Tomorrow is Sunday (also my favorite day of the week because I spend a lazy day drinking coffee and reading the local and state newspapers in my pajamas) and it's the beginning of a new month. Time is passing to quickly for my liking.
A winter ice storm blanketed northern Arkansas and created massive power outages. I feel with a degree of certainty that Deb, the other "half" of this blog has been affected.
Today, I feel a bit cranky for no valid reason, other than I'm cranky. It seems that I get nothing accomplished even with my best efforts. The thought of being able to hire a "life" organizer along the lines of a closet organizer sounds appealing. Is that what they call a life coach?
Items of frustration for today:
*Feeling neglected by my transplant team because I've had no questions answered regarding my "rejection" other than a call to increase my medication.
*My mind is blank on ways to fundraise for the Liver Life Walk scheduled for April 4, 2009 (feel free to click on the link to the right of this post and help relieve this frustration with a donation).
*How can I spend HOURS on the computer for entertainment?
*I want to write a second letter to my donor family but am not sure if I should. This is probably my greatest frustration at this time. I really desire some contact if only to be given a letter about my donor.
*I'm ready to start treating this dragon, hepatitis C, and I'm pretty sure it will take a "fight" with my GI doctor to get him to even consider writing the prescripton to get started.
*My cat just puked a big hairball that I now have to clean up!!!!!! Very Frustrating.
So, I will close and work on inner peace and cleaning the carpet.
Keep your spirits high...robin
Saturday, January 31, 2009
Thursday, January 29, 2009
Another biopsy---by robin
Today I got another biopsy, this time my mouth. Interestingly enough, the oral surgeon said he felt it was caused by...TA--DA...viral activity and then some kind of acute "stressor". So, I'm sitting here with a big wad of gauze in my mouth and I say to myself, "I have a pretty good idea where the viral activity came from but what is the stressor"? Boy, was that an open question so here are a few ideas.
Viral activity---thank you Hepatitis C
Stressor---initially I laughed and then smiled at my sweet hubby who drove me to the oral surgeon and said, "We know that one...it's got to be YOU". I'll not write his response but it was in good humor and spirit.
So, back to stressor...here is my personal list:
New crown placed at the exact site of the lump---9 months ago.
Liver Transplant---15 months ago.
Rejection Episode---discovered a couple weeks ago but probably chronic rather than acute.
My last thought (and this is "MY" idea to which the doctor agreed it could be a possibilty) is the twice daily dose of GenGraf which keeps my liver and I happy most of the time.
So, in a week to 10 days...I will share what the biopsy indicates and we will see how well I do at self-diagnosis.
Keep your spirits high...robin
Viral activity---thank you Hepatitis C
Stressor---initially I laughed and then smiled at my sweet hubby who drove me to the oral surgeon and said, "We know that one...it's got to be YOU". I'll not write his response but it was in good humor and spirit.
So, back to stressor...here is my personal list:
New crown placed at the exact site of the lump---9 months ago.
Liver Transplant---15 months ago.
Rejection Episode---discovered a couple weeks ago but probably chronic rather than acute.
My last thought (and this is "MY" idea to which the doctor agreed it could be a possibilty) is the twice daily dose of GenGraf which keeps my liver and I happy most of the time.
So, in a week to 10 days...I will share what the biopsy indicates and we will see how well I do at self-diagnosis.
Keep your spirits high...robin
Tuesday, January 27, 2009
We (My liver and I) are getting along better---by robin
Yesterday afternoon I received a fax of my requested labs and I am happy to report that in my own humble opinion (as I have no other to base my conclusion) my liver and I are getting along better and should be back to a peaceful co-existence soon.
Having an episode of rejection over a year after my transplant opened my eyes. This is the first time I EVER considered that a problem could occur. Having been in ICU about 12 hours after my transplant and going home on the fourth day, I felt invincable. Labs had never been "normal" and I'm not sure that they would have ever concerned me had the biopsy not forced me to admit that there were risks involved and yes...rejection could occur.
I hope that with the increase in medication that my body will remain a good "host" for my liver. So, the week begins with good news.
