if you will, and it will determine whether or not my dad will be able to donate his kidney to me.

I knew it was coming up, obviously, I had been blogging about it for almost two weeks now, but when he left yesterday it still came as a sort of surprise. In the evenings, my family comes together to pray before we go to bed and last night my mom was praying for my dad and the following thought just hit me.

My dad is up there for me. He's undergoing a bunch of tests like an EKG, ultrasounds, blood panels, etc... for me. If he clears and is able to donate to me, then he'll also be undergoing surgery for me too. It made me almost cry to realize the love that my dad has for me.

My dad was gone a lot when I was growing up. That's what happens when you're active-duty military (he's retired military now). He would be gone for months at a time and then my whole family would pack up and move every 3-4 years. But when my dad was home, he made a point to be involved in our (me and my siblings) lives. Now we don't have to move anymore and my dad doesn't have anymore TDY's so he's able to be home even more than he ever was when I was younger. I love that.

Since my original diagnosis when I was 12, my dad always told me that one of his kidneys had my name on it and that if I ever needed it he would give it to me. That used to annoy me a little bit, but not anymore. My dad is going through donor testing at this moment so I would be pretty stupid if I didn't realize that he meant it every time he said he was going to give me my kidney.

I'm praying so hard that my dad will clear the testing and be able to donate to me. My dad told me the other day that he always wanted to be a hero and this is his way to do it. He's not even scared of the surgery, at all.

My dad already was my hero. My dad can beat Superman any day of the week (because my dad would be smart enough to always have kryptonite with him) and I recently started teasing him that he missed his true calling as an FBI investigator because he just searched my room for some important papers my sister misplaced and found them without anything looking like it was touched. My dad is so cool and I love him so much.

Please pray for my dad. He'll come home tomorrow after testing. He's probably going to be real tired but he'll probably still go back to work the next day as if nothing had happened unless I can talk him into staying home and resting. I am my daddy's girl, and this girl loves her daddy.

Will update as soon as I know anything.

Saturday, August 21, 2010

Still nothing!

Unfortunately, I still have nothing new to report. My blood pressure is still high, I have not gotten the training yet to start home dialysis and my Dad hasn't gone to OU to be tested yet so there's still no progress on the transplant process yet either.

On a positive note, though, I think my body is finally tolerating dialysis and I am feeling loads better. Today has been a very good dialysis day and is probably now my best dialysis day yet.

And yesterday, a friend came to visit and she brought her new baby so I could hold him. It made me sooooo happy and I loved holding him. He fell asleep in my arms and slept almost the entire visit. Nothing melts my heart more than an adorable, sleeping baby in my arms, let me tell ya! This friend also brought me an awesome fashion book to look at and color in, a fuzzy, red blanket (cause I can't ever have enough blankets!), and a bag of Ranch Doritos (My second favorite kind of chips) all in a lime green bag since I'm going through a lime green phase right now. I had a great time and I am so thankful for the Godly friends God has blessed me with. :-)

So... all that to say... As soon as there's any progress on anything I will let you know here. Thanks for all of your prayers and support. <3

Wednesday, August 18, 2010

Nothing new to report...

I didn't blog the last two days because there just wasn't anything to write about, really. No new developments with the transplant process, the switch to PD (home dialysis), or the lowering of my blood pressure.

And there still isn't anything new so I'm writing to inform you all of that fact that there is nothing to inform you of. Yes, I know, my brilliance of logic is astounding. :-p

This week though, I do have some things coming up. Blood work tomorrow which will determine how my levels are doing and if I'm strong enough to start the PD training and can switch to home dialysis. My dad is going to OU to have a bunch of donor tests done to determine whether or not he is going to be able to donate to me or not (I'm hoping and praying that he will). I'm on an additional blood pressure medication that is supposed to be helping but I'm not really seeing that it is but the doctors said that it might take a week before it kicks in and lowers my blood pressure, as opposed to the faster-acting medications that almost made me pass out. My headaches are mostly gone now and when they do come they are less severe than before (even though my BP is even higher than before).

So those will be what I'll probably be writing about sometime soon unless something else happens in which case I will blog about that. :-)

Sunday, August 15, 2010

Big praise!

Today I went to church. God answered yes. It's a big praise and I'm happy.

I'm getting my hopes up again but I do hope that this means I will be able to go next week too. I know I can't judge how I'm going to feel from week to week but this might mean dialysis is helping a little bit and I am on an upswing in my health. That also might mean that I'm getting a little stronger and might mean that I'll be able to switch to home dialysis soon and that might mean getting even stronger and being able to handle the transplant surgery better.

