Tuesday, December 21, 2010

Doin' my happy dance!

After a ridiculously looooong, long morning up at the OU hospital (and getting up at an insane hour, bleh!) I am back home and sharing my happy news with everybody.

But before I get to that, I'll tell you first that the appointment was my best one yet. Kidney function was even better than last time, had a few levels that were still a little low but nothing major or difficult to fix. (I just need to eat more... go figure)

Bad news, I still need to be on the bloodthinner shots that are really painful because there's still some concern about the blood clot and the risk of having more clots in places like one of my kidney's veins that would ruin it and I'd end up back on dialysis. Obviously, I don't want that to happen so, after a bit of a break from the shots, I'll probably start back on that tonight. But me and my mom are going to try something different and, I hope, be able to find a way to make them less painful. I think I only have to be on them for about a month, maybe a little longer.

Ok, good news (Drum roll please!) I don't have to wear a face mask anymore! :-D My doctor said that my white blood cells were high enough to fight off infections and colds so as long as I keep my distance from coughing/sniffling people, wash my hands frequently, don't touch my face, and just practice overall common sense, I don't need to wear it anymore.

So... what that means is that I can go places now without putting up with strange looks or, if I decide to take it off, long lectures from well-meaning people. I won't feel like I have a bright red, light-up arrow pointing at me telling everyone that I was/am sick and/or different and/or not "normal" etc, etc. I think I can handle to ouchy shots if  I can start getting out more without getting "the looks."

Yes, I know that's not true, most of it is all in my head (I overthink things too much) and I had a good talk with my friend (who got me all my super cute masks, by the way) that was helping me regain my courage to try and venture out again despite what happened at the volleyball game. I was planning on going to church in January and going to the Heartland National Church Planting Conference, with my mask. But now, I don't have to! :-) Yay!

And just in case anyone is wondering, all my awesome cute masks will be hung up on my wall so I can still look at and admire their cuteness, and to remember how wearing them feels so I make sure not to make others feel that way.

Sometimes life is hard. It is tough to be tough. But God gives good moments too. Sometimes life is good. And I may struggle being grateful for the hard things when I don't see that they have any purpose, but I am grateful for the good things in life. Happy news from my doctor saying I don't need to wear a mask anymore, is one of those things. An early Christmas present from God. :-)

Friday, December 17, 2010

That's how it is

Yesterday, I decided to make my debut back into the real world. That means I went somewhere that didn't involve people wearing white lab coats and/or scrubs, hospital waiting rooms and exam tables covered in paper that crinkles loudly whenever you move. I went to... a volleyball game.

Ok, so my siblings practically got on their knees to beg me to go and came up with every reason they could think of to convince me of why I should go. They didn't have to do much convincing because going out to a volleyball game to watch my siblings play sounded a lot better than staying home by myself watching a movie or playing my iPod.

I had envisioned a fun day, watching my siblings play and cheering loudly for them, having enough energy to stay out the whole day, and not having a lot of people come over to talk about kidney/health related stuff. Of course, I expected them to be happy to see me and ask me how I was doing but because we're at a volleyball game, they're going to have other things to do so then I wouldn't have to get into some long conversation about how I'm feeling, how long I was surgery, how's my dad, how's my mom, how's the family, were you back for Thanksgiving, Christmas is going to be wonderful for y'all this year... You get the picture.

And there was no reason that it shouldn't have gone the way I had hoped, except for one thing that stood in my way. The mask.

Yes, the dreaded face mask that I'm supposed to wear whenever I'm out of my house around other people. For some reason, family members don't count, I guess. My brothers, kind-hearted as their intentions were meant, were all going to wear masks with me so I didn't have to do it alone. But the two that were playing quickly found a reason to ditch the masks before we even went in the building and the last little brother made it through the front door but lost his as soon as he got the first odd stares. It's not easy being different.

I was able to keep my mask on with a few people outside the gym, but as soon as I walked into the gym and found my seat on the bleachers, I couldn't take the looks anymore. Even though my mask was cute, even though I had an important reason for wearing it, even though I didn't know half of those kids in that room... I was too caught up in what people thought of me that I didn't keep it on. And then... I wished I had just stayed home because what happened next made me wish that the earth would have just swallowed me whole so I could disappear.

First, my parents were not happy with me at all and I got ugly with my mom about it. I'm grateful that she loves me, no matter what, and forgives me when I come into her room at night to ask for forgiveness for my attitude because I can't sleep knowing I was nasty to her about something that wasn't even her fault.

After that, a well meaning person decided to come sit right in front of me and ask if me and my dad were being good patients. Obviously, at that moment, I was not being a "good patient" and she then made sure to point that fact out to me by teasing and "harassing" (her words) me. And that was all before the first game even started! Things didn't get better after that. Let's just say, I got a huge lesson in self control and a reminder that being a responsible adult is not an easy thing. I never wished more that I could just disappear then I did during those two and half hours (give or take, not sure of the exact time) sitting on those painfully hard bleachers.

After the game, my mom brought me home, even though my siblings still had to practice afterwards and she was going to shopping with my dad. And that's what happened when I went out somewhere "non-hospital" and was trying to avoid staying at the house alone. As I was taking my shoes off in my room, alone in the house, thinking over the events of what had just happened and how hard things had been when all I wanted was to go cheer at my siblings volleyball game, I started to cry. Mostly because I was angry but partly because I was sad at how my "perfect, fun day" turned out. Then I watched a movie with the volume turned up loud so I couldn't hear myself think anymore.

Because of that, I have decided not to wear a mask anymore except to the hospitals. And my parents aren't going to take me anywhere (except to the hospital for appointments) for the next six weeks that I'm supposed to be wearing a mask. I don't expect anyone to understand but I just thought I'd let you all know that you won't be seeing me again for another six weeks unless I wear a mask and/or my parents let me go with them.

Life is hard, sometimes. It's tough being tough. I don't always feel like "hanging on" anymore. Maybe my decision will change, maybe I won't care so much about what other people think (or what I think). But for now... that's how it is.

Monday, December 13, 2010

Home... for now

I got back home yesterday afternoon. My mom was very nice to me and canceled some things she had planned on Saturday so we could stay an extra day at the RMH and I could heal up a little more. I definitely needed that.

The two hours in the car were still uncomfortable and a little painful but not as bad as it could've been if we  had left Saturday or Friday evening. (shudder)

And, once again, I can't sneeze without feeling like someone just hit me in the stomach. Ouch! You never realize what little things you take for granted until you don't have them anymore, like the ability to sneeze. With the transplant surgery, sneezing was sort of my measuring stick as to how quickly I was healing up because if I sneezed and it didn't hurt *too* bad, then I knew I was getting a little better, but if I sneezed and it felt like my stomach was ripping open again... then I knew I was still pretty bad and healing up was going to take awhile.

