1 month post-op, stapleless, Kyle in from Cali, and it's Christmas!!!

It is Christmas Eve!!! Hope everyone is getting their last minute shopping and errands done..so tonite and tomorrow you can relax and enjoy the holiday!! I know I will!!

So many things to update. First, Dec 22 was my one month anniversary of me and my new liver! I continue to do absolutely great! I went to see my surgeons yesterday in clinic and not only are some of my medicines slowly getting weaned (I take about 2o-30 a day) my blood tests and liver function is absolutely PERFECT! How great is that? I even got all 56 staples removed from my incision and the sutures where the drains were. It didn't even hurt, at all! And now I can definitely move around a bit easier! I even went out with my girlfriends this week and got back to joining the real world...now I am just anxiously awaiting Kyle's arrival from California..her flight should be here any minute!!

This Christmas is exceptionally special for me...not only did I recieve the best gift, the gift of health and life with my transplant, but I have met and come in contact with some truly amazing people. This experience has taught me so much about life...and how precious it is. It has taught me about faith. Taught me about trust and taught me about what you do for the people you love. I have learned there are so many good people in this world. I am just thanking God everyday...and remembering EVERYday to count my blessings because I am so lucky. I feel like I have it all these days...family, amazing friends and support, energy and a new found zest to make great things happen in my life and to do everything I always wanted to do without reservation.


Please take a minute to count your blessings this Christmas and remember what the season is truly all about (whether you are religious or not)...and if you are not already, please become an organ donor. It takes just a few minutes to sign up and it would be the best thing you could give me.Some states you sign up when you get your licence, but even if you are not sure if you are one or not, check there first, then go to this website www.donatelifeamerican.net.
The website also will answer any questions you may have about becoming a donor and how it works.


I hope everyone has the Merriest of Christmases...and the Happiest of Holidays...

Rachaelxx


PS. Here is a picture of me and my main transplant surgeon, Dr. Andrew Singer. Him along with Dr. Hamilton and Dr. Cameron helped to save my life. This was taken Dec 23 at my 1 month post-op visit.

Not staple-less ....yet

Hi everyone!

Quick update that my clinic appointment went great this past week! All of my liver function tests and other blood work look awesome!! My staples and sutures, however, are going to have to stay in another week....but that's ok, they kind of are like my security blanket! I don't want anything falling out, yuck!

It actually is funny, my surgeon, Dr. Cameron, the fellow, Dr. Daggar and the nurse practitioner, Maura all were in the hallway of the clinic about to come into my room...and they all look in my direction...smile from ear to ear and laugh! The say...ok..who is the patient? where is the one that had the liver transplant 3 weeks ago!?

7 more days til XMAS!! I can't wait to have fun with my neice this year and get to see her open all her toys!! She said to me... "Che Che (pronounced Chi Chi..she calls me that) did it hurt when you got your new liBer?" She has a hard time with her "Rs." How cuuute is that? And she wasn't even scared of my incision when I showed her.


Hope everyone is almost done all of their shopping! Remember not to get to stressed out and remember what the holidays are really all about..and all that we have to be thankful for.

xx, R

3 weeks+1day

Another week has flown by and I continue to do well! Still sore...but I actually feel better the more active I am. The more I sit around, I get so stiff! I still have my staples and sutures in, hoping they will come out at my clinic appointment on Wednesday....but I want the doctors to be sure they are 100% percent ready to come out first! Eeeek, I am scared!

Getting a lot of rest, getting my labs taken twice a week, seeing the surgeons once a week and slowly getting back to being active is what I've been up to! Getting kind of bored sometimes but preparing for Christmas is helping with that! A little more than a week to go before the big day!!

Kyle, one of my bestest friends that moved to California in August will be home for the holidays and I am sooooooooooo excited to see her. I can't wait to get all of our girls together and catch up, it has truly been SO long.

This holiday I truly feel so blessed...I feel like I got the BEST present ever. What more can I ask for? This is the first Xmas in 3 years where I wont be working..and even though I miss working and my coworkers and patients, I am really looking forward to the time with my family and friends. Time that wont be rushed finally, and I can really soak in all of the holiday spirit and happiness.

Speaking of happy...I am so happy these days..I feel like everyday is a great day and I am sitting on top of the world :)

Hope everyone is as equally well...
Love, R

2 weeks plus 2 days Post-op!