Of course, that's all speculation right now but that's how I have to live my life. I don't know how I'm going to feel from one moment to the next so a lot of my plans, even basic ones like going to church, involve a lot of guess-work and require a lot of flexibility because of my health. But, because I'm in a good mood right now, I'm looking at the positive side of things.

I missed church. A lot. It was good to wear a skirt again. It was good to wear high heels again. It was good to put makeup on again. It was good to look and feel pretty again. My parents, especially my mom, tells me all the time that I look beautiful but my mom also tells me that she thinks I would look beautiful bald. I've never had a boyfriend (and I don't want one, for the record) so I don't dress up for anyone really, I'm just vain and I like to look at myself in the mirror and think "Wow, I look good!" Yes, I know, I'm so vain. I like putting on makeup and dressing in skirts and high heels and that's why I do it. Even when I'm a little dizzy because of my blood pressure or medicine side effects I still wear my high heels because I like to look at them.

I missed the people there too. My assistant pastor and former youth pastor (former for me because I'm no longer in the youth group but he's still the youth pastor) gave me a hug when I walked in and told me how he had been praying that I would be able to go to church today. It encouraged me like nothing else to realize that I was the direct "yes" answer to his prayers. And not just his, but his wife's prayers also and anybody else who was praying. As I have written before, God still would have answered even if I hadn't had been able to go, but it would have been discouraging and I think God knows I've had enough discouragement lately that He gave me a break and showed me that He's still working and using me to encourage others and bring glory to Himself.

I am not living through this nightmare in my life for nothing, I know God has a plan for it and when He shows it to me, in a strange way, it makes it worth it. The trials of getting ready for church, going to church, and coming home very tired and needing to rest were all worth it because I saw how it encouraged someone else.

And it was more than just one someone, actually, it was a lot of someones. I also got to finally meet a new baby that has an incredibly cool name and an extremely bald head making him one of the cutest boys I've ever seen and his mom is planning on bringing him over so I can cuddle with him (insert girly squeal here) I also got to visit with some of my smaller friends that I have missed seeing. The problem with them being smaller is that they grow rapidly so my smaller friends have all gotten a little bigger and more grown up. Even though my hair is drastically shorter and I look a lot different, most of them all still recognized me and one of my favorite little boys made a point to complement my new hair-cut. I love my younger friends! :-)

All that to say... today was pretty awesome!

Saturday, August 14, 2010

BP meds, fashion and hope

What do the three have in common? Uh... I don't know that's just what I felt like titling this. :-)

Still no update on either the transplant or the home dialysis (PD) yet but I do have a relatively small health update before I write whatever else I want. The physician's assistant (PA) at the dialysis center came by today with some new blood pressure medication to take in addition to my current BP med in hopes that it will bring my BP down in the next few days. It works slower so I shouldn't have any sudden drops in my BP and almost pass out like what happened the quick acting medicine that they gave me on Thursday.

However, my current BP medication isn't changing so when I run out of this new medicine than what's to keep my BP from sky-rocketing again if my current medicine isn't doing anything? I don't know, I guess we'll see. I didn't have a bad headache today, though, so I'm glad for that. I want to think that I'm tolerating dialysis better but I usually think that on Saturday because I feel considerably better on Saturday than Tuesdays. I was told this is because of the ups and downs in the blood levels because of dialysis being only every other day and then a two day break. The toxins in my blood are going to start building up Sunday through Monday and then when I go for dialysis on Tuesday the machine is gonna have a lot of work to do stripping my blood of all those toxins. Lovely, isn't it? (Note the sarcasm...)

With that being said, here's what else I feel like writing about. For those of you that do not know, I'm very interested in fashion. I LOVE LOVE LOVE (yes, really love) shoes more than anything, but clothes and accessorizing will hold my attention like nothing else. I did consider the fashion industry at one time but my fascination with this has really become more of a hobby than anything else.

My favorite TV show that I watch whenever I have the chance (which isn't too often, normally, since my family doesn't have cable) is TLC's "What NOT To Wear" and I would happily watch my friends, Stacy and Clinton, radically transform frumpy, unkempt people into stylish, classy members of society all day long if I could. Unfortunately, my favorite show doesn't play very often and I usually only get one episode on Thursdays when I'm at the dialysis center.

This is assuming I have control of the TV, which usually I do, but the center only has one TV every two chairs and I almost got into a battle over the TV with a one-legged man who, I think (I'm giving him the benefit of a doubt, here), didn't think I was watching so he changed the channel. I let him have it until he had to go to the bathroom and then I changed it back to what I was watching. He came back and fell asleep but if he had tried to change it again I told my mom that it was not going to pretty.