So, we'll see how long before I stop feeling the all to familiar aches and pains of this "minor" surgery and when I'll be back on my feet again. I can only get better from here, right? I hope that's a yes, seeing as how I don't have any more tubes, catheters, and lines they can pull out of me now...

I have another appointment sometime next week, not sure of the exact date but I'll be sure to blog about how that turns out. I'm going in for some bloodwork tomorrow and I also have to meet with my dialysis nurse here to do some kind of closure thing for the books since I'm not a PD patient anymore. (Thank God!) Kind of looking forward to going back to that place and not have to need any more treatments and sit for long hours watching my blood (and everyone else's, for that matter) circulate through a machine...

I think that's all I have to blog about... just wanted to let y'all know I was home... for now

Friday, December 10, 2010

Just like I thought it would be...

Well I made it through this last surgery... Barely. But it is sorta nice to know I was right about most of what was going to happen which means my stressing out wasn't totally unfounded. From the doctor's point of view, the surgery went great and everything looked good. From my side, it hurt almost as bad as when they put it in and I've been very naseaus since waking up in recovery and throwing up feels like my stomach has just been ripped open. Not at all close to what I was repeatedly told it was going be like by the doctors, nurses and family members. Also, you would think after doing this for so long that we would know what to expect and how to plan for surgeries but nooooo... This week really could not have gone worse for me unless, of course, something had gone wrong and I had to be hospitalized. I was not ready for this emotionally or physically for this surgery and we have to be back home tomorrow evening and I'm not healed up enough to spend two hours bouncing around in a car. Ugh, talk about frustrating! And the worst part is that I was starting to feel a little more better and now the rug has been pulled out from under me and I've got to start the recovery process almost completely over again. Sigh.......

Sorry this is so negative right now. I usually wait till the mood passes before posting but I needed to update and let y'all know what happened so, like everything else this week, I didn't have the luxery of waiting. Time has definitely not been on my side.

So, there you have it. I'll post again after I get home, either tomorrow night or Sunday.

Wednesday, December 8, 2010

Just so y'all know

I'm back at the Ronald McDonald House again anxiously waiting for another surgery tomorrow morning to remove my stint and my dialysis catheter. Very minor, all outpatient, the actual procedure should only be 20-30 minutes and I'll be back at the RMH probably before lunch. But that really doesn't help my nerves any and I don't think I've ever been more stressed in my life than I am right now. It's just too soon after my last, very traumatic and painful transplant surgery and I wish I had more time to recover and prepare for this than I've had.

So that's really all for right now. I'll try to write an update tomorrow and let y'all know how it went.

Thursday, December 2, 2010

Time for an update, maybe?

It's been a while since I posted any kind of update so here is one, finally!

Yesterday, me and my dad both had appointments so... at the ungodly hour of 5:30 in the morning, my parents and I jumped in the car and made the trip to Oklahoma City, my home away from home.

My first appointment was at the vascular clinic to talk to the doctor about the blood clot in my neck and was told that this was a provoked incident, I'm not at risk for recurring blood clots unless I have similar "situations" such as catheters or central lines in my body and I only have to be on treatment for two more months and not the rest of my life. Yay. Actually, other than hearing mostly what I already knew, the doctor was very informative and told me and my mom a lot about veins and arteries and fun stuff like that. Very interesting.

Then I headed to the transplant clinic and waited forever before being called back into the waiting room and met with some of my favorite nurses and my surgeon. Everything with my kidney is working just great and I'm healing up just fine. Still dealing with the after-math of C-diff but otherwise, everything is fine.

Then, because my dad had an appointment and I would have been really bored, my friend came to get me and take me to another friend's house for lunch. I stayed there almost all day and had a really great time. I love my friends. I have the best friends ever!

I also now know where to get cute, fun face masks that I actually want to wear instead of wearing an ugly yellow mask that doesn't match anything I wear, gets hot, stuffy and sweaty, and makes me look like a contagious aids patient or something. Guess? Korea! Because over there in Asia, they wear face masks all the time and actually have very cute, soft jersey knit face masks that are washable and reusable and actually match my outfits like an accessory and don't look ugly.

My friend knows some missionaries in Korea and asked them to get her some fun, cute face masks for me and gave them to me yesterday. Other than getting to see her and my other friend, getting those made my day. I'll post some pictures of them soon. :-)

Well... I think that's all I have to say right now. My other surgery is exactly one week from today, on the 9th. Me and my mom are planning on staying at the Ronald McDonald House again for a few days with that but I'll post again when the plans are finalized, before we leave.

Today was my one month anniversary for the transplant surgery. Doesn't feel like it's been one month but that's one month down and five more to go before "full recovery" according to my nurses. Sooooo ready for this year to be over!

Hope y'all had a great Thanksgiving! I did :-)

Tuesday, November 23, 2010

I'm HOME!!!

Surprise, surprise! We were given the go-ahead to come home and be with my family again. :-)

I had an appointment today and so did my dad. It was great to see him again and my little brother came  up too. Because my dad still can't drive just yet, my uncle brought them up and then... we were told that, since Thanksgiving is coming up, all the offices are going to be closed and I don't have any appointments until the 1st of December I could go home and we can continue my appointments long-distance like we used to do when I was younger.

So, we decided not to tell anybody and I was able to surprise my sister. I wish I could have caught her face on camera because it was so funny, I've never seen her that surprised! My other two younger brothers aren't home yet so they are still yet to be surprised when they come back and see me and mom. Oh, and the dogs were pretty happy to see me, too. It's nice to be missed. ;-)

My stint and PD catheter removal surgery is scheduled for the 9th of December and I'm so NOT looking forward to that. I know I'll be glad to get this last tube out of me but it's gonna happen just when I'm getting over this transplant surgery and starting to feel a little bit better and then I'm going to have to be knocked flat on my back again and be asking for more morphine... ugh! But if all goes well with that, it will all be done as out-patient which means I shouldn't have to be hospitalized unless something bad happens.

That's my happy news of the week! Looking forward to sleeping in my own bed and going to church again and being able to go out and getting back to school as soon as I'm able to.

Hope all of y'all are having as good a day as I did!

Wednesday, November 17, 2010

About time for an update!

I was in the blogging mood so I finally made myself come out and use the community computer because my laptop's power cord broke and my computer is dead and my iTouch doesn't work very well with blogspot so this is the second best way (albeit a little uncomfortable because of the chairs...) to blog and keep y'all informed about what's happening.

I'm still a little sick in my stomach from all the antibiotics but it's getting better and I'm able to keep up with my hydration so I'm just hoping the medicine will work and I'll get over this finally.