Had a really nice weekend! The party was fun and low key and it was GREAT to catch up with my family! I cannot believe it's been 2 weeks already since my surgery! I am healing well and becoming less sore everyday. Again, the only discomfort I really have is when I lay down at night and when I wake up in the morning. Once I get moving, I am golden :)

Reallyyyyy disapointing loss by my Ravens last night. Kinda put me in a bummer mood..but of course I have no time for that! We have 4 games left!

I am looking forward to helping with holiday decorating this week, spending time with some friends and doing some holiday shopping. I feeling so good everyday I am already itching to get back to the gym and start dancing...but I know I have to put the breaks on for now!

Hope everyone has a great start to their week!

<3 R

Nice little Saturday

Beautiful snow here today :) I spent today relaxing and recovering, and it was a nice day to do so!
Since I kinda missed Thanksgiving, I am really looking forward to tomorrow. Every year...since way before my time, my parents have been throwing what we call the "Tree Party." Basically we get a bunch of people here, head to Carroll County..and chop down a bunch of fresh trees...come back to the house and eat, drink and be merry (football too of course)!

Unfortunately, since the surgery, and late notice and everything else going on, it will be cut short of some really special people, but I will get to at least spend the day with my family whom I miss like CRAZY! I even helped make some yummy treats :) Kinda stinks I can go trekking on the hills of the Xmas tree farm but I will be back at the house waiting for everyone to get the party started.

I am healing and getting stronger everyday. God is good!

<3, R

Home sweet home!

Very short post tonite because I am completely beat but I AM HOME!!!!!!!!!!!!!!! My surgeons couldn't be more happy and neither could I. I am getting follow up labs tomorrow morning just to keep a close eye on me :) So I'll be on the move!

Hoping to get a very restful night in my OWN bed! Love you all lots!

xo, R

Normal!!

Hey guys! Just another quick update...my bilirubin was 1.2 today! Which is just about perfect! The plan is for discharge tomorrow, probably wont be home until tomorrow evening after everything gets done!

What a journey this has been, but what an amazing one. If you saw me, you could see how much I am glowing from ear to ear. I am so happy with so many things. Not only about this surgery, my doctors, nurses, care, experience. But I am so happy that I was able to get a organ transplant that truly SAVED my life. I may not have been like the many very sick patients that get transplanted, but I would have been one day. I am very blessed I was able to get early transplantation because of the nodule that they found and the nodule turned out to be NOT CANCER. I am just floating on air, truly. I have a not totally new, but different life now. A life to LIVE, a life where I can finally do all the things I couldn't do before. NOTHING is stopping me now, NOTHING! A new beginning. Making moves people...making big moves...

I am confident that this, again, is what was meant for me and there is a big picture coming clear that I have yet to figure out. I am looking forward to my organ transplant advocacy and hopefully touching/helping/changing some other peoples lives when it comes to organ tissue dononation and transplantation.

Lots of LOVEEEEEEEEE,

R

ps. I thinking about naming my new liver...lol. I need suggesstions so leave comments!

Bili's going down down down down down (singing along to that song "down" on the radio)

Hey guys...just a quick update before I hit the hay for the day. Had another good one here at the Hop! My bilirubin went down from 3.2 yesterday to 2.1 today...so I am just a smidge away from the normal range! No more rejection! Wooooohoo! So Thursday looks like the big discharge day and I could not be more excited. I don't know how many more microwaved cheeseburgers I can take. Haha.

I am feeling great! Doing great! And have the GREATEST people ever in my life....aka. YOU!
Haha, ok that was cheesy!

Have a blessed day everyone! LIFE IS GOOD!

~Rach

The bilirubin Gods are listening

Hey everyone! My bilirubin went down a whole point and a half! So that is great! Our prayers are working so keep them coming! We are in the right direction!!! Still not where they want it to be, so again, a few more days of IV steriods which are on a taper schedule then planning to leave wed-fri. All depending on labs. All of my other vitals, assessments and labs are perfect, so that is always a relief!! My incision looks good too, sore, but good. My back pain is starting to get better now as my pain is more under control and I am becoming more mobil. I also started sleeping flat now to straighten out my upper body so I don't heal all crunched over...and it seems to be working, umcomfy at first, but working! (Thanks, J ;)

