2008...What a year---by Robin

Seems that I'm finding something of great significance to attach to the last couple of years so that will be my New Year Resolution...to identify the highlight of each coming year and document it. So...here goes my start:
2007--Received the gift of life in the form of a liver transplant, so this will mark my "new" beginning.
2008--Met my co-moderator Deb and had my "first" birthday with my new liver.
2009---Anticipate slaying the dragon (otherwise known as successfully eliminating the hepatitis C virus through interferon/ribavirin treatment).
Keep your spirits high...robin

Christmas Eve---by Robin

Christmas Eve is here and it will be a time to spend with my husband. We have had our time with family (with a week-end of the "little" grands staying over) and have reached out to friends through cards. Tonight will be special, as it's a time for "us".
We will put out of mind, the idea of an upcoming ultrasound and liver biopsy, the "nastiness" of the interferon and ribavirin and enjoy tonight as it is,the eve of Christmas.
This day, as all are, is a gift from my donor family. So tonight as we warm by the fire and sit in awe at the beauty of the lights and the glistening of the tinsel, with the peace of knowing that health is "our's", we will have hope that tonight our donor family is able to have a loving and meaningful holiday.
Keep your spirits high...robin

Changes to come---by Robin

Tomorrow, family will come to celebrate Christmas, the one I didn't think I'd be here for. I've been busy cooking and cleaning, wrapping presents and preparing for the three youngest grands to spend the week-end.

Monday, I go to Little Rock to see the doctor about starting treatment again for my hepatitis. This is met with mixed emotion as the treatment nearly killed me, two years ago. I was a rapid responder to the interferon and ribavirin so my hopes are my liver and I will successfully tolerate the medication and kill this virus.

Keep your spirits high...robin

Holiday Thoughts.....by Deb

Holiday Stress, even gloriously happy to be here transplant recipients can feel it. Between work & holiday prep I feel it. Yesterday driving home from Christmas shopping feeling 'the Stress', one of the songs that plays on this blog came on the radio. Silent reflection hit me, in the daily rush of the season along with obligations out of my control, I miss my friend Robin & I's daily e-mails. I miss my quiet time of thought to post on our blog as I should. I miss being in contact with my family as much as usual. Then as naturally as breathing, my thoughts were directed to my donor family & the loved one that they are missing this holiday Season, the loved one they've been missing since that November day in 2005 when they lost a life & I got mine back. It would be so wonderful to somehow meet my donor's family & find a way to honor my donor. More so, at this time of year of blessings and family, that is also the anniversary of their parting this life & giving life in the process. One would be right in assuming my thoughts here are, should any donor family read this post, Thank You & May God Bless, you are a part of Miracles much like the Season. B~positive, deb

Liver Failure, Heptitis C and Online Forums---by Robin

We have had several people contact us or post comments who have Hepatitis C and are either listed for transplant or are in the process of being listed. I'd like to list some online forums that may provide additional support for them, in addition to some sites that are available for all transplant patients. If you are aware of a support group that is online, please feel free to post a comment and we will add it to the list.

WWW.HCVAnonymous.com

WWW.forums.delphiforums.com/liverfailure/start

WWW.TransplantExperience.com

WWW.HCVets.com

WWW.HepCAware.org

WWW.Transplantbuddies.org

WWW.HepCNomads.co.UK

WWW.Livertransplantsupport.co.UK


Keep your spirits high...robin

HELP NEEDED--VA and Transplants @ UAMSC---by Robin

I have received a phone call asking for anyone who may have experience with the VA and UAMSC (University of Arkansas Medical Science Campus)solid organ transplant division, to please contact:

Ruth Cullins @ 870-897-7708 or 870-268-8740
or by e-mail @ sscmtnhome@centurytel.net or msparkmanssc@hotmail.com

This is in regards to husband/father, Terry, who is very ill and currently hospitalized in Memphis. He is in need of a liver transplant and they are having difficulty navigating the VA system to be listed in Arkansas. They have private insurance that will help with the cost in addition to VA benefits.

If you are aware of anyone who has experience with UAMSC solid organ transplant division with VA benefits, please contact the Cullins family or leave information for them. They are desperate at this time and welcome any assistance.