Ahem. All that to say, now that I'm sharing the TV with an elderly man who sleeps the entire time and doesn't watch TV when he's awake, I get it all to myself and can watch whatever I want. But my favorite show won't play every time I'm there so I've had to get familiar with some other channels and find something semi-decent to watch. So lately, I've been watching America's Next Top Model by Tyra Banks on Bravo. Bravo has another designer show that I like to watch too but I can't remember what it's called at the moment.

Tyra Banks, for those that don't know, is a retired model and has her own show and her own company and probably her own brand of perfume somewhere too. ANTM was playing reruns today and the show was down to seven contestants and the photo-shoot was going to portray each one as a seven-deadly sin. After applying some ghoulish makeup and changing into their outfits (which were none too skimpy to say the least), the models were lowered into the bottom of an eight-foot grave with their props, and told to display anger, pride, envy, lust... etc. until the photographer got what they wanted.

I was watching this as the nurse was unhooking me from the dialysis machine and we both heard Tyra Banks' second hand guy in the show say "This is the kind of shot you'll see in a high-fashion magazine..." We both said at the same time "That's fashion!?" My nurse, then made a comment about how, if that was fashionable, she didn't want to be fashionable anymore. I agreed.

I realize that they were portraying the seven deadly sins in their shots but they were told to display them "sexily" and to show off their "sexuality" in the shot. And that is where the fashion movement is going today, people. It's been going that way a long time and what we have going on today is a public dressing down of people world-wide and turning people into sex-objects.

Girls are being taught at younger and younger ages to show off their body, strut and flaunt, flirt and wear high heels and makeup. And we wonder why so many women are abused? They may very possibly be provoking their attacker without even realizing it! That breaks my heart for them.

Simple matter of truth, cover up. It's more dignified, classy and professional (not to mention safer with all the sexual predators around today) to wear modest, loose (not skin-tight) clothing that fit you well than to "let it all hang out."

The media is bombarding us with images of ghoulish, half-dressed, sexy looking women (whose photos may be doctored anyway!) and telling us that this is fashion. Here's my answer to them... NO! They say fashion is all about advancement and individuality as well but, in reality, the Industry wants everyone to look the same and buy their product. Mascara commercials show women with a whole lot more than mascara on their eyes (as in, the heavy eye-liner) looking like strippers because that's "fashionable" and that's what their mascara will do for you. Like I want to look like a stripper!

No thanks! I'll make my own fashion and I'll wear it confidently and defiantly of anyone who tells me that I would look better in skinny jeans and tank tops. Oh, and if you couldn't tell from this, I love dress codes too and think that any institution should enforce a dress code to all workers and that all underwear commercials should be banned from Cable TV completely.

And that little spiel went waaaay longer than I thought and I'm probably gonna scare everyone away from my blog with my opinions but if other people's opinions are enough to rattle you than maybe you shouldn't be reading anybody's blog. My hope is that my opinion will help you shape and form your own and that you know you're just as free to share your opinion as I am and if we disagree then let's do so in a respectful manner. Life is too short to spend squabbling over differences of opinion.

I am going to close this post with a request for prayer that I would be able to go to church tomorrow (and wear my "fashionable" clothes! haha!) Last week, I had made plans to go and then I got sick, so this week, I'm not going to say one way or another whether I'm going to be able to go or not because I just don't know right now. I'm going to plan for it and get all cleaned up tonight but when it really comes down to it, I'm not going to know until my mom wakes me up tomorrow morning and asks me if I'm going to go or not. Church is going to take a lot out of me energy wise but I haven't been anywhere except the dialysis center (and the ER once) since my surgery and I am beginning to feel like a caged animal. Trapped and stuck are too adjectives that come to mind right now...

Unlike last week, though, I'm not getting my hopes up. Yes, I'll still be disappointed if I can't go because, unlike what Buddha teaches, we cannot empty ourselves of desire so we will always have some measure of disappointment when we don't get what we want because that's how God created us. You're welcome to believe otherwise if you want (because I will be *tolerant* of you even if you're not tolerant of me... ah, another post for another time) but Buddha is wrong and the Bible is right no matter how you look at it. And I choose to believe what is TRUE even if I'm not seeing that truth in my life because of how dark it is right now.

(For the record... I do NOT recommend America's Next Top Model and I do recommend What NOT To Wear with the caution that they do use mild profanity (mostly blasphemy, unfortunately)

Friday, August 13, 2010

What NOT to say

Since this is my "off day" (meaning no dialysis today) and there's really not much to report as far as progress in the whole transplant process or being able to start home dialysis... I've decided to share the reason I have such a hard time loving people sometimes.

It's because people say stupid things. Especially after they find out you have a chronic illness like kidney disease.

