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
Monday, November 30, 2009
Sunday, November 29, 2009
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
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
Friday, November 27, 2009
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
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
Thursday, November 26, 2009
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!
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!
Tuesday, November 24, 2009
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.
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.
Monday, November 23, 2009
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
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
Sunday, November 22, 2009
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
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
Tuesday, November 17, 2009
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
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
Friday, November 6, 2009
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
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
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
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