well i have ANOTHER dr. appointment in the morning, at vanderbilt.
lets just hope i dont oversleep again.. im setting lots of alarm clocks tonight. seven should be enough, ya think?
3 on mine, 3 on allens, and the one in our room.
Monday, January 31, 2011
Friday, January 21, 2011
**blood work**
I have been having to go to Vanderbilt at least once a week to every other week, just for blood work. So I finally got it arranged to where I can go to my Dr. in Manchester once a week and have them do the blood work and fax it back to Nashville. (huge gas saver!)
Well I went yesterday to Manchester for labs to be done, after a few tries, they finally got some blood!... any who.... they called me today to tell me that they, called Vanderbilt today to let them know that my Whit Blood Cell Count had dropped. A normal range for a healthy person is any where from 10,00 to 15,000....
well last week mine was at 2,000, and this yesterday it was 1,400. They told me to call Vanderbilt fist thing Monday morning. So i may possibly be looking at another transfusion, depending on what my platelet count is.
I wish just for a few days, I could feel like a normal healthy person, and not have to be stuck with needles, or have to talk to Dr's. on a phone, or see them for that matter.
Its really starting to get old!
Well I went yesterday to Manchester for labs to be done, after a few tries, they finally got some blood!... any who.... they called me today to tell me that they, called Vanderbilt today to let them know that my Whit Blood Cell Count had dropped. A normal range for a healthy person is any where from 10,00 to 15,000....
well last week mine was at 2,000, and this yesterday it was 1,400. They told me to call Vanderbilt fist thing Monday morning. So i may possibly be looking at another transfusion, depending on what my platelet count is.
I wish just for a few days, I could feel like a normal healthy person, and not have to be stuck with needles, or have to talk to Dr's. on a phone, or see them for that matter.
Its really starting to get old!
Thursday, January 20, 2011
new meds!
Let me just tell ya... I have NEVER had a nose bleed before...
Until Tuesday.
I woke up Tuesday morning, and came down stairs. from the second my feet hit the bottom of the stairs... it happened... my nose started bleeding... not just a little bit, but GUSHING EVERY WHERE!
Thank goodness I have hardwood floors, because there was a trail of blood all the way to the bathroom. All I could do was stand over the toilet, and FREAK OUT! l.o.l.
from the time I got a wash cloth and walked into the kitchen, it was completely saturated...filling up in my nose, and coming out of my mouth!
I tried everything to get it to stop. pressure, ice, etc...
needless to say, my nose bled for 45 minutes.
Corbin kept saying "EWW... mama you got boo-boo!"
well, it happened AGAIN, this morning. So I sent an E-mail to Dr. Perri at Vanderbilt, and they put me on, yet, another medicine "mephyton". It could be 1 of 3 things.
1. i am having problems clotting blood.
OR
2. Its the predisone they put me back on.
OR
3. BOTH.
OH YEAH... Corbin's surgery went great yesterday. all except, he was very ill when he came around from anesthesia.
Until Tuesday.
I woke up Tuesday morning, and came down stairs. from the second my feet hit the bottom of the stairs... it happened... my nose started bleeding... not just a little bit, but GUSHING EVERY WHERE!
Thank goodness I have hardwood floors, because there was a trail of blood all the way to the bathroom. All I could do was stand over the toilet, and FREAK OUT! l.o.l.
from the time I got a wash cloth and walked into the kitchen, it was completely saturated...filling up in my nose, and coming out of my mouth!
I tried everything to get it to stop. pressure, ice, etc...
needless to say, my nose bled for 45 minutes.
Corbin kept saying "EWW... mama you got boo-boo!"
well, it happened AGAIN, this morning. So I sent an E-mail to Dr. Perri at Vanderbilt, and they put me on, yet, another medicine "mephyton". It could be 1 of 3 things.
1. i am having problems clotting blood.
OR
2. Its the predisone they put me back on.
OR
3. BOTH.
OH YEAH... Corbin's surgery went great yesterday. all except, he was very ill when he came around from anesthesia.
Tuesday, January 18, 2011
OVERSLEPT!
As much as I would love to tell you how my Dr. appointment with Dr. Perri went, I cant....
because...
I OVERSLEPT!... Can you believe that. I never oversleep...So I had to reschedule my appointment, for Feb. 22 at 9:00.
I guess I was just too tired to wake up this morning. We have had a very busy week with all of our Dr's. appointments. Corbin had an appointment yesterday for a physical to make sure he was healthy enough for surgery in the morning. I had my appointment that I missed this morning. We have to take Corbin to Smyrna in the morning at 7:30 to have dental restoration done. He has to have it done under general anesthesia at the surgery center, because he is too small and doesn't weigh enough to have it done in the dentist office.