We all do it, though, myself included. Before I needed to use a wheelchair for a time (still do on occasion), I used to get very uncomfortable when someone was in the room sitting in a wheelchair. It was awkward around them, I didn't know what to say, but I wanted to ask what happened, but I didn't want to offend them by staring, so I tried some side glances, and tried to figure out what was wrong myself.... and on and on. I know what it's like to feel awkward around someone who is "sick" and I also know what it means when someone shows you value and respect as a person, even though you're in a wheelchair.

When I needed to use a wheelchair, it was like I had become a different person all of a sudden. People were staring and gawking at me but avoiding me as if I had something contagious. Those that dared to ask, usually asked this way, and it's the number one thing NOT to say.

"What's wrong with you?"

Makes me want to ask "What's wrong with you, dummy!?" Whoa, now, you might be thinking, that's a little extreme. Well... what do you expect from me, I just got asked what was wrong with me. How is that supposed to make me feel? I'll tell you how it makes me feel. It makes me feel like something is wrong with me, that maybe God made a mistake in how He made me because I'm "not like everybody else", that I don't fit in and maybe I just shouldn't leave my house if I'm not going to be accepted by anyone anywhere.

True, that's not what was MEANT by the question but nevertheless, that's how it made me feel. And that's from people who care about me.

So, how do we avoid this number one slip-up? First off, by striking that phrase from your vocabulary altogether. Nothing good starts by saying "What's wrong ------- " in referring to other people. Second, there's an alternative to asking that is much more polite and respectful.

"What happened to you?"

I didn't choose to have a kidney disease, I don't like it and I don't want it but that's what I got. It *happened* to me and if people ask what happened to me, then I'm much more willing to talk to them about my illness than if they stupidly ask what's wrong with me.

The world is basically divided into two types of people: The ill people and the healthy people. Being ill with a chronic disease is like being handed a lifetime membership to an exclusive club that you never wanted to join in the first place. I don't know what it's like to be healthy but I do remember that, when I felt better, I stayed as far away from "the club" and it's "members" as I could. Now, this is my life and I plan to stay as close to this "club" as I can even when I get better. Most people don't know how to relate to the ill but I do.

There will be many more posts like this because there are many stupid things people say and I give you a first hand look at how to relate to someone with a chronic illness. I'm not talking about y'all relating to me, but being able to relate to anyone you come across who is ill or handicapped in some form or fashion. Because you will come across someone else with a chronic illness, I can guarantee it, and if my writing this helps make life a little bit easier for someone else than it will have been worth it.

Thursday, August 12, 2010

Dialysis update

I didn't get a blog post in yesterday so that breaks my running record of seven posts in a row. But, that doesn't matter the point is to just keep up the blog as much as I can and to be sure to post updates about the transplant process.

I really love how this blog is working out and now I'm up to 16 (known) followers. There's probably over 50 people who actually read this blog (if not more) and that makes me feel very popular and special. :-)

Today at dialysis went fairly well and my blood pressure was staying down a bit so I have not been having such a nasty headache today like I have been lately. I did have to get up earlier than normal because on Thursdays I come in early to get my peritoneal dialysis site cleaned and flushed.

For those of you that don't know the differences between hemodialysis and peritoneal dialysis, I wish I could give you all of my stuff to look at because it's way to complicated for me to explain in a blog post. I tried the other day and it just looked like a bunch of medical talk that only people familiar with would understand. I can explain it to you in person with no problem but seeing as how that is not an option right now, I'm just going to explain the basic differences.

Hemodialysis is done with a machine in a dialysis center and the way that is done is through a catheter that was placed in my left shoulder area right near my heart. The blood is pulled out through one tube, cycles through the machine, and goes back into me through another tube. I have no idea if that makes any sense or not but that's the best I can explain it over this blog.

Peritoneal dialysis (PD) can be done almost anywhere you have a clean environment. The PD catheter is placed in my stomach and the fluid for dialyzing goes into my peritoneal cavity. Dialysis occurs through a process of osmosis, ultra-filtration and diffusion using the peritoneal membrane.

These two paragraph is from my PD training manual and makes a lot more sense than I am in explaining things.

"In order for dialysis to take place, there must be a membrane with tiny holes (pores) to filter waste products from the blood. This membrane must be semi-permeable, meaning waste products can pass through but the substances that your body needs will not."

"Peritoneal dialysis uses the peritoneal membrane as an "artificial kidney." This membrane --- also called the peritoneum --- is very thin and lines the abdominal cavity covers most of the internal organs. The peritoneum acts as the dialyzing membrane."

Some people don't want to do PD because it requires some extensive training and the storage of quite a few boxes but it also means a lot more freedom and that, to me, makes PD worth any inconvenience it might be. Everything is all set for me to get the training, and I've actually just got my first shipment of dialysis fluid and equipment needed to start. The only thing was I was supposed to get my training on the 9th... and it's the 14th.