Had a pretty chill, relaxing day. Did some online Xmas shopping, getting into Twilight finally (yes, I bit the bullet), took a sweet nap (was up late for that game), gotta nice shower,hung out with my mom, met with my discharge Nurse practionioner and went over all my own knowledge of my meds and new schedule of meds. We also talked about me meeting up with some of the recent, young transplant people that either JUST got transplanted like me, or are very fresh out and are just about my age. We are planning on becoming supporters for eachother...and I believe you cannot have enough mentors and support! My mentors so far have been complete angels to me. I even got a card today from one of my friends on FB who I met through a support group called "People who have had liver transplants"...it came right to my room and was so unexpected and awesome! It is cool to discuss our different experiences. And I think it's so cool the team will hook us up these recent patients with me like that!! So things are progressing...slowly, but surely! Again, visitors welcome, but please try to call/msg/text first because I may be out of the room or meeting with people and I don't want you to come all the way over and it not be a great time for me to see you! I appreciate all of you, even the readers!!

And um...what about that Ravens game last night? Let me just say a few things. 1. A win is a win, I will take it...but really guys? Almost losing to their 3rd string QB? Brutal.
2. That was a great and fun game to watch just wish it wasn't the Ravens I was watching struggle!! Had great company and such a great night here in my little old hospital room! I even had my nurse and tech come in for a few runs to watch it! They loved it. I also screamed really loud around 1130pm and the nurses were like..."Oh no worries, that's just Miss Beecy..." HAHAHAH how funny is that. Some were worried it was another patient falling out of bed or something..but no, just me going absolutely nuts...I almost busted a few staples! haha.
3. Ray Rice=God (i knew the beginning of this year when I bought his jersey he would be amazing just because I owned it..hahaha just kidding)
4. 5 game season boys...LETS GO RAVENS~!!!

Til tomorrow, R

Obstacles? Nahhhh

Sorry I didn't post yesterday, but it was probably one of the rougher ones for me. So my labs have been doing really well until then, yesterday morning my bilirubin which is one blood test that shows the function of your liver shot up a few points. I looked a little jaundice and was completely run down all day until the evening. So since both of my IVs blew (my 5th one in a week) I had to get a new one in my neck (ew!) It's called an external jugular IV, it goes right into that vein. With that IV access, they gave me a dose of high dose steriods because they think the high bilirubin is just my body's normal immune system kicking in saying "hey what is this thing, this isn't ours?" The doctors do not seem concerned, they think I just need a few extra days of TLC with tweaking meds around to get the perfect concoction for me. They gave me another infusion of steriods today and upped my antirejection medicines. I'm hoping this works, but I wont really know until tomorrow morning after they draw more blood. I have more stitches, staples, bruises, red marks all over me, you wouldn't believe! Haha.

I was a little scared about this at first just because I was doing EXCEPTIONALLY well at first..but my surgeron reassured me. He told me not to be worried, this is all part of every process. Especially with me, someone who is relatively healthy that has a normal working immune system that naturally wants to fight. Most of the the patients he sees are so sick they can't fight it as easy but get a lot of other complicated problems because of that. He also reminded me too...HELLO RACHAEL..you have lupus...did you forget? (my words, not his) Lupus is an autoimmune disease where my body attacks normal healthy tissues and possibly organs. Luckily, I have had no problem with my lupus...but it's still active. So my body, again, naturally, wants to be super charged and fight things.

So it looks like I may be in here for a few more days til I level off, which I'm ok with, I wanna be really ready and confident when I leave here. Dont wanna have to turn around and come right back. No worries!! I'm feeling so much better everyday and getting back to my norm as much as you can do in the hospital. And PLUS....it wouldn't be a Rachael surgery or Rachael anything else for that matter if there weren't any bumps in the road right??.....that's just not my style! Always gotta shake it up! ;)

Lots of Love,
R

making strides...

so updates on my day today...

Well I got rid of my PCA (pain pump) yesterday so it is very nice not being hooked up to a machine. It made it much easier to get up and around today. I actually walked around the unit and did some stairs. It was easier than I thought it would be actually, but I didn't push it too hard. I also was able to shower (yay) and wash my hair which actually made me feel like a real person again.

I am pretty tired though and my energy is pretty short-lived. Along with my appetite. I had a craving for chinese food tonight, but could really barely eat it once it got here. Maybe it's the steriods playing tricks on my mind!!