A big concern right now, apparently, is my weight. I guess the doctors just noticed that I lost a little bit, which is to be expected with major surgery and two hospital stays and severe dehydration, but now they're telling me to keep a food journal and be eating something every hour so I can get back the weight that I lost and be able to actually gain some weight. Yes, I know, most people are trying to lose weight but trust me, it's really not that much better on the flipside when you're severely underweight and you can't gain enough to stay and be healthy. Just the same as trying to lose weight to be healthy and if you really want a guaranteed way to lose weight fast, go into kidney failure, try chemotherapy or have some other life-threatening illness that involves naseau and a lot of hospital visits and you'll start dropping the pounds off quicker than you think. Or you could just eat less and move more... might be easier for you. ;-)

My magnesium, whatever that is, is also low and I was specifically ordered by my doctor to eat some chocolate which will also help in gaining some weight and raise the magnesium. I love chocolate so I was more than happy to follow that order. :-)

The pain is lessoning every day and I'm able to move better but I still can't sneeze without feeling like someone just punched me in the stomach and it's really unsatisfying to feel a big sneeze coming on and have to stifle it because it will hurt. :-/

On a bittersweet note, a dear family from my church is up here at the RMH with us because their six-year old little boy had to have a back surgery. He had his surgery today and the surgery couldn't have gone better from what I hear but he's having a bit of a hard time recovering and my heart just breaks for him. That's the bitter part. The sweet part is that his family is here and we're able to walk together during our trials and the oldest boy came home with us and we're hanging out and watching "How To Train Your Dragon" and maybe some BandRock 2 later. It's been great to have someone to hang out with and to play with because I have been getting so bored being here by myself and getting really homesick for my family and my church so it's really nice to be able to have some friends actually staying here. Just please be in prayer for their little boy, I've been thinking about him all day.

And that's gonna be all because I'm starting to get really uncomfortable in this chair and I'm longing for my couch back in my room. I'll try to blog again soon! :-)

Saturday, November 13, 2010

Minor setback

Once again, I am out of the hospital and in the comfort of the Ronald McDonald House. I updated my Facebook page regularly but I'm not really able to update here from my iTouch because the keypad is so  small and I want to be able to write big long updates so FB is easier but now that I've got my laptop back I can update here and let y'all know what's happened and what's going on.

Wednesday morning, I had a routine appointment, met with the nurse, met with one of the doctors on my surgeon's team and then went back to the House where I promptly collapsed, completely exhausted, on the couch and watched TV for the rest of the evening. I was sooooo tired, unusually tired. But I told myself that it had to be because of the appointment and the major surgery I had and I have absolutely no energy for anything right now. (except TV watching because that's easy!) I tested positive for C-dif again. (You can read a similar post about my dealing with this before right here.)

I was starting to feel a little dehydrated but I was drinking tons of water and I thought I would be able to keep my fluid intake up enough but as soon as I went to bed, I lost the hydration battle. I tried to remember to drink whenever I woke up to roll over or go to the bathroom or whatever but the two hours between bathroom trips when I was sleeping was enough to fall way behind the power curve and I woke up with very familiar symptoms.

Getting dehydrated happens often and C-diff has happened often in the last two years every time I've gotten antibiotics. And, by the way, the hospital was told specifically to treat me for C-diff and they didn't think that was "necessary" and all I have to say to them is "I told you so!"

Anyway, Thursday morning was just supposed to be a morning appointment with a doctor who came in to see me about the blood clot in my arm from my old hemo-dialysis catheter. Instead, I ended up feeling so sick to my stomach and I was dry heaving because I was so dehydrated I didn't have anything to throw up. I also couldn't eat or drink anything and my eyes felt (and looked) like they were being sucked into my head.

So we called and I was admitted right away and, eventually, they got an IV into my arm and, as has happened before, within 30 minutes I was feeling better already. So I had four bags of IV fluid and I had my PD catheter drained and flushed yesterday and today because there was blood in the tube and we needed to make sure it was just from the surgery and not any internal bleeding.

Aside from some added medications, everything was fine with my new kidney (affectionately called Lefty and my dad named him. Long story...) and we caught the dehydration soon enough before any damage was done to Lefty. Actually, Lefty is working a little too well right now and he really should pull back a little bit because I'm having trouble keeping up with him. :-/

My surgery site is fine, my dialysis access site is fine, I'm moving around better every day and the pain is continuing to lessen. The C-diff is being taken care of, I have my appetite back, I'm out of the hospital... Physically, I'm doing alright and there's not really anything to report on that end. Emotionally, not so much.

I have the hardest time relaxing and calming down after a hospital stay. When I'm in the hospital, I can't sleep and if I do happen to get some sleep, it's quickly interrupted by a nurse coming in the middle of the night to take my vitals or draw blood or whatever. All day long, doctors, nurses, techs, teams, dietitians, pharmacy agents and visitors are all popping into my room, mostly unexpected but at least some of my visitors call and ask before they come.

So now that I'm out of the hospital, it's hard to... stop, I guess. Stop being tense, stop always being on guard, stop trying to brace myself for the next needle poke, IV medication, the next tube being pulled, the next nasty medication to be given, the next blood draw, the next feeling of pain. Even though I know that no one in scrubs or a white lab coat is going to walk through my doors, I have the hardest time calming down and not *feeling* like someone is.

Just in case you were wondering...

On a totally different note, a family from my church stopped by to visit (and yes, they did call and ask before they came.) and it was really great to see them. They cheered me up so much by bringing me an awesome vase of flowers that looks like an ice cream shake (complete with a cherry and a hot pink straw!) and I was also serenaded by a wonderful rendition of the Veggie Tales song (God is Bigger Than The Boogie Man) and received a beautiful hand drawn picture (in crayons! I love crayons) that I taped to my wall so I could look at it. They also gave me a bag of chocolate and I was actually told by my doctor that I needed to eat more chocolate (which I'm more than happy to comply with!) That was the highlight of my day! The second best thing that happened was getting out of the hospital.

Some prayer requests would be obviously, that I can hang in emotionally. There's another reason why I'm in such a funk today and it involves a place that's very special to me and most of my very close friends that I haven't seen for a while were all there this weekend and instead of being there with them, I was in the hospital with an IV in my arm so that was enough to knock me down a couple notches today. Also, continue to be praying for my recovery. I'm out of the really critical week for a rejection episode but that still could happen and I'm praying hard it won't happen at all.

Another would be to pray for another family in my church who are coming up soon because one of their little boys is having surgery. Something I'm looking forward to is that they are going to be staying at the Ronald McDonald house with us and that will be very encouraging but it's not good that the little boy is having surgery so please be praying that everything will go fine for him and his family while they're here.

Continue to be in prayer for my dad as he is still recovering. The lack of energy he has is hard for him because my dad is such a hard worker and having to rest is difficult for him. But he has been very good about listening to his body and resting when he needs to. He'll be coming up for his check up soon and I'm looking forward to seeing him.