PD requires a special nurse that I will be getting my training from and then I'll have to meet with her once a month to make sure I'm doing everything right. The only problem is that some levels are too low and I haven't been tolerating hemodialysis very well that my doctor wants to wait on PD until I'm stronger. Excuse my bluntness for a moment but that ain't happening! I'm in chronic kidney failure and that's NOT going to get better. Hemodialysis is very hard on my body and it's NOT going to get any easier so the sooner I can make the switch to PD (which is a lot gentler on my body) the better.

So... all that to say, I would appreciate your prayers as we try to get the week in of training for PD at home on the 30th. That's a little farther away than I would like but it's how it's got to be unless I can get it pushed up sooner. I'm a quick learner and I'm not the stereo-typical young person that is living in denial and not taking responsibility for their health. I would love to stay at home and dialyze here, and I think PD is gonna help me feel better than hemo is because it's a different type of dialysis.

To end with a little laugh, there was a dialysis patient smoking a cigarette when I was leaving dialysis on Tuesday and I ranted about him to my mom. (I mean, DUH! Seriously, dude, you have a fistula in your arm, you're on dialysis, you're kidneys have failed... and you're SMOKING!? And you wonder why you're sick!?) Apparently, I wasn't the only one talking about him and so, one of the dialysis nurses comes by and hands me a notice from the management. The dialysis center is a smoke-free building and you cannot be smoking in or around the area because second-hand smoke bothers some of the people on dialysis.

For those of us that weren't smokers, we got a little laugh. I pretended to be upset and told the man next to me that they were taking all our fun away. I hope the man that I saw smoking (right outside the front door, I might add) got the memo. Smoking and drinking aren't good for perfectly healthy people but it's especially not good if you're chronically ill, like most people are in that building, but some people refuse to give it up even if it will end up killing them. And they say Christianity is a crutch...

Ok, so now that I just totally messed that up trying to end this on a happy note, have a good day and don't smoke or drink because it's bad for you. :-)

Tuesday, August 10, 2010


On the way to dialysis this morning, the transplant team at OU hospital called my mom to tell her the results of the second part of the donor testing. This is the part where they match antigens together to see how closely the donor's blood matches my blood, thus resulting in a better outcome of my body accepting the new kidney which means the new kidney has a better chance of lasting longer.

There are six genetic markers/antigens that they look for in the match and a three-antigen match is considered good. Obviously, the more the better and a six-antigen match is considered a perfect match.

My mom is a three-antigen match and my dad is a four-antigen match. That's a bit short of the perfect match that I was praying for but it does mean both of my parents are good matches for me and they are both cleared to begin the more thorough donor testing. However, since my dad was the better match, they're going to start with him first.

He beat me to the punch with this update but that's alright because, after reading some of the comments that people made to his facebook status, I want to dispel a misconception that I was picking up.

First off, this does NOT mean that my dad is cleared as a donor. It means that he and my mom are both good matches with me for organ transplantation. The next phase in the living donor process is for my dad to undergo some rigorous testing, from head to foot, to determine whether or not he can give me his kidney. If something comes up that would disqualify him from donating, then my mom starts the process to see if she can donate, and on down the line of potential donors until one is cleared.

If anything is wrong with my dad, medically, then he's going to know all about it after the tests are done and the transplant team is going to make sure those are fixed before he is cleared to donate.

This is good news but, in my opinion, it's not wonderful news and it's really not much of a reason to be happy as some people were in the comments to my dad's facebook status. Maybe I'm just really cynical but I'm not going to be happy until one of my parents clear for donating, the surgery for both of us goes great, and we are both recovered and back to our lives again. But if you want to be happy over this, I won't stop ya. It is good news and it does give us some direction to follow. It is progress.

In closing, I'd like to ask you to pray that my body will start tolerating hemodialysis better so that I'll be able to start the training for the peritoneal-dialysis (PD) at home. I'll explain the difference to that in a later post but my PD nurse says that they're going to postpone the training until I'm a little stronger. Frankly, I'm not seeing that happening so I just want to get the training over with so I can stay at home.

I'm also having trouble keeping my blood pressure under control. It is way too high and lately I've been getting some nasty headaches after dialysis. Today I woke up with a headache which means my blood pressure is staying way too high even after a few hours of sleep and it shouldn't do that. The doctor's assistant at the dialysis center told my mom to log my BP numbers two to three times a day and bring that log to her on Thursday so she can take it to the doctor and see if they need to adjust my BP medication so if you would also just pray for that as well.

I greatly appreciate your prayers and I want you to know that they are definitely much needed during this time.