So pray for a safe surgery for my little boy in the morning. pray that everything goes well. Ill let you know how he does tomorrow. If I don't OVERSLEEP again! (sarcasm)
because...
I OVERSLEPT!... Can you believe that. I never oversleep...So I had to reschedule my appointment, for Feb. 22 at 9:00.
I guess I was just too tired to wake up this morning. We have had a very busy week with all of our Dr's. appointments. Corbin had an appointment yesterday for a physical to make sure he was healthy enough for surgery in the morning. I had my appointment that I missed this morning. We have to take Corbin to Smyrna in the morning at 7:30 to have dental restoration done. He has to have it done under general anesthesia at the surgery center, because he is too small and doesn't weigh enough to have it done in the dentist office.
So pray for a safe surgery for my little boy in the morning. pray that everything goes well. Ill let you know how he does tomorrow. If I don't OVERSLEEP again! (sarcasm)
Monday, January 17, 2011
Dr. appointment in the morning
I have a Dr. appointment at 8:30 in the morning at Vanderbilt. lets just hope all goes well...
Ill update you sometime tomorrow about the appointment..
Ill update you sometime tomorrow about the appointment..
Sunday, January 16, 2011
medicine reminder
So, Ive been having trouble with remembering to take my medicine for my liver disease. Its also playing a part in me being inactive on the transplant list. If I don't take my meds now, then what makes them think that I'm going to take the meds after transplant?
Well....
I have found the best way to remind myself to take my meds. There is a website I just found. mymedschedule.com Its free and easy. All I had to do was list all my meds and time of day to take them, and it makes a schedule, and when its time for me to take my meds, I receive a text message on my cell phone! I'm hoping this will help me to take my meds. it also lets me put in the RX number and pharmacy phone number, and when its time to refill my meds, it automatically does it for me. all I have to do is go and pick up the medicine at the pharmacy.
...life couldn't be more easier, right?
Well....
I have found the best way to remind myself to take my meds. There is a website I just found. mymedschedule.com Its free and easy. All I had to do was list all my meds and time of day to take them, and it makes a schedule, and when its time for me to take my meds, I receive a text message on my cell phone! I'm hoping this will help me to take my meds. it also lets me put in the RX number and pharmacy phone number, and when its time to refill my meds, it automatically does it for me. all I have to do is go and pick up the medicine at the pharmacy.
...life couldn't be more easier, right?
Saturday, January 15, 2011
March 10, 2005 forever changed my life
Now, where were we?...
When we got thru talking to Dr. Daniels, we made our way over to the hospital, and sure enough there was an ambulance waiting on me. My mom, brother, and sister in-law was with us. The EMT told my mom that she could follow behind the ambulance, but if he turned on lights and sirens, not to be alarmed, it just meant that he was going to be going faster to get through all the traffic on the interstate, and she wouldn't be able to stay behind them if lights and sirens were on. The paramedic noticed I was a little bit scared so, he let me talk on his cell phone to my mom all the way there.
When we finally got to Vanderbilt, we sat in the emergency room for about six hours, waiting on a bed upstairs to become available. While we waited for the bed, we met SO MANY Dr's. and nurses, and specialists. We met Dr's. Gillis, Branner and Jones like I told you about in my previous post. I even had one Dr, come in and test my eyes to see if I had Wilson's disease. He numbed my eyes, dilated them, and even took some kind of pointy object and poked my eyeball... literally... and I didn't even feel it. At this point, I finally got a room upstairs in the PICU (pediatric intensive care unit) my mom was the only one allowed to stay with me in the room, which meant my brother and sister in-law had slept in the car that night because the waiting rooms were so full. I keep referring to "mom, brother, and sister in-law" my mom is Becky, my brother is Jim, and his wife is Jennifer (just to let ya know) :)
A few days later I was taken down to the operating room to have a biopsy done of my liver. They gave me a light sedation for it, but I felt every bit of it, and it hurt like the dickens! when I came out of the OR I had a ton of visitors. I woke up and to my surprise I saw my mom, my aunt and uncle, my four little cousins, Jim, Jennifer and Shad. my uncle had went to Verizon and had an extra line added to his cell phone bill just so I could talk to them and my friends.(one of the best gifts I got while I was there!).
The next day, march 10, 2005, my mom came into the room with the team of Dr's.,crying. The Dr's. sat down on the bed beside me and told me that I was the sickest kid in the hospital and the region. that I needed a liver transplant. With all my blood work that had been done, I should be in a coma, and not ever wake up. If I would have waited another day or two, I would not be alive. My mom looked at me and said "Erin, do you understand what they are saying? "how come your not upset? The first words that came out of my mouth was, "I'm not scared, because I know God is going to take care of me!" and that's just what God did, he took care of me and is still taking care of me, to where I'm able to sit here and tell you all about my testimony!