Thank you for your continued prayers and support. I'll try to keep y'all updated as much as I can so you can know what's going on.

Tuesday, November 9, 2010

On the road again

To recovery, that is! It's a road I've traveled before but this road has had quite a few more bumps and ditches and roadblocks than before and I'm sure I've got a lot more bumps, ditches and roadblocks ahead before things smooth out but, I am moving forward and I am getting (dare I say it!) better.

Every day, I'm noticing improvement and when I sit still and not move for five or ten minutes and my stomach stops hurting (or after a shot of morphine!!) I can feel a difference in my body. I can tell things are different, something is working right, I'm.... "normal" again.

But then I move my leg or I laugh at TLC's "What Not To Wear" and then it hurts and I have to readjust and position my body so I'm more comfortable and wait until it stops hurting again. And that snaps me back to reality that I've still got a long way go.

I am finally out of the hospital and back at the Ronald McDonald House chilling out and trying to stay calm and keep comfortable. I'll probably be up here a while for medication adjustments and in case I have any episode of rejection, they can catch it fast and stop it before I lose my new kidney.

I am on TONS of medications and a blood thinner injection once a day thanks to the clot I had waiting in the left side of my neck from my old hemo-dialysis catheter. By the way, the clot is breaking up, slowly but surely, and my left arm and leg is only slightly swollen. I don't know how long I'm gonna have to be on all the medications but I'm supposed to be on the injections for three months! Have I mentioned how much I hate (hate, hate, HATE!) shots? I hate shots. I will be able to taper off some of the medications over a couple months time until I get to around 3-5 different anti-rejection meds that I will be on for the rest of my new kidney's life (which, I hope, means the rest of my life!)

I had an appointment today and I wore my lovely (NOT!) yellow mask and got a lot of funny looks from a couple of people. When you sit in the transplant center, everyone is talking about transplants and you quickly realize that quite a few people there have had fairly recent transplants and (shock and horror!) they are NOT wearing a MASK! HELLO!? This might sound very harsh but if you don't care about your health, then don't even bother going to the hospital. If you're gonna get a transplant but you aren't going to wear your mask, take your medications, manage your weight and control your diet than you shouldn't be allowed to get one and all possible donors should be discouraged from giving to you. Ok, rant is over but I'll probably write more about that later.

I'll probably have another appointment Friday or next week on Tuesday. Otherwise, not a whole lot is going to happen so I'll pretty much just be hanging out in my room and wearing my mask when I have visitors and watching lots of TV and movies.

In other news... when we came back to the RMH, the house manager stopped us and told us that tomorrow there will be some kind of news crew here interviewing the staff and some off the people that stay here and the house manager asked me and my mom if we were interested in being interviewed. Me and my mom were both more than willing to be interviewed and to help the RMH in this way. It's exciting and I hope it works out to be able to do it. It will be something fun to look forward too! I'll write more about it tomorrow.

And... other than just being very sore, and trying to remember no one is coming in with needles or scalpels to cut stitches and pull drains or make me walk down the never-ending hallway, gritting my teeth because I feel like my stomach is splitting open. My legs aren't shaking so much anymore because I'm not feeling absolutely terrified of more pain and more trauma to my already battered body. Emotionally, I'm not feeling so freaked out, insecure, stressed, discouraged, frustrated, angry... whatever!

I'm on the road to recovery. It's a long road, a hard, bumpy road, with a lot of twists and turns and ups and downs. But I am recovering and I am getting... B.E.T.T.E.R.

Sunday, November 7, 2010

Day 3 update

Finally, an update from me! Thank you Julie for updating for me, I really appreciate it.

I'm feeling a little better today, not in nearly so much pain but I am still very very uncomfortable. I guess everyone who has had a transplant or knows someone who did either actually did have things easier or they forgot how painful it is.

I kept hearing that I was going to feel like a brand new person every time someone heard about my transplant and I Was hoping more than anything that it would be true. Unforutunately life s full of harsh realities and I'm having to deal with some major discouragement, a lot of pain and when I'm not in pain, a lot of uncomfortable situations.

I've dealt with a little set back by the discovery of a blood clot in my jugalar vein in my neck probably as a result of my hemo-dialysis catheter that I wish I never would have had and never really worked right anyway. So I'm on some anti-coagulation medications to break up the clot but that's really risky because I just had surgery and they don't want me to bleed to death. My left arm is swelled up and looks awful and my left knee is a little puffy too. Nothing we can do about it until the clot dissolves.

I also have to start taking off my bandage from the site and that is going to hurt like crazy and since I'm trying to lay off the pain meds (there's some other reasns but I don't really need them as much anyway since it doesn't hurt too bad)

Today I'm going to be moving from the ICU to the surgical floor where my dad stayed. The
tentative date for my release is Tuesday and I'll be able to get my Foley catheter out tomorrow and I'm literally counting down the hours to get that thing out of me.

So, just so y'all don't think that everything is terrible, my creatinine levels are almost completely normal and I have no dietary restrictions whatsoever. a tually, the kidney is working so well, I've comletely flip-flopped on levels that were too high before and now they're too low so all the things I wasn't supposed to eat before, I'm being told to eat them by the doctor and dietition. Yay! One small comfort.

Overall, the whole experience has been very disillusioning and disappointing and extremeley painful and I don't know that I would have done this is I knew what was going to happen exactly. I just hope this kidney lasts a good long time because I probably won't be willing to go through this again.

I would definitely appreciate prayers for the clot to break up, that the bandage would come off relatively painlessly, that I can get some tubes and drains out of my body tomorrow, that I would be able to walk without a walker and with less pain, and that I can get out of here Tuesday. I'm also dealing with a lot of emotional stuff that is making everything more difficult so please just pray that i'll have enough strenght to hang on longer.

I did get some sleep last night and that was really important. I feel a bit better and I'm hoping I'll be able to sleep tonight. My dad is on his way home right now so that will be hood for him. He was discharged yesterday and he is doing well. He ecovered much better than I did and he is actually enjoying his battle scars. We sure earned them after all this junk we had to fight through...

As always, we appreciate all your prayers and support and I'll continue to update when I can. Because I'm on my itouch, I can't link to facebook so that's why you might not see them there. Hope you have a good day and you enjoy being out of the hospital.

Thursday, November 4, 2010

Update #2

Praise the Lord! The surgery went as well as expected. Kristin arrived back in her room about 8 o'clock p.m. and both she and her dad are resting in there rooms.  She is trying to sleep off all the grogginess caused by the anesthesia. The doctor said the kidney was already functioning well before they sewed her up. If everything goes well, Kristin will be in the hospital for the next 4-6 days. Pray for a good nights rest and quick recovery for Kristin and Mr. Stevens!