Busy Times and Busy Minds---by Robin

This is perhaps the busiest month of the year and I've notice quite a drop in the number of "hits" on this blog. So, I'm not sure if things have peaked and there is no longer any interest or if people are just busy.
There were so many hopes that we had when Deb and I started this web-site. We wanted to have a place to connect with not only each other but people who were traveling the same path as we did; the pathway of an organ recipient and to reach out to donor families. I question if we failed at both.
If my donor family should come across this site, I wish you well. It has been a bit over a year since you gave me life in your time of loss. Know that I will do my best to protect and care for that part of your loved one that we share.
Keep your spirits high...robin

Donor Families---by Robin

With Christmas now approaching I wonder with great frequency how my donor family is doing. It's never far from mind whether they are able to find joy in the upcoming holiday season and peace with the decision they made. There is so much I want to tell them but I fear if I ever had the opportunity, I would be at a loss for words.
I've come to think of my liver in somewhat the same sense as an adoptee must feel in their desire to meet their birth family. No, I've no "real" personal experience with adoption but I have that feeling of wanting to know about my donor and "his" family.
I don't know for sure why I say "his" but I feel that is correct. There are other things I "feel" may be factual but there is nothing to base this on. I want to know more about this person who is so very connected to me. I have a longing, an internal termoil that something is missing...information about this shared union of person and organ.
Does it make sense? Perhaps this is something that only a recipient understands. Again, I wonder does it make sense to my donor family?
Keep your spirits high...robin

First Anniversary Celebration---by Robin

The year is almost over and it is amazing when I think back over all the changes that have occurred in the last twelve months. Today I am in Florida with my daughter, son in law and three of my five Grandaughters where we have experienced the Magic Kingdom. I think it may be even more special in that I didn't think I would be here, much less able to ride "Space Mountain" and "It's a Small World". For this opportunity, I owe my donor family; without the gift of organ donation, I'm not sure I would have been here with them, or even be alive.
Keep Your Spirits High...robin

Loss of a Member of the Organ Recipients Association

JOHN HARRISON RYALS, 73, of Little Rock, Ark., went to be with the Lord on Thursday, Nov. 28, 2008. He was born on March 7, 1935, in Mena, Ark., the son of the late Frank and Leona Priddy Ryals. He was a graduate of Mena High School and worked in Central Sterile Supply at University of Arkansas Medical Sciences. He was a Christian of the Assembly of God faith. Everyone who met Mr. Ryals loved and respected him for his honesty and caring way.
He is survived by his loving wife of 47 years, Jo Ann Posey Ryals; one son, John David Ryals of Little Rock, Ark.; two sisters, Ina Jones of Waldron, Ark. and Erma Duncan of Watson, Okla.; nine nieces and nephews.
Funeral services will be held at 10 a.m., Wednesday, Dec. 3, 2008, at Roller-Chenal Funeral Home Chapel, (501) 224-8300, with Pastor Joe Jackson officiating. Graveside services will be held at 3 p.m., Wednesday, at Cherry Hill Cemetery in Cherry Hill, Ark., with Pastor Kenny Posey officiating.
The family will receive friends from 6 p.m. until 8 p.m., Tuesday, at the funeral home.
Memorials may be made to Arkansas Regional Organ Recovery Agency (ARORA), 1100 N. University Avenue, Little Rock, Ark. 72207.



From today's Arkansas Democrat-Gazette

Thanksgiving Day Liver Recipients, Arkansas Democrat Gazette---by Robin

http://tinyurl.com/5jc4he

Above is a link to an article written by our "state" paper about Deb's and my journey to meet. I hope you find it an interesting read. I am sorry that I can not get this to "link" without you having to cut and paste it. So, if you are inclined to want to cut and paste to read, we appreciate it. Keep your spirits high...robin

The Power of the Internet---by Robin

Today when I was thinking about what needed to be "posted", I took a moment to read a blog I am following (it is linked to this one if you wish to look at it). It's a mother's plea for her teen-age daughter's life and the mother is an e-bay friend of my daughter. This young girl, who had a liver transplant as an infant, is now in need of a kidney. No family is suitable as a donor because of the additional antibodies in her body due to the liver transplant. The mother reached out using the web to find possible donors.

This is where the story turns incredible. A potential donor has been found and it appears the transplant will occur on Dec. 26th. Through the power of the internet, donors from every state and several foreign countries sent in applications to be tested. Thanks to another willing organ donor, this time a living donor, a young girl will receive the best Christmas gift of all, a new kidney.