Monday, August 9, 2010

Health Update

I am a tad bit better than I was yesterday but I'm still feeling pretty lousy and I'm really bored sitting here in my bed so I figured I would write a blog post and tell y'all. My mom said that if we don't see any significant improvement soon then I'm going to have to go in. "In" meaning either the ER or the hospital but most likely it will be the ER. I'm sure I don't really need to say it but I will anyways, I'd appreciate your prayers that I will get over this virus soon and not have to go in.

Also, the last post had a comment asking me for permission to share this blog and, instead of answering that individual privately, I've decided to put the answer here so everyone can know.

Yes. You are more than welcome to share this blog with anybody you want. That's the reason I started putting updates here instead of my facebook because I had friends of friends who were praying for me but they weren't my friends so they were getting my updates second hand and sometimes third-hand and my information was being skewed sometimes.

This blog is meant to be public but it's also meant more for the people that know me so if you give it to your friend and they don't know me personally than it might not make as much sense to them but they are still more than welcome to read it if they want.

I haven't heard from the transplant team yet but the day isn't over yet so that doesn't mean they still won't call but it's unlikely after 6:00 PM because that's usually when the offices close. My parents can't move forward with the donor testing until we get this second call and find out which is the better match so please pray that we'll hear from them tomorrow. Last week would have been better but today would have been great too. I wish I could convey to them the urgency of getting this transplant as soon as possible and they would be a little bit quicker but they have moved things faster than normal so I will be grateful for that, knowing that most people aren't at this point as quick as we were. Still... I'd really like to hear from them.

Sunday, August 8, 2010

It's always something...

Last night I decided that I wanted to go to church. I haven't been to church since my surgery about three-ish weeks ago and I am really missing it. Before the surgery, Sunday morning church was the only morning I left the house to go anywhere. I had to stop going to Sunday School because it was too early and I wasn't able to wake up in time for that anymore but I was still able to go to the morning service. Surgeries are hard on anybody but they're even harder when you feel real bad to begin with so it would be an understatement to say that the surgery took a lot out of me.

I haven't been able to go anywhere except the dialysis center, and barely even that. the last two weeks, though, I have been feeling really good on my two "off days" (meaning the days when I don't have dialysis) and I was just waiting for my chance when I felt well enough to go to church. Last night, I decided I was and made up my mind that I was going to go to church on Sunday in the morning.

Yesterday my stomach was kind of bothering me, but I just ignored it, thinking I ate something weird. But I knew exactly what I had eaten because I'm not eating very much these days so it's real easy to remember everything that went into my mouth on any given day and what I had eaten yesterday had not caused me any trouble before so why should it now? Sure enough, at about 3:00 in the morning, I made a trip to the great white throne and decided that I would probably not be going to church. I was right.

I don't want to gross anybody out and scare you away from ever reading my blog again so I'm not going to tell you what is wrong with me but I will tell you that it is something that I have dealt with before. Actually, several times before so me and my mom knew exactly what was wrong and we have the medicine to take care of it. I do have some advice for you, though, that will help in preventing you ever catching this nasty stomach virus, that you may take or leave as you want.

First off, be very very very very (ok, you get it) very vigilant at washing your hands. History shows us that the Jews were spared from the plague during a time of rampant uncleanliness simply because they washed their hands and they washed things that were shared between them. Avoid touching your face (eyes, nose, and mouth specifically) unless your hands have been washed. (Supposedly, this helps keep your face from breaking out, too.) You honestly can't wash your hands too much, and if frequent washings dry your hands out, then get a good moisturizer and don't let up on the washings.

Another piece of advice, avoid taking antibiotics if you can help it. I had a blood infection last year that they still aren't real sure of exactly what it was so they gave me seven IV bags of antibiotics. While it took care of the infection, the several different kinds of general antibiotics also wiped my body clean of any and all bacteria. Some bacteria is bad for you but some is good and when your body doesn't have any then you become extremely susceptible to the virus I am now currently battling, again.

Doctors prescribe antibiotics, sometimes first without finding out what is wrong, because they work and they work fast. So whatever is wrong may clear up simply because of the administered antibiotic(s), as in my case last year. But when you ask "is the antibiotic really necessary?" the doctor may tell you "No, but I just want to give it anyway." In which case me and my mom say "No, thank you, we don't want it if it's not necessary." Ok, not actually those exact words but that's basically how it all goes down.

Doctors are NOT gods and they don't have the answers to everything. You can question them, and should. Don't get me wrong, I'm not a doctor/hospital/nurse basher by any means. I love most all my doctors and nurses and have been very blessed by the medical practitioners I've been in contact with in my lifetime (and that's been a lot!). I do, however, get very annoyed at the people, especially the older generations, that blindly follow the doctor's advice without asking any questions, doing any research or getting any second opinions.

