Sorry!

Hey Everyone!

I can't believe how far behind I got in my blog updates! Yikes....

So where do I begin?

So first, I made it to my one year Liversary November 22! I think I can officially say that this liver officially belongs to me! It's definitely been a trying year since the big day...but I am happy and healthy and at the end of the day, that is really ALL that matters to me. I really do believe if you have your health, you have EVERYTHING. Think about it...if you are sick all the time..are you really living? If you feel awful every day of your life...are you living? I don't think so.

I can remember my surgery like it was yesterday. I remember the weird, little details like what color my room was and the way it felt the first time I swallowed food how it felt like my esophagus was in a totally knew position. I remember counting each and every staple in my stomach multiple times when I was bored. I remember the taste of the saline when they would flush my IVs. I remember how food didn't taste the same. It was such a surreal experience. I remember the new energy, the feeling of a working organ which I am now so thankful for.

The ups and downs were apart of the package...the deal that I signed up for...and I know where I do believe the transplant added years to my life, I know that with it, I have a new set of battles. My stomach and my ulcerative colitis still have been giving me some issues but nothing worrisome.

I have made so many new friends in the transplant community which is so great. Some of them are waiting for organs, some just got theirs, and some have been tranplanted for years. Each person that I have met has taught me so much...not just about transplants and surgery but about life and the appreciation for it. I think having this new group of friends is so beneficial...we really do and can help each other in ways NO ONE else can. I'm really hoping my dear friend, Karen, gets her liver soon. She is very special to me! Also, my dear friend, Marty...he has his transplant the same week as I did and he lived without a liver for 3 DAYS! Isn't that nuts? Now he is running circles around most people his age. Him and I will be tag teaming a lot I think through volunteering. We were recently called the "Dream Team."

Christmas break for me was awesome. I had a great time with my entire family. It was so nice to be at home and no stress of work. I really did enjoy it to the fullest.

Happy New Year to everyone...Hope 2011 brings nothing but Love, life and happiness.

xoxo, Rachael

It's cooooooommming!

Monday November 22 is my 1 year anniversary..aka. my LIVERSARY!!

So excited :)

More updates to come!

quickie

Hey all!

Liver is still kicking butt...however the rest of me kinda stinks! Being immunocompromised is not easy :( Back in the hospital for a few days with gastroenteritis that made me REALLY sick! High fevers and a lot of nausea/vomitting/diarrhea..which then lead to dehydration. Back to work now and feeling much better.

Transplant cleared me..so now I'll be following up with my hepatologist, Dr. Jamie Hamilton (he's friggin' amazing) and getting a new GI doctor for my Ulcerative Colitis..and her name is Christina Ha. Hope she is nice!

Only a few more weeks til I made it to 1 YEAR!!!! Crazy!! And the best part is I am going to celebrate by getting out of Baltimore for a few...but IDK where yet! I also have off for Thanksgiving and Xmas this year! So excited! This year for Thanksgiving I am gonna eat my butt off...cause last year I was just a few days post-op and missed out on all the family yummy grub!

Hope all is well...

XX, Rach

PS. I got the official letter that my donor's family recieved MY letter! :)

What a summer...

Why hello everyone!

Happy fall to all! It's finally here and I can honestly say..I am very happy it is! Boy what a summer it's been...besides being back in the hospital for CMV, 2 wks ago I was back in the hospital for blood in my intestines. As most of you know, I do have ulcerative colitis...so this isn't completely abnormal for me. Because of how sick I was with my CMV, I did have to be re-admitted for just a few days to check on things and be extra careful. It just ended up being a small colitis flare..which they treated with some steroids and I had a colonoscopy. I was quickly sent home and got back to work! The docs think I had a flare from taking a lot of ibuprofen (which is known to cause flares) for my back pain (which I still, unfortunately, have).
So looks like I will be trying to lay off of it as much as I can, but it is very hard when I am at work leaning over beds, picking children up and moving them etc. I am going back to acupuncture now to help with this. I plan on going pretty regularly to stay consistent with it so it is the most effective as it possibly can be. I love my acupuncturist too...going to see her is not just for treatment, it's almost like therapy. She is an amazing person and so easy to talk to.

The back pain has been going on for such a long time now. I am hoping to maybe get an MRI to check things out a little closer. I have tried EVERYTHING...Physical therapy, yoga, acupuncture...I'm at the end of my rope with this. I have a pretty high tolerance for pain, but this is just unbearable to function with.

I have recently been getting more involved with The Living Legacy foundation of Maryland. I plan on becoming an official volunteer after taking an online class. Yesterday, my good friend Clint, who had a liver transplant 16 years ago and is a nurse at Hopkins, asked me to speak at my first function. I spoke at the "Donor Wall Ceremony" which is a ceremony honoring our donors and the families that help to make our new lives possible. It was emotional to say the least. We shared our stories and got to chat with the families. Another recipient was there and he received his gift the same week as I did...it's amazing to see how far we have come. I cannot wait to do more outreach things, it puts the whole experience in perspective and it makes me feel really good.

I finished my letter to my donors family..and I promised that 1. I would do my best to become and advocate for organ donation..and I am so happy I am beginning to fulfill that. AND 2. Since my donor gave me a new life...I would make this one as awesome as possible!!