Update #1

Kristin was taken back to the surgery holding room about 15 minutes ago. They took her back earlier than they normally do because they wanted her close by. It looks like it still be another forty-five minutes to an hour before surgery. The kidney isn't even out of Mr. Stevens yet, and once they get it out they will clean the kidney up and then get started on Kristin.



Well, this is a quickie post just to let y'all know what's happening. My dad is already about an hour and a half into his surgery and I'll be called back in probably another hour for mine. They had a few... issues but they got it all straightened out and they told us that he was doing fine. He looked good when I went in to say good bye to him.

We're all doing fine, unusually calm, although I am a bit naseous but I'm not sure if that's because of nerves or if it's because I haven't eaten anything for a while. Other than that, I'm doing fine, everything just feels very surreal and sort of like a dream.

My mom is with my grandparents right now and I have a friend waiting in the surgery-prep room with me. Her name is Julie and she's gonna be updating my blog for so that my mom won't have to.

I'll call her as soon as I'm able to and she'll let y'all know what's going on, so that's just a heads up.

Thanks for all you prayers! It's only a matter of hours now... :-)

Wednesday, November 3, 2010

It looks official!

Well, it looks like everything is official. Me and my dad had our pre-surgery appointment yesterday. The short story is that me and my dad met with the doctors, nurses, surgeon, anesthesiologist, and had about ten tubes of blood drawn each. Then we were told that everything came back great, nothing to hang up or delay the transplant and everything looks like a go for Thursday. Afterwards, I went to a friend's house and we watched movies (but didn't finish them) and talked and I almost fell asleep before another friend who had come to hang out with us took me back to the House. She hung out with me there for a little bit before she had to go and then me and my parents wathed Toy Story 3 before going to bed.

The long story is a lot more frustrating and... Longer. And since I'm bored, I'll tell it. The appointment was at 9:00 in the morning, which meant I needed to get up and start dialysis at 8:00 and I needed to do my next exchange at least at 12:00. I was hoping that we would be done by 10:45ish so I could go over to chapel at my college (Heartland Baptist Bible College) by 11:00. By 10:30, we were almost done but we just had to get our blood drawn, meet with the anesthesiologist, and my dad had to get a chest x-Ray. Yeah, even if we didn't have to wait at all they still wouldn't have been done by 11:00.

On top of that, the surgeon apparently didn't get to talk to us enough when he had seen us that morning so he had the nurse call us back over to the transplant center so he could talk to us more. At that time, it was already 1:30 in the afternoon, I didn't eat breakfast and we were still at the hospital during lunch so now I was starving, I was sad that I missed chapel, I was late for dialysis and, because I had dressed for chapel, I was in a suit the whole time and was now very uncomfortable. Although, I did get a lot of complements dressed like that instead of in my usual tee-shirt and sweatpants but I really missed my sweats because I was freezing almost the entire time because it's like a rule that hospitals are supposed to be cold.

Finally, when we got out of there, my dad had VA appointment across the street and me and my mom went to McDonalds because I was getting cranky, dizzy and shaky from not eating and I sat inthe car waiting for my friend to pick me up and take me to her house. I was supposed to do dialysis in the car but the bag, after almos six hours, wasn't warm enough when I needed to use it. So I went without dialysis until 6:30 and I think I'm paying for it now because I'm feeling sick this morning and after such a ridiculously long day yesterday, I'm too tired to go to my college for lunch. Bleh!

So, today we are just hanging out until tomorrow morng when we have to go to the hospital atthe crack of dawn (5:00 AM!!!) and we aren't allowed to eat after midnight tonight so I'm making sure I get a snack before midnight in case nothing happens for a couple of hours and I don't want to starve while I'm waiting.

My dad is going to go first and before his procedure is done i'll be under anesthesia already waiting for my surgery. It will take around 8-10 hours (4-5 for each of us) before the surgery is over.

The hospital has wifi so I'll try and post tomorrow while I'm waiting my turn to go into surgery but no promises. I will post as soon as I can but don't be alarmed if you don't hear anything for a few days. More than likely it just means I'm sleeping off the anesthesia. :-) Thanks for all your prayers! We will see what happens tomorrow

Monday, November 1, 2010

The journey has started!

After a very long, sleepless night (because my nerves were acting up, I guess!) I woke up to a very long and very stressful morning of packing and rushing around the house trying to make sure I had everything I needed, saying goodbyes, stepping in an ant hill and having my feet swarmed, me and my parents were finally off at about 2:00 this afternoon.

We arrived at the Ronald McDonald House about an hour ago and just finished eating dinner. This place is amazing! It's even nicer than a hotel, our room is like a mini-apartment and the whole place is just like one big house. I think I'm going to really like it here! :-)

The only thing I forgot is my laptop which means I'm gonna have to use the RMH's computer to blog but that shouldn't be a problem, it's a nice computer and I'm not even sure if they have wifi to begin with so I probably couldn't post on my blog from my room anyway.

So, this is just to let y'all know that I'm here and everything is fine. The trip went as smoothly as it could have gone, we didn't forget anything majorly important, and tomorrow me and my dad both have pre-surgery appointments which means I don't have anything on Wednesday (except stressing out about a surgery the next morning! :-/ ) My friends are gonna come and visit me tomorrow afternoon and I'm pretty much just gonna hang out for the next three days. I'll keep y'all updated as much as I can! :-)

Sunday, October 31, 2010


Tomorrow I leave for Oklahoma City... TOMORROW!? Yes, tomorrow. I knew it was going to come up fast but it's still hard to believe that I only just heard about my transplant about 20 days ago... Some days just sort of felt like they were dragging by just to spite me. Some days it was like I blinked and they were gone. And now, it feels like I had just heard the news and now I'm leaving.

A part of me doesn't feel ready and the other part has been ready since April when I first knew I needed a transplant. One part of me wonders whether I can emotionally handle everything that could happen and the other part knows that God will give me the grace when I need it so I can handle anything that comes my way. One part of me wants to scream in terror and run away as fast as I can while the other part of me wants to scream and run TOWARDS this "monster" with my sword raised high, ready for battle. One part of me is majorly stressed out while the other part is extremely, unusually calm. Sometimes I want to cry, laugh, scream with fear, squeal with excitement, be angry, be happy, be sad, be joyful, be depressed or be encouraged.

Obviously, I'm having very mixed emotions about all this. I'm pretty sure that's normal (I hope it's normal!) so I'm not worried about it. I also wonder if it has anything to do with the fact that I'm a girl and can get very (no, VERY) caught up in my emotional roller-coaster at times. (But that is normal, for sure!)

It's weird to think that this will probably be my last blog post from home unless I post one up before I leave tomorrow but I was thinking of waiting until I got to wherever we are staying tomorrow night (Still not quite sure on that) and that way I could write more about the trip and everything since I'll have actually experienced it.

So, here's to a whole new adventure that's starting tomorrow. Tomorrow... I need to finish packing!