You (I'm pointing a finger at YOU) are the sole person responsible for your health. If you're old enough to be reading this blog, then you're old enough to start being responsible for your health even if your parent may be the prime person responsible for you at this time. If you're healthy, don't take that for granted because you can lose your health easily. Don't believe me? Ask the man I see at dialysis on Thursdays who was completely healthy until his kidneys just up and failed on him. That could be you.

Alright, I think I'm done speaking from my soapbox... until tomorrow, that is.

On a bit of a happier note, I am pleasantly surprised at how popular this blog has become in such a short time. I've kept several blogs but none of them have been so widely read as this one. I'm kicking myself for not starting something like this sooner since y'all seem to enjoy reading it. So, as long as I'm able, I'll keep it up and let y'all know what's going on.

And I'll finish this with a couple of prayer requests. The first one is, that I'd really like to hear from the transplant team tomorrow on the second part of the donor testing me and my parents did last week. This will determine which of my parents is a closer blood match and which one of them will begin the rest of the donor testing. The sooner the better.

Secondly, that I'd get over this virus quickly. There is an antibiotic specifically targeting the stomach and it helps take care of this. I'm also taking a probiotic so whatever good bacteria the antibiotic wipes out, the probiotic will replace so I won't be left susceptible to any other bugs or viruses. Sadly, this virus has pretty much ruined my two good days that I would have normally had and it kept me from going to church this morning like I wanted to. I have absolutely no energy reserves so when something like this comes along, I'm wiped out and mostly unable to get out of my bed. I spend most of the week in bed because of dialysis and I got used to my two off days being spent out of bed, which isn't going to happen this week, I guess.

Thank you for the prayers and thank you for your support during this difficult time in my life and my family's life. :-)

Saturday, August 7, 2010

Don't know what to title this...

Basically, this is just a random blog post because I feel like posting but I don't really have anything specific to write about which is why I don't know what to title this. Oh well!

Today was a really good day, the best day I've had in a while. Usually dialysis days are not happy days but last night when we were praying together, my sister and mom both prayed that today would be the best dialysis day I've had yet. And, praise the Lord, it was. You hear all the time that "Prayer works" so much so that it has become a cliche. I hate, loathe, and despise platitudes and cliches so much that I start mumbling sarcastically under my breath whenever I hear them nowadays. So I'm not going to gush "Prayer really works!" because, the truth is, prayer ALWAYS works, it's just sometimes we don't get the answer we want. Today, God gave us the answer we wanted and I'm very grateful for that. But sometimes God doesn't give an answer that I wanted and yes, sometimes I get mad at Him for that and I'm not very quick to be grateful during times like that. Prayer still works, though and He still answers.

I also got to visit with my Grandpa and uncle as they came by to pick up my dad and brothers to take to my other Grandpa's gun range and shoot guns off for the afternoon. I didn't get to spend very much time with them before I had to leave for dialysis but I did get to spend some time with them when they got back. I'm slightly jealous I didn't get to go and shoot guns for the afternoon but my mom promised me when I get to feeling better, we'll have a girl's day and go shoot guns with my Grandpa at his range for the afternoon and I'm looking forward to that! :-)

My Grandma, when she was here last, wanted to do something special for me and my sister so she worked her magic and found awesome comforter bed sets for me and my sister. Eventually, I will post a pic (I know, I know, I keep saying that!) and show you because they are amazing. Mine is better than my sister's because it's mine and that automatically makes it better. Hers is black and white zebra stripe sheets with a reversible black and white polka dot comforter. Mine is hot pink with black zebra stripes and I am going to find some lime green pillows because I love lime green and I want them. Yep... be jealous people, you know you want some lime green pillows with your pink zebra striped comforters. ;-)

Also, a special friend called me today and asked me if I would like her to get my blog all set up with a cute background and everything. She knows me well enough that I knew she would pick out something great and... she did! Within the hour, actually, she called me back and told me to look at it and tell me if I liked it. I don't know about you but I love it and I think it's perfect and exactly something I would have picked if my internet filter hadn't been acting up. Words can't express my gratefulness to this friend for doing this for me. Thanks Cinderella! :-)

So... I think that will do it for today. So far I've been able to post every day since I started this blog and that's a record for me in my life's book of Guinness records. Little things like that make me happy and, as long as I am able too, I'll keep posting every day when I can... just because I can!

Friday, August 6, 2010

Transplant Update

I slept really good last night/all morning. It makes me happy when I can sleep uninterrupted for hours and hours at a time. Not that it makes me feel better or more energized but it helps keep me from being cranky and it just feels good.

My mom is like my own personal nurse, however, and she comes in to check on me periodically just like a nurse would in the hospital. Sometimes my mom even takes my vitals too (Blood pressure, temperature, etc.) but mostly she just looks in on me until she thinks I've been sleeping too much and then she'll wake me up to eat or drink something.