Reflections.........by Deb

Last night, November 23, at appx 10:30PM, was 3 years to the day when I received word that a donor liver for me was available. Also, 3 years ago it was the night before Thanksgiving. I could go into a multitude of emotions, questions, concerns, feelings that have crossed my mind today, but it won't resolve the deep wish that I knew my donor's family. Then I could hopefully offer them some comfort, wish them well & Thank them for their gift of life that they had the courage to give me. I do wonder,,,was my donor a family member headed to someone's home for Thanksgiving, was it a car accident? Was my donor preparing for Thanksgiving company & fell ill? Or maybe a battle lost with illness of some kind or a fight to recover from an accident other than an auto accident? Due to time restrictions in transporting organs, and my transplant being around 7AM on the 24th, it's evident a family had to see a loved one passing in the wee hours of the night and make a decision to share that life with strangers. I wonder before my own transplant, could I have been that giving should my loved one have passed away? I've always signed my donor card, but then I wouldn't be around to know what was happening. Mainly I wonder is my donor family happy this year and planning a family get together, instead of a funeral?I think about my own family, had I not been granted this second chance, what would my family be going through this year? Simple things we take for granted are magnified around this date. Would someone bake my son's favorite pie?, whose home would my family be gathering at? The mix of thoughts are vast, some tell me not to dwell and I'm really not, more so, I'm feeling gratitude and a sense of being alone with my emotional 'To-Do' list that gets stronger when the anniversary of my transplant is here. It's strange to be so happy, yet sad, grateful, yet frustrated, restless at heart might be the best analogy.I carry a part of this person, their family, that I owe so much to, genuinely care about and yet will probably never know.I hope someone has given the emotional support to my donor's family and they realize just how greatly their actions have affected my life. I truly do treasure each day that I have been blessed with.
B~Positive, Deb

My First Transplant Anniversary---by Robin

November 22, 2008, my family will gather to share this day of Thanksgiving. We also know my donor's family will share time remembering the loved one they lost this day. Though we may not understand their feelings, today we feel their love. It lives inside of me.
So, today while we gather to celebrate the milestone of my first transplant anniversary along with having our family Thanksgiving. We give thanks for the compassion of a stranger. We feel a kinship, a connection to you. Today we take the time to remember my donor and the family that gave me life.
Sharing your love...Robin and family

Posting comments---by Robin

It was mentioned to me that it is difficult to read or post a comment on our blog. Since Deb and I want this forum to be interactive and neither of us have found out "how" to make the comment column easily visable with an ongoing list of responses,I thought...TA-DA, I need to make a post on "comments".
So, if you would like to make a comment, suggestion, share personal information or experiences on this blog, note at the bottom of each post there is a place that says "comments". If you click on the word "comment", it will direct you to another page where you can post or read other's comments.
Sadly, I do not know how to make the list ongoing so you do have to go to each days posting to see if a comment has been made or to post your own. If someone who is more internet/computer savvy than us knows how to make a separate column for comments to be posted that is more easily accessed, please post that information or e-mail us at www.TeamThanksgiving@MSN.com.
We would also like to ask you to please "sign in" when you visit. We have no way of telling who you are unless you "sign in" using a log-in or name we recognize.
Keep your spirits high...robin

Conflicted Times---by Robin

I've postponed writing the last few days because I am feeling a great deal of conflict at this time. I do have an idea the source of the conflict but I believe time will be the only resolution, if it does resolve.
Yesterday, I went for my first annual check up after transplant. It was uneventful with the exception that all of my liver function labs are elevated. Seems the Hepatits C is roaring it's ugly head.
Saturday, four days from now, will be my transplant date. Though I want to feel nothing but happiness there is this internal turmoil. I know that while my family is sharing in the joy of my good health my donor family is experiencing the anniversary of their loss of a loved one.
In each day I hold in my heart and soul warm thoughts of my donor family. I hope they have found a sense of peace and satisfaction with their decision to make my first anniversary possible.
If by chance my donor family would happen upon this blog, I hope they recognize that they are always near, in my thoughts. I am never alone as I always have the presence of their loved one inside of me. I hope they realize my gratitude and appreciation.