I also am doing the "Donate Life Family Fun Run" this weekend. I invited all my friends and family to join my team and walk with me. We have raised around 1000$!!!!--All for organ donation awareness!! Thank you to everyone who donated and joined "TEAM CHE CHE"! It means SO much to me...truly.

I want to give a big shot out to my new friends on twitter that I have met...Ricki and Amanda that recently received their transplants! So proud of you guys...

That's all for now...

Lots of love, Rach

lots of updates!

Hey everyone!

I made it to 7 months and now going on 8! I feel bad it's been awhile since I have updated but I actually had a few problems recently and wasn't able to blog.

June 11 I had to go back into the hospital. A week before I ended up going in, I was starting to feel really bad. Just feeling exhausted, tired and nauseous. I found out I had the CMV virus which is common but can be deadly in transplant patients. CMV is a virus that almost everyone has had in their lifetime. Its kinda like chicken pox, you get it once, get over it, but it's always positive in your blood. My donor was positive for it, which is not a big deal. If they didn't transplant the organs that were positive for CMV, we wouldn't have any!

Anyway, I was in the hospital for 2.5 weeks. It was NOT fun, but I got to be under the care of my doctors and nurses that were there through my transplant, so it felt a little more "homie."
They did some tests and had to change up my medicines a few times but I slowly started to get better. I had to get a PICC line put in for long term anti-virals. I give myself Ganciclovir 2x a day. It's going well and I seem to tolerate the medicine pretty good. Stinks that I can't go back to work for awhile though, not until the PICC is out. I miss all my co-workers and patients..and my boss has been so supportive. I am lucky to have such a great, supportive team of nurses to work with and for!

On the bright side, I did finally move into my house in Canton with my 3 roommates, Julie, Alex and Meghan. Our house is so nice and I am loving every minute of city life so far! LuLu is too!

I also attended the Annual Transplant Conference Hopkins holds every year. My mom and I were picked to speak about our experiences and answer questions from soon to be transplant recipients. My mom didn't get to speak much, but I met some cool people and hopefully helped some too. This one couple I met is now especially special to me. She is about to receive her gift and I am looking forward to her feeling how good it feels and helping her along the way. No one else in this world can help more than people that have been through it.

Thank you to everyone for the phone calls, visits to me in the hospital, cards, and everything. Being in the hospital that long was hard and lonely. I couldn't have done it without all of your help. There were nights where I'd cry because I felt alone and scared..and my friends and family were right there. My parents also were my heroes. They busted their butts to be by my side..every single day...sometimes even twice a day. I hope I can be a good parents like that to my kids one day! Thanks Mom and Dad


xo, Rach

1/2 year!

Hi strangers!


Can you BELIEVE it has been 6 whole months, a half of a year since my liver transplant? I MADE IT!

I am happy to report I am doing really well. There has been a few set backs since I last wrote. My bilirubin (yeah, remember that guy?) has been elevated but the rest of my liver test are completely perfect. After a few blood tests they are still not sure exactly why that is. They are rulling out a few things one being hemolysis or something called Gilberts syndrome....but either way, both things are completely benign. My liver function is perfect and there is no signs of rejection. My doctors are very pleased.

My scar has faded a whole lot and when I went to key west, I even sported a bikini. Noone suprisingly asked why it was there but I got a few stares. Oh well, bring it on, it's my battle wound!

On some other notes...

I am moving to Canton in just a few months with my best friends, Meg, Alex and Julie. We have a huge townhouse! I am stoked to move out but of course will miss all the TLC from my parents. Especially mama doing my laundry and making me pancakes and awesome meals!

My dad recently had a small stroke about 2 months ago. He has made an amazing recovery! Pretty much back to his old self, just about 20lbs lighter! He has done great with going with the doctors reccommdations and had really taken charge with his health. I am so happy, and so very proud of him!


Love ya daddy!

So happy it's summer and warm out! Looking forward to lots of vacations this summer! I remember this time last year starting this blog and talking about my upcoming vacations. Its crazy how things change in just 12 short months. Good changes..and healthy changes. I couldn't be more blessed to be happy and healthy.

And that is my hope for you all too!

xx, Rachael

been awhile..

Hey Everyone! Been awhile right? I haven't updated as much because there really isn't a whole lot to update you on. I did, however, make it to 4 months post transplant without any major complications (knocking on wood). I am a lucky girl it seems :)

I have been back to work for over a month now working 30 hours/week. It's definately not easy, but I would say it's a lot easier than before my surgery. It's gonna take time to build my stamina up and I know that, it just gets frustrating sometimes. And I really have a hard time with nights now. It's crazy that I used to work only nights before. My body just is SO done with it. I also realize how much I miss my friends when I work a stretch of nights, it just plain stinks.


I am going to Key West, FL tomorrow to have another post surgery relaxing vacay! So excited to get away from the rain and cold. Watch as soon as I leave, the weather here in Bmore will be absolutely gorgeous..haha.

Donate life week is in two weeks..everyone sign up to be a donor here www.donatelifeamerica.net! I have been talking to volunteer coordinators and am beginning the advocacy program very soon. I am so excited.

I can't believe it's almost Easter, seems like I had my surgery yesterday and it was Xmas! Hope everyone has a happy one and the Easter Bunny brings you lots of yummy treats!


xx, Rachael