Pain has been pretty well controlled, I'm not really taking much at all, it's only when I ask for it, which is usually when I get ready for bed so I sleep well. The back pain is still fierce but I think that will take time until im able to move around more easily and not be so rigid in my movements.

This is very emotional at times, I will have to say that. I mean...I just had a freaking liver transplant. Someone gave me their liver and it's now functioning in my body...just so crazy to grasp. I feel guilty sometime too for being a burden on my friends and family...but I know it's not my fault..and I know I need them and they need me just as much. There is no where I'd be flying through this recovery without them.


Hoping to be outta here Sunday or Monday....wanna bust out now but wanna make sure things look as close to perfect as possible before I leave. I will definitely need visitors when I get home too, so if you feel like you wanna do that, let me know and come on over.

I started my organ donation advocacy just a little before this surgery...and now I feel like I want to make it a huge part of my life....so if anyone wants to know more about it, please let me know. I am not sure what I'm gonna do yet...but it's gonna be awesome!! Find something youre passionate about and stay TREMENDOUSLY interested in it!! Thats what I intend to do.

In my last random thought..I just wanna say...kinda out of nowhere...but if you wanna be happy, BE happy. It's really a choice. Fix what is broken, find your own happiness in whatever that may be, never give up on yourself. and never sell yourself short of what you truly are...

like I said, out of nowhere, cliche, but profounding.

Have a good night all,

xx, Rachael

it's me!!

It's me, it's me! I'm back online!!

Here I am folks, did not expect to be feeling up to blogging just yet...but it's Thanksgiving and what better day than today than to come back and thank the world!

I do not even know where to begin. It has been a CRAZY few days. Being one of the 3 people coming out of the OR extubated, to making unbelievable progress where I am apparently the talk of the transplant office. Crazy! This is why I am so glad I was pretty healthy coming into this whole thing, definitely makes it easy I'd guess.

So I have a hugeeee scar on my abdomen, it looks kinda like a mercedes symbol like my dad said but also looks like a huge zipper with all the the staples. Definitely really sore, but as the days go on, it gets easier. All of my other tubes (nasogastric, jackson pratt x3, foley urinary cathetar and my interjugular central line) are all out!! Now I just have 2 IVs left giving me some meds. I have been up out of bed all on my own and walking around pretty well.

My biggest struggle is learning all these new anti-rejection medicines and all their side effects. My tummy is not quite ready for a lot yet, so taking all these meds is extremely difficult..and I'm pretty nauseated all day long. Barfy! Also, from being so stiff and reluctant to move my back pain is killer, the muscles are just worn out!

So as far as Ive been told from my surgeons this morning, all of my labs look good, my body seems to be accepting the liver quite nicely. All of my ultrasounds look great too, so that means im getting great blood flow to the liver.

Looks like a couple more days up here on the transplant floor at hopkins and then home!!! Cannot wait to be in my own bed, and shower!! Dont take those 2 things for granted anymore, trust me!

Again, I just want to thank EVERYONE for all of the unyeilding, constant support....it means the ENTIRE world to me. From my parents and fam, to my best friends n coworkers bringing me goodies, to all the support from my mentors and transplant families out there, all the new people in my life, my nurses (especially katie), my AMAZING surgeons who have changed my life (Dr. Andrew Singer and Dr. Andrew Cameron) to all the people on FB giving me love and showing some thumbs up! Every little bit is pushing me in the right direction for my recovery! Thank u thank u thank u!

Progress

Rachael is making fantastic progress. Today they had her getting out of bed and sitting up for a good while. She also is now on a liquid diet (better than ice chips).
She showed us her "Mercedes emblem" and my wild guess is there is at least 70 staples.
All in all not much to report except how well she is doing.
Till next time,
Rachael's Dad

PS Waiting for Rachael to take back her blog as she is much better than I. Should be soon.

Out of ICU

Rachael was moved out of ICU and is now at the transplant floor, 7th floor Nelson Building JHH.
She continues to make an amazing recovery.
Met with both her surgeons today and they are more than pleased with her operation and recovery.
Her mom is spending the night with her tonight as additional support.
Can't say enough good things about the care my daughter has been receiving as well as family, coworkers and freinds asking about how she is doing and keeping her in their paryers and thoughts.