Annual/Anniversary Check-ups...by Deb

Tiz the season, for annual checkups for obviously Robin & I both. Each one a milestone, a confirmation of sorts that you've made it another year.My first annual checkup was such a thrill, more than one doctor stepped in, my coordinator was there. Quite close to a celebration. I had to go see the diabetes practitioner after wards. I was given the all clear on being diabetic, no more shots. Yeah.. *Some transplant patients are diabetic following surgery, I was lucky to be one of those for whom it didn't last.My Transplant doctors didn't require I come back for a whole year, which was great since I'd figured it might be 6 months. I had a bone density test in addition to liver enzyme tests, as well as having my labs extended from bi-weekly to monthly.Second annual checkup, noted difference, I saw the doctor, missed my coordinator & was sent home for another year with monthly labs. Most recent, November 12th, 2008... a 12 hour-35 minute , solo round trip to St Louis for annual checkup #3. I saw one of my doctors, we had a nice chat, he gave me a quick going over. Told me if my lab work is good in December I can start on a schedule of labs every 6-8 weeks. Missed meeting my new coordinator. This is good, it's a sign that all's well and I'm doing fine. Yet, with each year I find myself in the survival column of national statistics I feel a bit let down that my doctors, coordinator and nurses don't have party hats and horns for my liver & me. I'm still Thrilled!!So, I leave happy, content with "see you in a year" & deep down Pray that is true.. Barring something drastic, I will consult my family doctor for routine health care & call in my vitals to my Liver Docs when I have my labs done. Plus, hope for another pretty day in November 09 to drive to St Louis for Annual Checkup 4.
B~Positive, Deb

Family & Friends....by Deb

This blog is to Honor & Thank my family, without them I believe my health battles would not have been worth fighting, they gave inspiration to keep going when I was too weak to function without their assistance.
Jerry, my beloved cowboy, with such gentleness. For years you watched me change from your energetic wife to a confused, withdrawn woman with failing health. I would not attempt to count the miles you rolled me in a wheelchair, took me shopping, cooked and cleaned. Not once did you ever utter an unkind word. There were times you had to dress me and assist me with daily living tasks. Not once did you show any sign of ever giving up on me, always encouraging, loving and keeping my spirits up. Those years were rough for you and I can never repay you for your strength, love and care or the hours you spent by my side ready to do anything I ask of you. I will always love you and cherish you, you are my hero.
My Sons, Clay & Justin..you each played a very different role.
Clay my eldest son, though you were far away across the country, you were always with me in spirit. The words of comfort you gave me during our long talks in the wee hours of night while everyone else was fast asleep. Those words your compassion & Prayers helped me carry on. You listened when I babbled on with random thoughts, how patient you were for one so young. The thought of seeing you again at Christmas gave me courage to face what ever necessary to get well and be home.
My youngest son Justin, Bless you, being closer you were there to relieve your Daddy to run home and take care of things. You sat with me, fed me, helped me attempt to find a comfortable position, only to be right back up in five minutes to try again. The rough personal time you were having at that time also in many ways let me know there was no way I could give up and leave this child behind to find happiness. Thankfully we both made it past our struggles, and you did find happiness. My transplant allowed me to be at your wedding healthy and I enjoyed every moment of it. We danced.
To my Daughter in law Alicia, Thank you for becoming a part of our family, I look forward to many years of our friendship. When we talked while I was in the hospital I prayed to someday be able to call you my daughter. You were so sweet, it was good to know your were a part of my son's life.
My Dear Sweet Mom in law, once again you came to my aid, arriving just before Christmas with Clay who had flown into Nashville to drive over with you. Your calls during my hospital stay were always an encouraging joy for me. Conveying all the family's well wishes to me daily meant so much to me.Then your extended stay when I got home, it was so good to have you with us during that time.
My own Mom, departed 11/6/06 almost a year after my transplant, but we talked daily. She had her own battles to fight with breast cancer. But seldom let me know how bad she was instead she was always ready with a joke or laugh. Right down to as silly of pranks as she could play over the phone. She kept me laughing.
My Long time friend Linda, your cards and calls were frequent and most cards were funny to keep me smiling. Calls were somewhere along the line of a Get Well drill sergeant with a under tone of love and caring. You freshened up our home, cooked our supper the day I came home, we hugged & cried when I arrived and you quickly left to avoid exposing me to any unnecessary germs.
The rest of my friends Off & Online and family, your cards, calls, Prayers, flowers and genuine show of caring will never be forgotten. Each of You are the true meaning of what I have to be Thankful on Thanksgiving.You are all loved and admired by me in your own unique way.
Love, Your Wife, Mom & Friend, Deb