To shorten up this story I was in Vanderbilt for 7 weeks. I had two liver donors, but when the livers came in and were tested, they turned out not to be suitable enough for transplantation. 6 weeks after hospitalization I finally got the name of my liver disease. I have Autoimmune Hepatitis AND Primary Biliary Cirrhosis. or AIH/PBC OVERLAP SYNDROME.
From 2005, until just last week I have been hospitalized probably 30-40 times. I am still currently on the transplant list as inactive because my disease is under control as of right now. I told you God is taking EXCELLENT care of me. I couldn't ask for a better Dr.
Here are a few photos that I found while I was in the hospital.
When we got thru talking to Dr. Daniels, we made our way over to the hospital, and sure enough there was an ambulance waiting on me. My mom, brother, and sister in-law was with us. The EMT told my mom that she could follow behind the ambulance, but if he turned on lights and sirens, not to be alarmed, it just meant that he was going to be going faster to get through all the traffic on the interstate, and she wouldn't be able to stay behind them if lights and sirens were on. The paramedic noticed I was a little bit scared so, he let me talk on his cell phone to my mom all the way there.
When we finally got to Vanderbilt, we sat in the emergency room for about six hours, waiting on a bed upstairs to become available. While we waited for the bed, we met SO MANY Dr's. and nurses, and specialists. We met Dr's. Gillis, Branner and Jones like I told you about in my previous post. I even had one Dr, come in and test my eyes to see if I had Wilson's disease. He numbed my eyes, dilated them, and even took some kind of pointy object and poked my eyeball... literally... and I didn't even feel it. At this point, I finally got a room upstairs in the PICU (pediatric intensive care unit) my mom was the only one allowed to stay with me in the room, which meant my brother and sister in-law had slept in the car that night because the waiting rooms were so full. I keep referring to "mom, brother, and sister in-law" my mom is Becky, my brother is Jim, and his wife is Jennifer (just to let ya know) :)
A few days later I was taken down to the operating room to have a biopsy done of my liver. They gave me a light sedation for it, but I felt every bit of it, and it hurt like the dickens! when I came out of the OR I had a ton of visitors. I woke up and to my surprise I saw my mom, my aunt and uncle, my four little cousins, Jim, Jennifer and Shad. my uncle had went to Verizon and had an extra line added to his cell phone bill just so I could talk to them and my friends.(one of the best gifts I got while I was there!).
The next day, march 10, 2005, my mom came into the room with the team of Dr's.,crying. The Dr's. sat down on the bed beside me and told me that I was the sickest kid in the hospital and the region. that I needed a liver transplant. With all my blood work that had been done, I should be in a coma, and not ever wake up. If I would have waited another day or two, I would not be alive. My mom looked at me and said "Erin, do you understand what they are saying? "how come your not upset? The first words that came out of my mouth was, "I'm not scared, because I know God is going to take care of me!" and that's just what God did, he took care of me and is still taking care of me, to where I'm able to sit here and tell you all about my testimony!
To shorten up this story I was in Vanderbilt for 7 weeks. I had two liver donors, but when the livers came in and were tested, they turned out not to be suitable enough for transplantation. 6 weeks after hospitalization I finally got the name of my liver disease. I have Autoimmune Hepatitis AND Primary Biliary Cirrhosis. or AIH/PBC OVERLAP SYNDROME.
From 2005, until just last week I have been hospitalized probably 30-40 times. I am still currently on the transplant list as inactive because my disease is under control as of right now. I told you God is taking EXCELLENT care of me. I couldn't ask for a better Dr.
Here are a few photos that I found while I was in the hospital.
 |
I believe Shad was putting make up on me to get me "dolled up" for the gorgeous Dr. Jones :)
 |
| I got to get to know Mary a lot better. I adore this sweet Godly lady. |
 |
| I met alot of wonderful people through-out my journey. |
Reliving that day!
