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! :-)