Keep your spirits high...robin
BTW...did you notice the "birthday" cake my daughter Jill made for my first anniversary with my liver? It's posted to the right of this column.
Having an episode of rejection over a year after my transplant opened my eyes. This is the first time I EVER considered that a problem could occur. Having been in ICU about 12 hours after my transplant and going home on the fourth day, I felt invincable. Labs had never been "normal" and I'm not sure that they would have ever concerned me had the biopsy not forced me to admit that there were risks involved and yes...rejection could occur.
I hope that with the increase in medication that my body will remain a good "host" for my liver. So, the week begins with good news.
Keep your spirits high...robin
BTW...did you notice the "birthday" cake my daughter Jill made for my first anniversary with my liver? It's posted to the right of this column.
Saturday, January 24, 2009
One in Ten VS One in Twelve---by robin
This is another learning adventure in the world of Thanskgiving Liver as it applies to Hepatitis C. I am active in forums that are in both the US and the UK. Statistics in the UK, on the prevalence of Hepatitis C, is that 1 in 12 citizens are infected with the virus. Now, it has been brought to my attention that in the US that statistic is more like 1 in 10. How scary is that?
Never did I dream that when I was diagnosed with Hepatitis C that the outcome would be my needing and receiving a liver transplant. Hepatitis C is now the leading cause for liver failure and transplants in the US.
Education must take priority. Most people are not aware that they are at risk. There is NO vaccine for Hepatitis C.
Have you ever received blood or a transplant prior to 1992?
Have you ever been a combat veteran?
Have you ever shared drug parphernalia (needles or straws)?
Have you ever been stuck by a used blood needle?
Have you ever been on kidney dialysis?
Have you ever had a tattoo or body piercing?
Have you ever held a job that exposed you to blood?
Have you ever shared personal care items (razor, toothbrushes, etc) with anyone?
These are just a few methods of exposure. If you can answer yes to any of these questions then you need to be tested for Hepatitis C.
Keep your spirits high...robin
Never did I dream that when I was diagnosed with Hepatitis C that the outcome would be my needing and receiving a liver transplant. Hepatitis C is now the leading cause for liver failure and transplants in the US.
Education must take priority. Most people are not aware that they are at risk. There is NO vaccine for Hepatitis C.
Have you ever received blood or a transplant prior to 1992?
Have you ever been a combat veteran?
Have you ever shared drug parphernalia (needles or straws)?
Have you ever been stuck by a used blood needle?
Have you ever been on kidney dialysis?
Have you ever had a tattoo or body piercing?
Have you ever held a job that exposed you to blood?
Have you ever shared personal care items (razor, toothbrushes, etc) with anyone?
These are just a few methods of exposure. If you can answer yes to any of these questions then you need to be tested for Hepatitis C.
Keep your spirits high...robin
Thursday, January 22, 2009
We Met Our Goal---by robin
Deb and I are happy to post that we have met our fundraising goal for the American Liver Foundation Walk of Life. Thank you to our friends who have so generously contributed in our behalf.
We have been "talking" back and forth, trying to figure out travel arrangements, motel rooms and time-line. The one thing that is unchanging is we will be at Percy Warner Park in Nashville, April 4, 2009, with our walking shoes on. If anyone has any suggestions on a motel, please post a comment as everything we have found online is more than we would "LIKE" to pay.
It's been several months since Deb and I had the opportunity to get together and girl talk. We both miss "seeing" each other and this walk will be as much a mental health bonding day for us as it will be to benefit a good cause. We would love to have anyone willing to join TeamThanksgiving and walk with us...we are really a lot of fun, if I have to say so myself.
Keep your spirits high...robin
We have been "talking" back and forth, trying to figure out travel arrangements, motel rooms and time-line. The one thing that is unchanging is we will be at Percy Warner Park in Nashville, April 4, 2009, with our walking shoes on. If anyone has any suggestions on a motel, please post a comment as everything we have found online is more than we would "LIKE" to pay.