Saturday, October 30, 2010

Birthdays, packing, cleaning and panicking!

The title says it all...

Yesterday, my favorite sister in the whole world turned 18 yesterday and got her driver's permit. She's pretty much awesome and the best little sister ever. She's also incredibly beautiful (No, seriously... the girl is drop-dead gorgeous) and everyone loves her because she's so sweet and nice and funny. (If you ever want a laugh, watch her play that "ninja" game... she's hysterical!) We had a great time celebrating her birthday and, instead of a cake, we had cream puffs. It was quite an amazing feat to get all 18 candles into one cream puff but she did it (and almost caught herself on fire because the flame was so big!) and she loved the necklace I bought her. She's actually wearing it right now. :-D

And because my sister is so amazing, she's helping me pack. Actually... she's doing most of the packing because she's also trying to clean the room and getting my stuff out of the way helps her clean better so she's a lot more motivated than I am. :-/ I usually don't pack until the day before I leave so I wasn't going to start until tomorrow but my sister likes to pack days before so that's another reason why she got started now.

I'll be leaving Monday afternoon and I'm not exactly sure where me and my parents are staying before the surgery but I guess my parents know and I'll just go along for the ride... On Tuesday, my dad has his pre-surgery appointment and I have mine on Wednesday. Then I'll be back at the hospital on Thursday, bright and early at 6:00 AM (which means I've got to get up even earlier! Gah!) and the surgery will happen sometime after that and... beyond that, I don't know what else is gonna happen.

I'm actually not really THAT panicked... just a little. I think it's more just the whole stress-from-not-knowing-what-will-happen kind of thing. Not much I can do about that but it's not as bad as it could be so I'm just "hanging in" until something happens... and that "something" is gonna happen in only 5 more days! I can use one hand to count how many days I have left now. :-)

Thursday, October 28, 2010

7 days left!

Exactly one week from today and I will get my new kidney. It's coming up fast, people! Sometimes it feels like too fast and then, at other times, it doesn't feel fast enough. Sometimes I wish I had more time to prepare, and then other times, I wish it had happened yesterday.

At this time next week I will already have gone through the surgery, woken up from the anesthesia, and (knowing me) will probably be watching TV in the ICU... a little (or a lot!) sore, more than likely, but feeling (I hope) very well, better than I've ever felt and getting better by the minute.

One of our case-workers (or a social worker, I'm not really sure.) called today to let us know that they have a spot reserved for us at the Ronald McDonald House near the hospital which will be where me and my mom are staying while I recover. My grandparents are going to take my dad back home as soon as he recovers and then he'll come back up for his two-week check-up to make sure he's doing fine but me and my mom will have to stay up there for at least a month, probably, because I'll be having check-ups and medication adjustments for a while afterwards.

I went to Walmart today (I know, I know, I'm not supposed to be out.) to get some necessities and some things to keep me busy... namely, a new pack of crochet hooks because I seem to have lost most of my other ones, and a skein of lovely, thick, purple yarn that I think would make a great knit scarf if I reteach myself how to knit again. Since I usually crochet I kinda sorta forgot how to knit and the scarf won't have the look I want if I crochet it. I decided that I could get a lot done since I'm not going to be able to do much else (not that I do much now...) and I can knit and crochet while watching TV and movies, which is probably what I'm going to be doing a lot of while I'm up there...

On a much happier note, I found my iTouch! I've decided that it's just a God-thing that I found it, and it's probably a God-thing that I lost it too, because I really don't know how it could have fallen out of my pocket and I have no idea how it ended up in the corner of my room by my dialysis chair, either. But, whatever, the point is, it was lost, and now it's found, and God let me find it before I went and spent almost $300 on a new one so I would have it when I was at the hospital. :-) And me and my mom had a great talk in the car about how God expects us to respond in situations like this and what having a grateful attitude really means... but that'll be for another post at another time. ;-)

7 days left!

Tuesday, October 26, 2010

When you're in the valley

The last two days I've been watching some videos from The Skit Guys, and I came across one they did that I found very relevant to what I sometimes write about on this blog.

If you haven't seen it, go watch it, if you can, because I write about it in the following paragraphs and it might not make any sense unless you've seen it first.

It's called The Mourning Booth and it shows a man who is in a "valley" (spiritually speaking) coming into a restaurant and sitting in the booth. The narrator says that you're either "going into a valley, in the middle of a valley, or just coming out of a valley." The man meets with several different people in his booth who say or do all the wrong things for someone who is in the "valley." Things like trying to make the man laugh by telling jokes, or reading that "All things work together for good" from the Bible, or saying things like "it's time to get over it and move on."

Eventually, everyone leaves. They don't want to stay in the "valley" any longer than they have to. It's as if they're scared that if they spend too much time in the "valley" then they'll get stuck there or something. It seems like they do everything possible to get whoever it is in the "valley" out and if they can't, they leave. I don't think they mean to abandon their friend but sometimes that's what happens. They don't notice the deep, emotional pain that person is in and if they do, they don't know how to help, they feel awkward and uncomfortable, so they don't do anything, or they make it worse by asking insensitive, nosy questions or quipping platitudes and cliche's to try and make them feel better.

But watch what the waitress does at the end. She's pouring his coffee and glances over, seeing that he's in great, emotional distress. Instead of sitting opposite of him, she slides in next to him. He scootches over to give her more room and she silently sits next to him. Mourning with him, sharing in his grief, supporting him in the "valley." Chances are, she's in her own "valley" too, or she just got out of one and remembered what it felt like.

This past week, I have had friends that have said things to me like "How are you really doing? You don't have to smile if you don't want to. Please don't feel like you need to pretend around me. If you don't want to talk about that then just tell me and we'll talk about something else instead. I love you very much, my friend."

You wanna know what encourages me the most? That. It's as if you just sat down next to me in my Mourning Booth, slipped your arm in mine, and walked with me a few steps through my valley. I hope, I pray, I'm almost out of this valley but, chances are, I've got a bit more miles to walk before I'm through.

 To every thing there is a season, and a time to every purpose under the heaven: A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted; A time to kill, and a time to heal; a time to break down and a time to build up; A time to weep, and a time to laugh; a time to mourn, and a time to dance; a time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing; A time to get, and a time to lose; a time to keep and a time to cast away; A time to rend, and a time to sew; A time to keep silence, and a time to speak; A time to love, and a time to hate; a time of war, and a time of peace.
Ecclesiastes 3:1-8

What those other people were trying to do in the video clip... yeah, there's a time for that. Sometimes, watching a funny movie or telling a few jokes may be what somebody needs at that moment, taking them out shopping might be what helps get their mind off their troubles, taking time to remind them of the truths of God's word over a cup of coffee may give them encouragement and comfort, and, sometimes, telling them that they need to move on (lovingly, of course!) may be what they need to hear to help get them out of their depression and back into life again. Everybody is different, though, and the bottom line is that we weren't made to handle these valleys on our own. Be willing to come alongside someone and walk a while with them in their valley and maybe they'll be the ones to walk with you in your valley.

