Got the call!

Hey All!

Worked until 3am this morning and as I was ending my shift report I got the call for my liver transplant. I am currently at Hopkins waiting for the surgeons to look at the liver from the donor and see if this is going to be it or not! Holy cow...this is really happening.

When the call came my heart literally flipped 4 times then dropped to my foot. Thank GOD my coworkers were there to comfort me as I bust into tears when I talked to my mom shortly after. This is such a crazy experience... I can't even explain it.

So I am in the Marburg building (the ritz carlton of hospital units) so I'm pretty happy about that! It's beautiful here and amazingly sooo quiet. I was posted for OR time around 10, but we are past that now...so we will see whats happening. I'm staaarrrving but cannot eat, it is so brutal this waiting!

I have literally been up for 24 hours as of 1pm today..so this blog probably isn't making much sense but I wanted to update everyone. This is what I have been waiting for. The gift of a healthy life. This is what is meant for me...

Here we goooo.... (hopefully)

I will update as much as possible.

XX, R

Short and sweet

Hey Everyone!

Gonna make it short and sweet this time. I'm at work patiently awaiting day shift to get here...I am sooo sleepy!

So what can I tell ya? Obviously still have the same crappy liver. I am starting to think the docs lost my number! Where are you perfect A Negative Liver?

Hanging out a lot with my parents, starting to prepare myself for the big day and of course the recovery after. I wasn't going to buy a Halloween costume this year because I figured I'd be in the hospital and now it looks like I'll be around..so maybe I'll get to enjoy that..even though handing out candy to all the munchkins is the best part.

Work has been busy but good...way too many kiddos with H1N1. I missed the first round of vaccinations for it and praying everyday I don't catch it. My immune system really needs a break from bugs!

I am in the process of figuring out how to post some pics to this thingy..so stay tuned. Hope everyone enjoys the rest of the weekend. I'm actually kinda glad the Ravens have a bye this weekend since I'm working it! Bring it Denver!!!!!!

xx, R

Hi everyone.

Another fever today :( And another day of work missed. Monday morning after I worked all weekend night shift, I started with a little bit of chills. Checked my temp and it was 99. Slept for only a few hours because I had to run errands and had plans on my one day off before the Ravens Purple event. I was tired, but felt ok and no chills or anything. Came home from the the event (which was awweesome by the way) and fell asleep. Woke up around 530 AM shaking and so cold. Took my temp, 102.5. This JUST happened to me, thought I was better...now I'm feeling awful again. I literally feel like my body is cooking its self. Why is this happening to me? I'm once again so frustrated.

This used to happen to me like about once a month....and now it happened two weeks ago and happened again. Am I getting sicker? I don't know. I kinda wish I had my labs drawn right now to see what my liver function tests, and bilirubin are. It can't be good if this keeps happening.

Doctors still telling me anyday now....and as positive as I've tried to be through all this. I am so ready now. I wish they'd call me right now...and I would head off to Hopkins with a huge smile on my face. I'm so tired of being tired, tired of waiting, tired of not being normal...and tired of being sick.

On a side note, I really enjoy the new show on CBS "Three Rivers," it is a medical drama that is all about organ transplantation. Now it is not completely accurate...but I feel like it gives a pretty good idea of how the whole process goes to those people that don't understand it completely. Check it out and let me know what you think.

Hoping to kick this fever soon.

Rach

An explanation!!!

YAY! I feel better and NO FEVER!!!

I emailed my hepatologist when I started with the fevers. Since my case is sort of complicated, I want all of my many doctors to be in the loop with what is going on. I told him all of my symptoms and everything that occurred over the past couple days. He called me this afternoon and told me why these random fevers keep popping up and what the cause is. Since I have Primary Sclerosing Cholangitis I am at risk for acute cholangitis.


Since my bile ducts are narrowed, the bile has a harder time flowing through them which can cause sludging or build up...which can then in turn cause infection. This is what my doctors think that I have intermittently. Sometimes it can self-resolve and the fevers will go away on their own, sometimes you can get even sicker to the point where it is very serious, and sometimes all you need is just an antibiotic. This time my body chose the last option. Cipro is what they gave me...and I'm already feeling better!! It's good to finally have an answer. Thank goodness.... I gotta get back to LIVING and out of that darn bed (but it is so amazingly comfortable)!


That's all for now, back to work!!

Rachael xx

a few steps back...

Hey everyone..