It's been several months since Deb and I had the opportunity to get together and girl talk. We both miss "seeing" each other and this walk will be as much a mental health bonding day for us as it will be to benefit a good cause. We would love to have anyone willing to join TeamThanksgiving and walk with us...we are really a lot of fun, if I have to say so myself.
Keep your spirits high...robin
Monday, January 19, 2009
TeamThanksgiving ALF Walk---by robin
April 4, 2009, Deb and I will be in Nashville, Tennessee participating in the American Liver Foundation Walk of Life. We hope to have a few people join TeamThanksgiving. I have contacted the organizers to determine if doggie walkers will be accepted to walk along side of their human walkers and I will post the response.
Many of you reading have received an a-mail from yours truly begging for bucks and I would like to add that on the letter that is generated by the ALF, to me appears that the smallest donation is for $25...but if you look at the bottom of the form, you will find you can contribute any amount. Times are tight and $25 is a lot of money so we welcome any and all donations.
To those who I did not have your e-mail address or to whom Deb has not officially written yet (she is such a busy girl) you can go to the link to the right of this page and click on "TeamThanksgiving" to read and/or make a donation.
Our thanks go out to those who have made a donation on behalf of our team. GO...TeamThanksgiving!!!!
Keep your spirts high...robin
Many of you reading have received an a-mail from yours truly begging for bucks and I would like to add that on the letter that is generated by the ALF, to me appears that the smallest donation is for $25...but if you look at the bottom of the form, you will find you can contribute any amount. Times are tight and $25 is a lot of money so we welcome any and all donations.
To those who I did not have your e-mail address or to whom Deb has not officially written yet (she is such a busy girl) you can go to the link to the right of this page and click on "TeamThanksgiving" to read and/or make a donation.
Our thanks go out to those who have made a donation on behalf of our team. GO...TeamThanksgiving!!!!
Keep your spirts high...robin
Friday, January 16, 2009
It's Official...I'm Rejecting---by robin
Yesterday was the big biopsy day. The day was uneventful with the exception that this was also the day the hospital was moving so the wait was LONG. They had patients scheduled and no rooms or equipment available so everyone waited for the ONE available room.
OK...funny story. Apparently valium and I get along too well. I was dosed with a valium and some versed for the biopsy. As I was being wheeled back to my recovery room I promptly gave my cute little man-boy nurse, Andrew, a hug and asked for his e-mail address. It was all in good faith as he is participating in the American Liver Foundation Walk for Life in Nashville and I want him on Team Thanksgiving. Tom, being the very good husband and knowing his wife all too well handed me the all too cute male nurses name and e-mail address this morning, as he knew that I had no immediate memory of the event. I do hope that Deb and I have Andrew, who took such good care of me, on Team Thanksgiving.
Now to the not so funny. I am having an episode of rejection rather than the hepatitis affecting my liver. Right now I'll be treated with medication and will have labs rechecked in a few days with hopes that my liver function tests will be going down to a more normal level. This being my first experience with rejection feel kind of...rejected. But, it will work out.
The biopsy was not bad and I am excited about Andrew. Funny how our blessings come in most unexpected ways.
Keep your spirits high...robin
OK...funny story. Apparently valium and I get along too well. I was dosed with a valium and some versed for the biopsy. As I was being wheeled back to my recovery room I promptly gave my cute little man-boy nurse, Andrew, a hug and asked for his e-mail address. It was all in good faith as he is participating in the American Liver Foundation Walk for Life in Nashville and I want him on Team Thanksgiving. Tom, being the very good husband and knowing his wife all too well handed me the all too cute male nurses name and e-mail address this morning, as he knew that I had no immediate memory of the event. I do hope that Deb and I have Andrew, who took such good care of me, on Team Thanksgiving.
Now to the not so funny. I am having an episode of rejection rather than the hepatitis affecting my liver. Right now I'll be treated with medication and will have labs rechecked in a few days with hopes that my liver function tests will be going down to a more normal level. This being my first experience with rejection feel kind of...rejected. But, it will work out.
The biopsy was not bad and I am excited about Andrew. Funny how our blessings come in most unexpected ways.
Keep your spirits high...robin
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