Monday, October 25, 2010

10 days left!

Approximately 10 days... 240 hours... 14,400 minutes... 864,000 seconds... until November 4th when I get my new kidney.

But who's counting! :-)

And this time next week, I will either be driving to or already in Oklahoma City. Me and my parents leave for OKC next Monday (Nov 1st) so that we will be up there in time for our pre-surgery appointment on the 2nd. Then I guess we'll just hang out all day on the 3rd before leaving at the crack of dawn on the 4th to go get checked in and await the surgery.

From what I hear, most of my family is going to try to be there. My grandparents, my aunts, my uncles, maybe some cousins... It will be almost like Christmas getting us all together in one place. I don't know how much we'll get to see of each other because after the surgery I'll be moved to Intensive Care for a few days and I don't think they let visitors in for very long but they'll be able to see my parents and my grandparents are going to take my dad home when he's discharged after two or three days.

My mom is reserving us a slot at either the Fisher House or the Ronald McDonald House so she has a place to stay while I'm in ICU and we'll both have a place to stay for the next month or so when I'm discharged but still needing tests, lab-work and medication changes done and I need to stay in the area. One of my friends is gonna bring me a lot of movies to watch so I can keep myself occupied while I'm recovering and I will be bringing my laptop so I can continue to blog. ;-)

10... more... days...

Friday, October 22, 2010

Second by second

Now that I'm supposed to stay home and keep myself well (as in, not any more sick than I already am) I want to go out. Before, when I should have been getting out more, I was cranky and I didn't want to go out anywhere, it was too hard to schedule dialysis around going out, and I was definitely being anti-social because people only wanted to talk to me about kidney-related things. I'm sure I frustrated my parents by being so stubborn and (basically) refusing to leave the comforts of my house and now... I'm going out because I want to be out.

Maybe someone should tell me I'm not allowed to eat and then I'll be so hungry I'll eat more... :-p

I promise, though, after the concert tonight, I'll stay home. Except for maybe church on Sundays, if I  feel up to going. 

In other news, plans are being made and things are actually happening. I don't feel like I'm sitting around waiting for nothing, anymore. I don't have to worry about my dad not clearing. I don't have to wonder what I'm going to do if this happens or that doesn't work out. My life no longer feels like it's drifting aimlessly out in the middle of nowhere. I have a goal, something I can visibly see, something tangible that I can move towards. 

I spend a lot of time in my room and it's usually quiet enough that I can hear the second hand on the clock ticking. It used to discourage me to hear that sound because I knew that each second I heard sounded off was a second of my life spend sick in bed, and I literally felt like I was wasting away. Now, I love to hear the  clock ticking because I know with each tick, I am one second closer to being off dialysis, one second closer to getting well, one second closer to being able to do things again... one second closer to getting my life back. It's going to be a GREAT Thanksgiving this year.

13 more days

Thursday, October 21, 2010

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.

Wednesday, October 20, 2010

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.

Tuesday, October 19, 2010

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.

Friday, October 15, 2010

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. :-)

Thursday, October 7, 2010

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! :-)

Wednesday, October 6, 2010

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

Saturday, October 2, 2010

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.

Thursday, September 30, 2010

A good day

Today was a *good* day. Any one who has chronic health problems will know exactly what I mean. Physically, I was feeling pretty well and since my emotional state tends to be closely related to how I'm feeling physically (not all the time but mostly) I was feeling happy today too. Seeing as how yesterday, I was NOT feeling very well physically or emotionally, today was a nice change. Especially since I had to go out today for an appointment and when I feel good, I have enough energy to go other places afterwards.

What was kind of funny though, is that I used to have good days and bad days, and I could usually tell which is was going to be as soon as I woke up. Now, classifying my days as either good or bad depends on if the good moments of the day outweigh the bad moments. I don't think I'm explaining this very well... maybe I'll have to write about it in more detail later but the point is that when I woke up this morning, I didn't feel well and I was really cranky and tired. By the time I needed to leave for my appointment, I was feeling way better, much more perky, more awake, and was not dreading going out.

This is the first time I've been out of the house since I got back from the hospital two weeks ago. I had an appointment the day after I got home and I have stayed inside every since. I like my house, I like my bed, I like being comfortable and I don't feel like going anywhere. Actually, I don't even WANT to go anywhere at all. Ever again. I'm going to live out the rest of my days in my bed with the zebra striped blanket, lime green pillows and all my electronics, books and movies, eating cheetos and writing on my blog. Haha, as if.

No, actually, I've just been too tired to go out anywhere and it's annoying to try and schedule my dialysis around going out anywhere and making sure I'm not out longer than four hours at a time or that means having to do a dialysis exchange in the car (it's possible, I just haven't tried it yet).

I did have to go out today though because of an appointment with the surgeon who does the dialysis accesses (i.e. Fistulas, grafts, catheters, ports etc.) He didn't put in any of mine but he was the one who took out my shoulder catheter for the hemo-dialysis and he just wanted to look at the site to make sure it was healing properly and everything like that. After he looked at my shoulder and told me that everything looked great, he then proceeded to tell me that I should probably look into getting a fistula in place since having a catheter anywhere (like I did before) is extremely damaging to my veins and we want to save them for as long as possible and that a fistula would be a good idea to have in case, for whatever reason, I can't do PD anymore.

So, quick crash course on what a fistula is: That's when they take a vein and fuse it with an artery in order to make a big enough area for dialysis. It takes about 4-6 weeks (if I remember right) to grow together, re-route the blood flow and become strong enough before it can be used and it's a highly visible, very ugly and scary looking lump on the arm. The size and location varies.

For anyone who has ever seen me in person, I am very tiny. One nurse described me as slender because she said it sounded better than skinny. Slender, thin, skinny, tiny... whatever, you get the picture. As such, I have very thin arms. A fistula is going to make my arm look deformed if I even have big enough veins to do one. All that to say, this doctor is going to schedule a "vein-mapping" appointment (which, in all honesty, I should have had this done LONG BEFORE I even started considering dialysis), and this will determine if my arms are even capable of a fistula or if I'll need a graft or another catheter stuck in my shoulder or neck. Ugh... makes my head spin.