This afternoon, she woke me up and told me I needed to drink some water... but my water bottle was empty so she went to go refill it and while she was gone I dozed off. I woke up to her practically shoving the straw down my throat. Ok, not really but she was sticking the straw into my mouth and it startled me awake. She just laughed...

That's not the update though, I just wanted to tell y'all how I woke up. After my mom tried to kill me with my water bottle she sat down and told me that the hospital had called with half of the results back from our appointment with the donor testing.

There were two parts to the test: The first part was to take my parents blood and mix it with mine to see if there is any negative reaction. If there is, then they wouldn't be considered as a donor because my body would reject the kidney. If there is no reaction though, then it's fine to move ahead as a donor.

The second part is the genetic testing to look for matching markers in my parents blood and mine. The closer the match, generally, the better as far as my body not rejecting the new kidney and it's lasting longer.

We were called because they had the results from the first part of the test which is a little bit more important than the second part and we got good news. My parents blood had absolutely no negative reaction to mine, which means they can both be considered donors. Now we are just waiting on the genetic testing to see which one is a closer match and then that parent will begin the rest of the donor testing.

I'm lucky to have both of my parents willing to donate to me. Some people wait on the kidney transplant list for years before they can get a kidney, usually from someone who has died. But I am truly blessed because my parents are willing, my siblings are willing, my aunts and uncles are willing, my friends are willing, even strangers are willing when they know I need a transplant!

I haven't written much about dialysis yet but I can tell you this, the dialysis center is a grim place and I'm not going to spend years and years there. I sit in a chair for four hours while a machine qcleans my blood, doing only 1o-15 % of what a healthy kidney does. I go three times a week and the days when I have dialysis wipe me out so bad that the days when I don't (like today) I usually spend resting and gearing up for tomorrow. It's an endless cycle of ups and downs that I'm told I'll get used to... but I don't want to ever get used to this.

I am praying one of my parents will be a perfect match and that I'll be able to get the transplant before the new year and I would appreciate your prayers as well.

Thursday, August 5, 2010

Celebrities and Dialysis

Today I had dialysis and it was actually a pretty good day compared to the last several dialysis days. I think my body is finally starting to tolerate it better and I'm hoping it won't make me so sick and wiped out from now on. I also got up earlier than normal, surprisingly, and did well with that too.

I got up early because I was getting my hair cut short... shorter than it already was. Shorter than I've ever had it before. So short, me and one of my brothers were trying to decide who had more hair. I won, of course, because I didn't go THAT short but I think you got the idea that my hair is short. I will post a picture someday soon but all I can give you for a description is that it looks like Tinker Bell without the bun. :-)

Anyway, I went to the beauty salon before dialysis because if we had gone afterwards than I would have been too tired and worn out to do it because that's what dialysis does to me. So there I am, at the beauty salon getting my hair cut by my really sweet hair stylist who came in early so she could work with my schedule, when this other lady comes in and sits down waiting for her stylist to show up. Me and my mom were talking to my stylist and sort of giving her an update on things and how they were going when this lady pipes up, "Excuse me? We have a nineteen year old on our prayer list at church that we were praying for a kidney transplant... is that you?"

I smiled at her and gave a little wave. As far as I know I'm the only nineteen year old on dialysis needing a transplant in Wichita Falls so... yes, that was me. She was very surprised and she moved over to talk to my mom and get some info to tell her church. They had my first name too which further solidified that I was for sure the girl on the prayer list.

Her stylist arrived and she patted my leg as she walked by, telling me I'm going to do just fine. And when I left she actually got up, with her hair cutting cape still tied around her, and came over to ask me for a hug.

I wondered if this is what celebrities must feel like.

Wednesday, August 4, 2010


Well, the first post is always a bit awkward but I'm just gonna jump right in and tell y'all what this blog is all about.

First off, I must say that I don't have the blog anywhere close to what I want it to look like right now so if you're looking around thinking, "Wow, this is ugly!" let me just say, I agree with you. My internet filter is acting up and locking me out of the editing sites I need to change the theme and I got too frustrated to deal with it right now so, until I can get that fixed, I'm just going to say that the blog is under construction (which is true.)

Secondly, I will tell you what this blog is going to be about and why I started it in the first place. Apparently, people like hearing about my life (especially the part about my kidney disease) and they want to know what's going on (especially the part about the transplant process) so here is a place where I can tell them and be as detailed (or as vague) as I want. Obviously this blog is meant for people that already know me so I will probably skip the whole "about me" stuff and just give health updates and answer questions and vent frustrations and whatever else I want since it's my blog and I can do that.

So here's the official welcome and I will write more later. :-)