Currently I am laying in bed with a 101 degree fever, with lots of chills and back pain. BOOO! I am so angry this happened right now. We just buried my grandfather yesterday, and I am beginning to have the feeling of being a peace, and then I spike a fever. It's so frustrating to me because like I said before, this past month I have felt my best...and now I feel like I'm taking two steps back. Not only am I bummed to feel like crap again, I HATE missing work. We have on calls, so everyday I am out, someone has to come into work for me. That is never fun when you are looking forward to a day off. The whole weekend I was out on bereavement which someone had to cover, and the first day I am scheduled to go back to work, I can't. I feel like a burden to my unit and it really sucks. Luckily, I work with the most amazing and supportive group of nurses that are very understanding. (Thanks guys if you are reading this!)

Why I have this fever, I don't know. About every couple months I seem to have these random fevers. Oddly, it seems to be after I have over done or over worked myself. Since about last Thursday, I haven't been sleeping well and my appetite has been next to nothing. Usually, these fevers seem to resolve on their own and it basically is my crappy immune system reminding me to take it easy. Frustration!!!! I want to LIVE these next few days/weeks/months before this major surgery...not be laid up in a bed with a heating pad. I want to live my life as close to normal as possible.

I have tried for awhile to not make this transplant stuff overcome my entire exsistance and being, but it's kinda hard not to let that happen. This is my life...this is a huge deal and obviously a huge part of who I am.

I want to say thank you for all of my readers. I never expected to hear such a great response from so many people..."I have really enjoyed reading your blog." That was so good to hear. Welcome to all of the new readers!

And one more thing, I cannot say thank you enough to everyone for all of the support I have recieved not only in the past week with my grandfathers passing, but through everything...especially this transplant journey!

---R

sad weekend...

Friday morning, Heaven gained another angel. My grandfather..otherwise known as "Pop," passed away peacefully. He had a very rough last few weeks and he is now in a better place. A place without suffering..a place where he can breathe without struggle and do all of the things he hasn't been able to do in a long time since he has been sick with emphysema.

My family from Florida got into town last night and we are spending much needed time together. Looking at pictures and talking about all the good times. It is good to have some laughs. And all of the support from my friends and co-workers has been absolutely amazing. I am extremely blessed to have such people in my life.

The arrangement information is as follows :

William Greives... viewing at DudaRuck funeral home 2-4 and 6-8 Monday, tomorrow the 27th. And the funeral is at the same place at 12pm. In lieu of flowers, please make a donation to the American Lung Association.

I'll never forget all of the memories... teaching me tounge twisters, showing me how to properly salute like a marine, banging pots and pans on New Years Eve, and for being the first person to show me how to do chest PT at the age of 7..which is a skill I do everyday now! I love you Pop, may you rest in peace.

Keep up the prayers...

Love, Rachael xx

been too long!

Hi everyone!

Sorry it's been so long since I've updated. Not much new on the health front..but I can say that lately I have felt better than I have all year! It's crazy, and it feels good. It makes me want to take this time and do everything possible! Go out, dance, have fun with my friends....because so soon the call is going to come and completely change my life. I will have to start from scratch...and fight all over again. I am definitely very very scared. I have even been having dreams of getting the call and being so worried. I know it's whats best for me though..and whats meant to be.

Even though I'm feeling pretty good as far as health wise, it's been tough cause my grandfather is very very ill and now in hospice care. It is extremely hard for me to watch him wither away to nothing. I have never really watched someone die before..and it is probably one of the hardest things I've ever had to do. I have a hard time coping..and find myself avoiding going to see him because it completely consumes me and breaks my heart into pieces. I am a nurse, I help people...but this I cannot fix and it drives me crazy. My poor mother and grandmother are doing so much for him and are truly amazing people for being so strong through this. Much stronger than I.

I don't know how hospice/geriatric nurses do it...to care for someone that was once so full of life that now has lost all control, all dignity and is just ready to tell the world goodbye. It eats me up inside... I take care of kids...and thats all I really know. Even the very sick ones still have that resiliency in their eyes and most still manage to play and keep trying. The kids I care for amaze me.

I have recently taken care of the cutest most sweet 3 year old patient. He has had some trouble with his kidneys completely out of nowhere and has had a very rough go in the hospital. But this special little man still manages to giggle, smile and say "thank you." It's so hard when, like me, these health problems come completely out of nowhere and you have to figure out how to deal. Do you crawl in a ball and hide? Or do you just roll with the punches and understand this was brought on for a reason..and God doesn't give you more than you can handle? You take the problem head on and play with the cards you have been delt. This boys mother has been his rock and such a good influence through all of this. Pushing him hard to play, eat and get his strength back. It is so refreshing to me to see families like this. It's who you have by your side when the going gets tough is who really matters.

Anyway..please keep my family in your prayers. We are strong though, and seem to makes it through anything. I am very lucky.

Have a good weekend!

xx-Rachael