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
Tuesday, January 13, 2009
Transplant Milestones (posted by UNOS)
Researchers began experimenting with organ transplantation on animals and humans in the 18th century. Over the years, scientists have experienced many failures, but by the mid-20th century, they were performing successful organ transplants. Transplants of kidneys, livers, hearts, pancreas, intestine, lungs, and heart-lungs are now considered routine medical treatment.
In the last 20 years, important medical breakthroughs such as tissue typing and immunosuppressant drugs have allowed for a larger number of organ transplants and a longer survival rate for transplant recipients. The most notable development in this area was Jean Borel's discovery of an immunosuppressant drug called Cyclosporine in the mid-1970s. This drug was approved for commercial use in November 1983.
Unfortunately, the need for organ transplants continues to exceed the supply of organs. But as medical technology improves and more donors become available, the number of people who live longer and healthier lives continues to increase each year.
Transplant Milestones in the United States and Canada
1954--First successful kidney transplant*Dr. Joseph E. Murray, Brigham & Women's Hospital, Boston, MA
1966--First successful pancreas/kidney transplantDrs. Richard Lillehei, William Kelly, University of Minnesota, Minneapolis, MN
1967--First successful liver transplant*Dr. Thomas Starzl, University of Colorado Health Sciences Center, Denver, CO
1968--First isolated pancreas transplantDr. Richard Lillehei, University of Minnesota, Minneapolis, MN
1968--First successful heart transplantDr. Norman Shumway, Stanford University Hospital, Stanford, CA
1981--First successful heart-lung transplantDr. Bruce Reitz, Stanford University Hospital, Stanford, CA
1983--First successful single lung transplant*Dr. Joel Cooper, Toronto Lung Transplant Group, Toronto General Hospital, Toronto Canada
1986--First successful double lung transplant*Dr. Joel Cooper, Toronto Lung Transplant Group, Toronto General Hospital, Toronto Canada
1989--First successful living-related liver transplantDr. Christoph Broelsch, University of Chicago Medical Center, Chicago, IL
1990--First successful living-related lung transplantDr. Vaughn A. Starnes, Stanford University Medical Center, Stanford, CA
*Transplant was the first of its kind in the world
Keep your spirits high...robin
In the last 20 years, important medical breakthroughs such as tissue typing and immunosuppressant drugs have allowed for a larger number of organ transplants and a longer survival rate for transplant recipients. The most notable development in this area was Jean Borel's discovery of an immunosuppressant drug called Cyclosporine in the mid-1970s. This drug was approved for commercial use in November 1983.
Unfortunately, the need for organ transplants continues to exceed the supply of organs. But as medical technology improves and more donors become available, the number of people who live longer and healthier lives continues to increase each year.
Transplant Milestones in the United States and Canada
1954--First successful kidney transplant*Dr. Joseph E. Murray, Brigham & Women's Hospital, Boston, MA
1966--First successful pancreas/kidney transplantDrs. Richard Lillehei, William Kelly, University of Minnesota, Minneapolis, MN
1967--First successful liver transplant*Dr. Thomas Starzl, University of Colorado Health Sciences Center, Denver, CO
1968--First isolated pancreas transplantDr. Richard Lillehei, University of Minnesota, Minneapolis, MN
1968--First successful heart transplantDr. Norman Shumway, Stanford University Hospital, Stanford, CA
1981--First successful heart-lung transplantDr. Bruce Reitz, Stanford University Hospital, Stanford, CA
1983--First successful single lung transplant*Dr. Joel Cooper, Toronto Lung Transplant Group, Toronto General Hospital, Toronto Canada
1986--First successful double lung transplant*Dr. Joel Cooper, Toronto Lung Transplant Group, Toronto General Hospital, Toronto Canada
1989--First successful living-related liver transplantDr. Christoph Broelsch, University of Chicago Medical Center, Chicago, IL
1990--First successful living-related lung transplantDr. Vaughn A. Starnes, Stanford University Medical Center, Stanford, CA
*Transplant was the first of its kind in the world
Keep your spirits high...robin
Sunday, January 11, 2009
Organ Donation---by robin
Saturday I attended a meeting for Organ Recipients of Arkansas in Little Rock. One of the attendees had had the opportunity to meet their donor family and shared the experience with us. It was so meaningful for me that I want to share my observations.
The donor family initiated the contact. Their 16 year old daughter had tragically lost her life in a motor vehicle accident. She had expressed her desire to be an organ donor on her drivers license. Her parents were able to honor her wish and in doing so made possible for another young lady to begin her new life.
What an amazing person that teen-age girl was. At the young age of 16 years she had made a decision that would forever impact the life of someone she had never met. No one would have ever imagined such a scenario occuring and how the tragedy turned into hope for another.
I'm asking each of you reading this blog to please consider signing the back of your drivers license to list yourself as an organ donor. You can also sign a living will expressing your desire to donate. Please consider giving the Gift of Life.
Keep your spirits high...robin
The donor family initiated the contact. Their 16 year old daughter had tragically lost her life in a motor vehicle accident. She had expressed her desire to be an organ donor on her drivers license. Her parents were able to honor her wish and in doing so made possible for another young lady to begin her new life.
What an amazing person that teen-age girl was. At the young age of 16 years she had made a decision that would forever impact the life of someone she had never met. No one would have ever imagined such a scenario occuring and how the tragedy turned into hope for another.