I'm starting a blog on living with liver disease.
so bare with me, because I'm going to take you back in time, to let you know the gist of things...
it all started in 2005. i remember it like it was yesterday. i was a junior in high school, on a youth church trip to Nashville at "acquire the fire". skillet was in concert that night, and i started feeling really sick, like, going to the bathroom every five minutes to throw up. i stayed sick the whole weekend, and on throughout the weeks. i went to church one Wednesday night, and i got tired of people asking me "why are you yellow?"..it made no sense to me what in the world they were talking about.
after church that night, i went to the youth pastor, Shad and asked him if my eyes were yellow. the reason i asked is because his wife is a nurse. so i went and asked her. she told me to have my mom take me to the Dr. or the ER. at this point i was scheduled to be in court for truancy, because i was sleeping so much that i would miss 3-4 days a week of school. i told my mom that i had a lot of my friends at school keep telling me that i was "yellow" and that Shad's wife Mary told me to go to the Dr.
so my mom took off work at lunch and took me to the hospital. luckily Mary was working that day and stayed in the room with me and my mom. to help us understand all the medical terms of what was going on.
the diagnosis i got was far from what i ever wanted to hear. the Emergency room Dr. told me that i was pregnant and had hepatitis C. and BOY WAS HE WRONG!.. considering i was 17, never had sex. how could i be pregnant? so we made an appointment with our family Dr. and went to see him. he did a numerous amount of tests, went back a few days later for the results on the blood work. and that's when it went down hill from there. we found out what liver enzymes and bilirubin and hepatitis really is.
the Dr. said in his 35 years of practice, he had never seen someone with such high liver enzymes and bilirubin.
bilirubin is what makes you jaundice, its the blood work that shows how well your bile ducts in the liver are working. its supposed to be at or below a "1". mine was "42". i was extremely yellow, but my family couldn't tell because they were so used to seeing my all the time. the hepatitis A,B,C, and D blood work all came back negative. while the office was closed for lunch, we went to get a bite to eat, and have an ultrasound done at the local hospital, by that time the Dr. office called my mom and told us to come back to the office. that they were still closed for lunch, but Dr. Daniels wanted to talk to us, so they would open up the door for us.
when we got there we sat in the waiting room for the Dr. he came out and sat and talked with me and my mom. he told us that there is an ambulance waiting for us at the hospital for, we needed to get over there and meet them, that he was sending me to Vanderbilt children's hospital, to be seen by three Dr's. (Gillis, Branner and Jones). that he didn't know what was wrong with me besides i was critically ill. and he assured my mom that they would take good care of me.
that's enough for this blog. ill fill you in on what they did at Vanderbilt tomorrow.
so bare with me, because I'm going to take you back in time, to let you know the gist of things...
it all started in 2005. i remember it like it was yesterday. i was a junior in high school, on a youth church trip to Nashville at "acquire the fire". skillet was in concert that night, and i started feeling really sick, like, going to the bathroom every five minutes to throw up. i stayed sick the whole weekend, and on throughout the weeks. i went to church one Wednesday night, and i got tired of people asking me "why are you yellow?"..it made no sense to me what in the world they were talking about.
after church that night, i went to the youth pastor, Shad and asked him if my eyes were yellow. the reason i asked is because his wife is a nurse. so i went and asked her. she told me to have my mom take me to the Dr. or the ER. at this point i was scheduled to be in court for truancy, because i was sleeping so much that i would miss 3-4 days a week of school. i told my mom that i had a lot of my friends at school keep telling me that i was "yellow" and that Shad's wife Mary told me to go to the Dr.
so my mom took off work at lunch and took me to the hospital. luckily Mary was working that day and stayed in the room with me and my mom. to help us understand all the medical terms of what was going on.
the diagnosis i got was far from what i ever wanted to hear. the Emergency room Dr. told me that i was pregnant and had hepatitis C. and BOY WAS HE WRONG!.. considering i was 17, never had sex. how could i be pregnant? so we made an appointment with our family Dr. and went to see him. he did a numerous amount of tests, went back a few days later for the results on the blood work. and that's when it went down hill from there. we found out what liver enzymes and bilirubin and hepatitis really is.
the Dr. said in his 35 years of practice, he had never seen someone with such high liver enzymes and bilirubin.
bilirubin is what makes you jaundice, its the blood work that shows how well your bile ducts in the liver are working. its supposed to be at or below a "1". mine was "42". i was extremely yellow, but my family couldn't tell because they were so used to seeing my all the time. the hepatitis A,B,C, and D blood work all came back negative. while the office was closed for lunch, we went to get a bite to eat, and have an ultrasound done at the local hospital, by that time the Dr. office called my mom and told us to come back to the office. that they were still closed for lunch, but Dr. Daniels wanted to talk to us, so they would open up the door for us.
when we got there we sat in the waiting room for the Dr. he came out and sat and talked with me and my mom. he told us that there is an ambulance waiting for us at the hospital for, we needed to get over there and meet them, that he was sending me to Vanderbilt children's hospital, to be seen by three Dr's. (Gillis, Branner and Jones). that he didn't know what was wrong with me besides i was critically ill. and he assured my mom that they would take good care of me.
that's enough for this blog. ill fill you in on what they did at Vanderbilt tomorrow.
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