Rachael's Dad

Hopefully Rachael will be updating her blog very soon

Rachael has asked me to fill in for her while she is recovering from her new liver! That's right she received her new liver this morning.
The surgery went great! She even went to ICU without the respirator as she was doing so well.
They are hoping that she will beat the recovery of one of two people known to go to ICU without the respirator.
All vitals are showing normal.
Will keep all up to date until Rachael is well enough to do this herself.
Should be soon.
Racheal's Dad

aarrgghh....

Waiting, waiting, waiting......

Still just waiting everyone. Really thought I would have had my surgery by now but I guess that "perfect liver" is a little more hard to find. I know I'm at the top of the list...so it's just a matter of finding one that is young, healthy and my blood type. I really hope it's soon before the holidays. Holidays are stressful enough as it is, and I do not want to ruin them for my family and friends.


I had a repeat MRI this past Friday and I wasn't too happy about the results. The nodule that could possibly be cancerous has grown. I'm not sure exactly what all this means, and if this changes anything but I know that the growth is NOT a good thing. :( Kinda scary :(

Anyway, thats about it for now. I truly have been enjoying myself lately, just like I told you all I would. I'm having the time of my life...despite the stress of all this.

I have great people surrounding me.... You all are awesome.

xo, Rach

No go...

Today ended up being a false alarm for my surgery. I knew from the start when I got to the hospital that there was a chance that this liver could potentially go to someone else. There is a sick baby that is also in need of a transplant. In this case..the docs had to go visualize the liver and see if they could take a small portion of it to perfectly fit in this little baby. In this case, I would go home. If they didn't think it would fit in the baby, it was mine. The little one got it this time and I couldn't be happier for his/her family.

I have to be selfless in this situation. #1 because I am already much higher on the list because of my exemption points than I normally would be and that is a blessing. and #2 This baby is sicker than I am....and there is a perfect liver out there with my name on it. Today just wasn't my day. And I'm ok with that.

I kinda feel a little more at ease actually because I have already had the dreaded "call" and I seemed to make it through that ok....and already began the pre-op workup so now I know what to expect and I know that my liver will be coming very soon!

I wanna thank everyone once again for all of your support. It is amazing how many people care...and how people want to help in anyway in crazy times like this. It's great to see people come together.

Gnight all..

R

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

Hmmm do I like this new shift?

Hey everyone! Sorry I haven't updated you all in a while. Vacation was AMAZing! I had a great time in North Carolina with my family. I swear, I have been going to that place for about 15 years now..and it never gets old. Same old scene, but I love it just the same. The most kind, considerate people you will ever meet....southern hospitality to the fullest. No cranky people, no road rage...just relaxed people that appreciate the little things in life and do not sweat the small stuff. I would move there if I could...but I'm not sure I could live that slow life ALLL the time. But I'm definately down for going an extra week next year!!

As far as health stuff goes, we are pretty much status quo. My MELD score will go up on Saturday (eeek) so that's exciting...but also freaks me out a little. Dr Hamilton kinda described my score now as "on the playing field"...but when it goes up to 25 (i'm 22 now) he said it's like "I'm actually in the game." I had a repeat MRI (again....) and it's still the same. The suspicious nodule has not grown! So I'm happy about that. So any day now people...stay tuned!!

Lulu got spayed the other day and did beautifully. People kept telling me..oh she will settle down after she gets that done. Well not our dog...she is crazy as ever! Thank god for that pup, she really keeps me sane through all this craziness!

Only other new stuff is that I'm trying out the 3p-3a shift. Tonite was my first one. Absolutely insane when I got here, but I like the fact I leave at 3a and miss out on my nausea/super tired time I got on night shift around 4-5am.

Keep me in your prayers guys...I really appreciate all your love!

That's all for now...

Loveeeeeeee,
R

4 in a row...go me

Back at work, workin' the night shift. This is my last 12 hour shift and my fourth one in a row! I am so proud of myself that I did it..and I actually don't feel all that bad! (Ask me tomorrow though..)

A month or 2 ago, I could not even attempt 4 in a row..I would be entirely too tired and just feel like absolute POO! I also think since this is my last shift before 10+ days off..that is a little bit of an incentive!