On the plus side, though, if I get a fistula, then I'll actually have a very cool, visible scar that I can make up a story about and show people. All of my other scars from dialysis and the transplant aren't really in places that I can show off, modestly, except for maybe my shoulder. Yes, I know, I'm kind of weird like that but I figure if I've got to have surgery, or tubes stuck in me or fistulas or whatever, the least I can get back is a cool scar that I can make up a story about and see if people will believe. The fistula scar looks like a shark bite and that's what I would tell people who asked about it just so I could get a laugh about it. Then I'd tell them the truth... maybe. ;-)

After the appointment, we went to Walmart to pick up some things and I saw some of my nurses from the dialysis center. I almost didn't recognize them out of the center but they were at least still in their scrubs because if they had been wearing anything else I probably would have had no clue who they were since I only ever see them in their scrub uniforms. It was nice to be able to say hi and visit a little bit without being in some sort of medical facility. That's where I want to see my nurses, but usually I see them because I'm back in the hospital again.

As an ending note, I am amazed and humbled at what this little blog is doing. The last few comments I received made me cry. I was confronted with my selfish attitude of not wanting people to know about my illness, trying to pretend this doesn't exist and putting up a front to hide my real feelings and rendering it impossible for God to use me to bless others and I hindered God being able to use others to bless and encourage me because I wasn't willing to share. The very fact that I'm reaching and encouraging more people from my bed while being practically house-bound than I ever have in the last 19 years of my life, during most of which I was much more active than now, simply astounds me. Thank you all, for your continuing support and prayers. I may not always reply to every comment, but I do read them all and I read them often. :-)

Wednesday, September 29, 2010

While I'm waiting

I'm waiting
I'm waiting on You, Lord
And I am hopeful
I'm waiting on You, Lord
Though it is painful
But patiently, I will wait

I will move ahead, bold and confident
Taking every step in obedience
While I'm waiting
I will serve You
While I'm waiting
I will worship
While I'm waiting
I will not faint
I'll be running the race
Even while I wait

I'm waiting
I'm waiting on You, Lord
And I am peaceful
I'm waiting on You, Lord
Though it's not easy
But faithfully, I will wait
Yes, I will wait

I will serve You while I'm waiting
I will worship while I'm waiting
I will serve You while I'm waiting
I will worship while I'm waiting
I will serve you while I'm waiting
I will worship while I'm waiting on You, Lord

- John Waller

I was looking back over my blog posts and realized that I write a lot about waiting. And then I realized that I have had to spend a lot of my life waiting. In fact, I would describe this time in my life as a *waiting* period because there's nothing else I can really do except wait.

This song popped into my head and I wanted to post the lyrics. It's the song from the movie Fire Proof and it has such a powerful message to me, especially now, that I've always loved to listen to it.

Today was kind of hard for me. The last couple of days I've been having trouble sleeping, which is why, as you may have noticed, that the last couple of posts have been at all sorts of odd hours of the morning, like this one. When I have trouble sleeping, I have trouble waking up. And if I don't wake up in time to do my first dialysis exchange in the morning, it throws off my entire dialysis schedule. Plus, I'm exhausted by just waking up and getting out of bed so, obviously, I'm not doing much with my day except sleeping and eating. Lately, I've been so tired I haven't even wanted to take a shower because it feels like too much work for me.

This has been a sort of set-back for me because I was starting to feel better and things seemed like they were looking up. In a word... I'm overwhelmed. This entire transplant process has driven me up the wall with anxiety, the thoughts of what COULD happen, the questions of what I should do, trying to plan for different scenarios, etc. Dialysis is the biggest pain in the neck and I hate that I have to even mess with it in the first place. And then there are all the "life" questions that I have, should I try to re-enroll in college now or wait till after the transplant (whenever that will be), what can I do now while I'm sitting in my bed most of the day, can I start going back to church again or should I just stay home, etc.

Some of these questions, ok, well, actually MOST of these questions are based on fear. There's a reason God tells us in scripture to "FEAR NOT" because it's a very natural response to the circumstances and situations we'll have in our lives. So I'll admit it freely. I'm scared. Terrified, really. There are no certainties or guarantees that I have that the things in my life are going to turn out ok. Yes, I have a promise from God that says He will work everything together for good, but that doesn't say anything about me getting to see that good. Chances are, I'll probably never fully understand why I had to live through this nightmare until I get to Heaven and can ask God in person to show me the big picture and let me see for myself everything that He did through me that showed His power and glory to the world. I want to know why? I want to see the good that He promises so I know that my life wasn't wasted.

In the meantime, though, I wait. I don't have a choice NOT to wait, but I definitely have choice as to HOW I wait. And I will serve Him, while I wait. And I will worship Him, while I wait. Even though it's painful, even though it's scary, even though it's hard, I'll still wait.

What are you waiting for? How are you waiting?

Tuesday, September 28, 2010

This is taking f.o.r.e.v.e.r.

My parents went back up to OU today to meet with Dr. Sindwhani (Yes, he's Indian and yes, I probably just totally misspelled his name.) Dr. Sindwhani is the head transplant doctor and the guy who will be performing to transplant surgery... whenever that actually happens.

As in most cases, this doctor overbooked his appointments and my parents ended up waiting three hours before they were seen. This is the last step before my case is presented to the transplant committee but before that happens, this doctor wanted to double-check a few things. Apparently, one of my dad's tests showed that his kidneys were spilling protein... which is a sign that the kidneys aren't functioning as properly as they should. It could be nothing... it could be something... it may not disqualify him as donor... but it might.

This doctor is sending the test results to the kidney doctor my dad saw last Wednesday to have him glance over it and make sure he didn't miss it in his evaluation and to get his opinion on it before they clear him as a donor and present the case to the committee. My mom said it was a two-hour drive and a three hour wait just to get some papers read, hands shaken and told "We'll call you when we know anything."

So, once again, we wait. I was praying that I would get this transplant before New Year's, which could still happen, but I'm thinking it probably won't. The hospital system basically has two speeds, fast and very slow. If it's life-threatening, they're moving as fast as lightning and everything gets done as soon as possible and surgeries are scheduled for the next day and medications are brought on time. But when you aren't dying... you're gonna have to wade through all the red tape the system can think to throw at you, and everything seems to move in slow motion. You ask for an appointment and it's weeks away, you ask for them to write some prescriptions and it takes forever.

Even though they have moved my case faster than usual, things are still going ridiculously slow and at this point, I STILL don't know for sure whether or not my dad is going to be able to be my donor or not.

On another note, I can't find my Hind's Feet on High Places book. I brought it with me to college and now I really am not sure where it could be. As soon as I find it, though, I am going to reread it and write some posts on what I read to share here.

I don't know if you can tell or not, but I'm trying to take my blog much more seriously and be more faithful at writing for y'all. It continues to amaze me when I see that I have one more "follower" or someone comments to tell me that they've been blessed and encouraged by my ramblings. I have no idea how many people are reading this, or how far this little blog might go. But seeing as how I've got all the time in the world right now, I might as well start writing more and putting up pictures and basically just open this window into my life up a few notches more so y'all can share a part in the crazy journey called life.