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
Thursday, August 20, 2009
Wednesday, July 29, 2009
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
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
Monday, July 20, 2009
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
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
Tuesday, July 14, 2009
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
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
Thursday, July 2, 2009
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
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
Tuesday, June 30, 2009
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!
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!
Friday, June 26, 2009
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
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
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