We have 5 nurses tonite and it is so nice to be well staffed. Yes, I have time to do things like this and update my blog, but I don't feel scatter brained and crazy to the point where I feel like I am not giving good care to my patients like I have before when it has been a circus around here. It's defininately much more safe with 5 nurses.

Saturday we leave for North Carolina and it couldn't come at a better time. I am so excited! However, I am really sad to leave Lulu. This is the first time in my life where I have owned a pet and have been completely responsible for something besides myself. Even though she drives me bonkers 80% of the time, I don't think I could love that dog any more. I think I'm borderline obbsessed with her. I'm having separation anxiety already and I don't leave for another 4 days.
Am I crazy? I know she'll be in good hands but not getting her usual mommy/daddy love from us.

I may or may not have internet access down there besides my blackberry so this may be my last blog for awhile. Hope everyone has a great beginning of August..and Happy Birthday to my Meggie and Pop!

Love and <3'S

Rach

Swine Flu??? Crazy!

Since last Friday night, I have had on and off fevers, runny nose and a really bad cough. Sounds fun right? NOT! Because of the swine flu stuff, and working as a health care professional, considering my symptoms, I had to get screened for swine flu and I cannot go back to work until I do not have a fever for 24 hours AND the final read of the swine flu test is negative.

So being off work is eating away at my PTO and that makes me nervous, but I have no choice but to be off work, and I know it is whats best for my patients. I really wanted to save my PTO for the surgery, but I guess I am just going to have to do what I have to do.

Luckily, none of this stuff has anything to do with my crappy liver...well at least as far as I know. However, the past few days my stomach has become really big with fluid (ascites.) It makes it hard to move around and breathe. I now can understand what pregnant women must feel like. I look pregnant too...which would be much more exciting story to explain why my belly is huge!

I'm going to spend the next few days trying to get better and hanging out with my little pup. Hope she doesn't drive me too crazy!

12 days til North Carolina!!!

xo, Rachael

Some awesome days off...

AHHHH....some days off! It is so nice! Laying poolside with my best friends, who could ask for more? This weather has been absolutely amazing and I plan on taking full advantage of it!

Nothing much new to report these days. I have been just working a lot, patiently waiting vacation time. Can you tell how excited I am?

Dr. Hamilton really wants to put me back on some prednisone for my UC, but I am not thrilled about it at all. I'm hoping the acupuncture will start working and I wont need it for very long. I am going to be on it enough after transplant...and the side effects are awful. So we will see how it goes.

Hope everyone is well....

Love and XX,
Rach

Passing some time

At work with a little bit of a break right now. These moments are few and far between so I am going to embrace it!

Past two nights around this place have been nuts. Tonight is a little more quiet, just the way I like it! All my kids are currently sleeping soundly :)

Feeling pretty good these past two nights! And I have access to all my medical records because I work at Hopkins and I checked my MRI results and the nodule has NOT grown. THIS IS super exciting news for me!

I hope everyone has a fun and safe 4th of July. I can't wait to spend the whole day with my family, I miss everybody tons!

Less than a month now til vacation...YAY!

Goodnight all... xx, Rachael

Tests, tests, more tests and some doctors appointments thrown in

Hey everyone. So as we speak I'm at Hopkins awaiting to be called to yet another test. This time, another MRI. I have to get these once every 3 months. They are keeping a close eye on that nodule on my liver to make sure it isn't growing.

If you didn't know, I am very claustrophobic and MRIs freak me out so you can guess I'm thrilled about today! Oh well, better to be safe. My liver docs here do not mess around with me. They are on top of everything.


Yesterday I had to get a colonoscopy (another delightful procedure) and an endoscopy. Dr. Hamilton (my main liver doc) wanted to keep an eye on my ulcer in my stomach as well as those varices I told you about. I got a good report from the tests but boy did I feel like a train wreck afterward. Anesthesia makes me cranky..and not to mention my stomach hurt and I spiked a fever.

Luckily, I'm feeling much better today. No fever! Yay! I feel like I'm being a big cranky pants complaining..but I'm trying not to be. Like I said, just getting antsy ready for this surgery.

Summer is passing me by really quick..the days I'm not working..I'm still at Hopkins doing something!

One thing they can't mess with is my vacations in August. A week plus with nothing but R and R and time w/ my family..and my little Maddie too. It truly can't come soon enough!

Back to work tomorrow! Til next time..