I'm asking each of you reading this blog to please consider signing the back of your drivers license to list yourself as an organ donor. You can also sign a living will expressing your desire to donate. Please consider giving the Gift of Life.
Keep your spirits high...robin
Friday, January 09, 2009
Terry Cullins almost got his liver---by robin
I just received a call from Terry's wife (the man trying to navigate the VA for his transplant). He has just got the call from Methodist Hospital in Memphis Tennesse. He GOT his liver!!!!!
Please hold both Terry and his donor family in your prayers. I will post more when I hear from Ruth about Terry's condition.
Keep your spirits high...robin
Received a call from Ruth about 2pm and they were unable to transplant Terry...the donor organ was not a suitable "match". They are disappointed to have been so close but realize that it was just not the "right" time or it would have happened.
Please hold both Terry and his donor family in your prayers. I will post more when I hear from Ruth about Terry's condition.
Keep your spirits high...robin
Received a call from Ruth about 2pm and they were unable to transplant Terry...the donor organ was not a suitable "match". They are disappointed to have been so close but realize that it was just not the "right" time or it would have happened.
Wednesday, January 07, 2009
First Wednesday of the Year---by Robin
Don't know any significance in this being the first Wednesday of the year but I decided to name this post with that title.
Now to serious business. Deb and I are planning to participate in the American Liver Foundation Walk for Life this spring. Amazingly enough, there isn't a fund-raising walk in our dear state of Arkansas so we will be attending in Nashville Tennessee. We hope to gather enough information to be able to come home and get enough support to have Arkansas host a "walk-a-thon" in 2010.
So, to make a long story SHORT...if you know us or we have your e-mail address, expect an e-mail from us begging for bucks for the American Liver Foundation. If we don't have your e-mail address and you would be willing to commit a few dollars for Team Thanksgiving, please leave a way for us to contact you. I will also be looking into ways to post our "team" information here.
Keep your spirits high...robin
Now to serious business. Deb and I are planning to participate in the American Liver Foundation Walk for Life this spring. Amazingly enough, there isn't a fund-raising walk in our dear state of Arkansas so we will be attending in Nashville Tennessee. We hope to gather enough information to be able to come home and get enough support to have Arkansas host a "walk-a-thon" in 2010.
So, to make a long story SHORT...if you know us or we have your e-mail address, expect an e-mail from us begging for bucks for the American Liver Foundation. If we don't have your e-mail address and you would be willing to commit a few dollars for Team Thanksgiving, please leave a way for us to contact you. I will also be looking into ways to post our "team" information here.
Keep your spirits high...robin
Saturday, January 03, 2009
2009 already?......by Deb
Hard to believe it's 2009, today it feels like it's been a year since I've had a chance to visit our blog. So, much has happened we've had holidays, family visits, shopped till we dropped & ate till we popped! The decorations are tucked away for another year & we proceed to get back to normal. Whatever we perceive normal to be? Normal for me seems to be expecting the unexpected, deal with it & charge ahead with an 'anything goes, everything counts' attitude. Life is so precious, magnified so after a life saving transplant that it leaves me to wonder. Am I rushing through the days or simply filling each day to the top in fear that each one could be the last one that finds me in good health? A question that won't ever be answered. If it all has to get done, it will all get done, forge ahead! With that said, to all who take the time to read our blogs, Happy New Year, be you simply curious, waiting for a transplant, recovering or a donor family coping...I wish you the very best in 2009.
Be~Positive, Deb
Be~Positive, Deb
Thursday, January 01, 2009
Happy 2009---by Robin
January 1, 2009 and all I can say is whoohoooo. For those who "know" me, that's a pretty common statement and for those that don't know me on a personal level, I have a tendency to toss out a whoohooo because I like the sound of it.
I learned so much in 2008 that I wonder if I have enough "good" brain cells to keep up the pace in 2009. Bet I figure out a way even if I have to shake and wake up the dormant grey matter in my brain.
Some of my learning surprises for 2009 is that "they" remove your gall bladder during a liver transplant. Did I know that one? NOPE. Next thing I learned is that you should follow a low fat diet after transplant. Did I know that one either? NOPE. Now for the last tidbit of transplant trivia...they do NOT reconnect the nerve endings to the new liver when you are transplanted. So, if you have "liver pain", it's not your liver that is the source of your discomfort.
Now, here is a bit of information that isn't related to transplant or liver problems or anything other than being something I found interesting. Did you know that you can develop an allergy to tattoo dye, even after several years of having received the tattoo? Me either...totally missed out on that bit of information.
Wishing everyone a Happy New Year.
Keep your spirits high...robin
I learned so much in 2008 that I wonder if I have enough "good" brain cells to keep up the pace in 2009. Bet I figure out a way even if I have to shake and wake up the dormant grey matter in my brain.
Some of my learning surprises for 2009 is that "they" remove your gall bladder during a liver transplant. Did I know that one? NOPE. Next thing I learned is that you should follow a low fat diet after transplant. Did I know that one either? NOPE. Now for the last tidbit of transplant trivia...they do NOT reconnect the nerve endings to the new liver when you are transplanted. So, if you have "liver pain", it's not your liver that is the source of your discomfort.
Now, here is a bit of information that isn't related to transplant or liver problems or anything other than being something I found interesting. Did you know that you can develop an allergy to tattoo dye, even after several years of having received the tattoo? Me either...totally missed out on that bit of information.
Wishing everyone a Happy New Year.
Keep your spirits high...robin
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