Xx, Rachael

PS: Congrats to my big bro for passing his LEED exam and Happy Birthday to my favorite Aunt Michele!

Intro...

Hi everyone!

So after a lot of back and forth, I decided to start a blog to keep all my friends, family and coworkers up to date with everything that is going on.

As most of you know, I am currently waiting on the Liver Transplant waiting list. If you remember my hospitalization in 2007, I had a GI bleed, which means I was bleeding from my gastro-intestinal tract. It actually was coming from my esophagus from what they call "varices." To make this simple, they basically found out my liver was very damaged. To the point where it was cirrhotic. The blood that circulated in your body and through all you organs could not get through my liver properly because it was so damaged. When that happens, the pressure from the blood had nowhere to go, so the blood vessels in my esophagus, or my varices burst. Causing me to lose a lot of blood. I was in St. Joe's ICU for about 4-5 days.

After I was discharged, the docs at St. Joe sent me to see specialists at Johns Hopkins Hospital (convienetly where I work). There, I began my liver work up and was then diagnosed with Alpha One Anti-tripsin deficiency and Primary Sclerosing Cholangitis. I was put on a lot of meds, but continued to live a pretty normal life once I got back on my feet.

In March of this year, I had another GI bleed. This time it was just an ulcer in my stomach that was bleeding and wouldn't stop. Considering all my health and liver problems, the liver doctors wanted to run more tests. That is when the liver transplant workup began.

Of course I was shocked to hear that I needed this, and scared to say the least. I never thought my liver disease would become that severe that I would need to have this intensive surgery.
I felt absolutely awful this time in the hospital and I think I am still bouncing back from it all.

I met with all of the Liver Transplant team people at Hopkins, which includes soooo many people. Great people may I add! Surgeons, Hepatologists, Nurse practitioners, Social Workers, Financial specialists. I met my soon-to be surgeon Dr. Andrew Cameron. He is so inspiring, and I feel much more at ease about this surgery knowing I'm in his care.

Liver transplants are based on what they call a MELD score. This score determines how high or low you are on the waiting list. Normally, since I am doing OK, my labs show that my score is 11. With this score, I could possibly wait 5+ years. Maybe sooner, maybe later. However, on one of my CT scans they found a suspicious nodule on my liver. The doctors tried to biopsy this nodule, but were unsuccessful. The radiologists could not find a clear picture of it to take a piece for testing. This nodule could be a few things...the worst being liver or bile duct cancer, the better would be a regenerative nodule, which is the liver trying to regenerate itself causing this lump.

Luckily, the doctor's do not THINK this is cancer, but it definitely could be. Because of this, my MELD score gets bumped up to a 22 right now..and after 3 months of 22, I get bumped to a 25...and so on and so on. This means I will have my liver transplant before the end of the year! Which is terrifying...but I am excited too. So one day..I will get a call telling me they have a liver...off to Hopkins I go to prepare for surgery! Crazy huh?
I am soo Ready to go on with my life and start feeling like a normal 25 year old girl again.

As far as how I feel...ehh I have good days and bad days. My high energy spurts are usually short lived. Sometimes getting out of bed, or doing something that is optional is pretty much a struggle. Sometimes, I'd just rather lay in bed all day...but you and I both know I can't just rot away doing that!

I try to keep my life as normal as possible, but sometimes that's hard. Especially with my job that is hard on your body..and swinging shifts as well. My main problems have been back pain and ascites (fluid in the abdomen). I also just get a little down now and then cause I can't do everything I want to do, and what I once did. The thing I miss the most is girls nights out with my friends where I'm on the dance floor! I also really miss going to Body Jam at my gym. That was such a fun release for me...but if I tried to do it, I'd feel awful afterwards.

So I'm trying new things to occupy my time...of course sunbathing when it's sunny (we all know that hasn't been happening too much), acupuncture, and reading. I'll let you know how all of those things are going.

So that is what has been going on with my these past couple months. I am going to try to keep up with this blog as it gets closer to my transplant surgery and do my best as I'm going through the surgery. I am very open to sharing my story..so if anyone has any questions I'd be happy to answer them.

Thank God for modern medicine, my friends and family that have been amazing...and of course my boyfriend, Rob. Love you guys! And R.I.P Michael Jackson (I heard once before he had Alpha One as well)


Till the next post....

xx, Rach