Family---by Robin

At times, it is difficult to decide where we want to go with this blog. We want to both encourage organ donation and to express our gratitude to our donor families, but I think that Deb and I both agree, we also have a lot of appreciation for our families. The progresion to liver failure is generally over a course of years. Often, it's the family that is left with the burden of care. That was certainly the situation in my case. I know I have never personally thanked them and I want to take this opportunity to do so.
Tom, my husband, you are my foundation and the rock I lean on. You are here in the best and the worst of times. I always thought I would be your caretaker but you proved me absolutely wrong...and you know how hard it is for me to admit any wrong. I will always be amazed that I got so lucky to have had you come into my life. You make my heart smile.
Shane and Jill, my children, I know it was hard to see your Mom when she didn't even know you existed. I'm greatful for the times you invited me to your house to share in the "grands" lives and when you brought them to my house when I couldn't drive. You have listened to me when I babbled with senseless thoughts and wild dreams. Thank you for the calls, cards and visits when you had your own families to care for.
Scott, my son of another Mom, I appreciate you being so much like your Father. You have always been there for me. One of my fondest memories is being in the hospital and my asking you promise me that you would "make" your Dad put me in a nursing home if I became more confused...like you can MAKE him do anything he didn't want to do.
Lynn and Gail, my sisters, you both offered to be living donors along with my daughter, Jill, so that pretty much sums up our relationship. Lynn, you went with me when I was air-lifted to Miami and Gail, you sat with Tom during my actual transplant. I'm so glad I was given you as my sisters.
Callie, Sarah, Rhiannon, Madison and Rylie, my grandest of grandaughters, you are my joy. My spirits soar when each of you is near. Rylie, I almost didn't get to meet you and now you are two years old. You girls didn't know this but I always carried a picture of y'all when I was in the hospital. I needed to know you were near.
Last, I want to say thanks to friends and extended family. I won't list names because I don't want to leave anyone out, and the list would be quite long. I have the best group of friends from California to Florida that one could imagine.
So, today, I give thanks to family.

Falling into Fall---by Robin

Looking outside my window I am awed by the beauty of the leaves changing colors. The brillant reds, oranges and yellows displayed with the fading greens and also by long gone brown leaves; all seem to be welcoming the fall with ornate colors not displayed in previous years. I wonder if this simple phase of nature is a truely remarkable show of color or if perhaps the last few years the beauty was clouded by high ammonia levels due to liver failure secondary to Hepatitis C.
Clarity of mind is something most of us don't think about as young and middle age adults unless you are dealing with it on a personal level. It's like the question that I've heard posed..."would you rather have physical health or mental health" and I still don't know if there is a "suitable" response.
Losing the ability to remember and then being in a position to have mental clarity is something few will experience. I remember being in ICU after receiving my liver and having the cognition to remember names and faces. I vividly remember looking at all the lines going into and coming out of my body and stating "my urine is so pale, it's not tea-colored" after looking at my catheter bag. I remember the initial anxiety I felt when I did not receive my dose of medication that helped clear my body of the toxic ammonia (I now had a healthy, functioning liver and would never need that medication again). I remember events that perhaps would have been best to remain forgotten. I remember the look on my husband's face when he initially saw me after my surgery.
Falling into fall, I am awed with the beauty of the season and also the beauty of what organ donation has done for me. I have clarity. I can follow a conversation. I can respond to a question appropriately. I can remember.
I still don't know the answer as to whether I would rather have physical health or mental clarity because they came hand in hand for me, a packaged deal. Without one, I would not have had the other. Without my donor family, I would have neither.

First successful living-related donor transplant on Thanksgiving Day 1989---by Robin

Life always holds surprises when you least expect them. Today, my surprise came in the form of a Google search when I read that the first successful living-related donor transplant also occurred on Thanksgiving Day. The transplant was performed at the University of Chicago, Thanksgiving Day 1989, when 21-month old Alyssa Smith, of Schertz,TX, received a portion of her mother Terri's liver. Alyssa suffered from biliary atresia, the most common childhood cause for liver transplant.
To me it is amazing to know that man has the ability to take a piece of a living or a deceased donor liver and transplant it into a gravely ill person and give them health. For that to have happened to me last Thanksgiving gives the holiday special meaning.
There is a feeling of being a "we" that I've developed. The "we" being my liver and me. I no longer walk in solitude as there is this connection that I feel to my donor.
As the time comes closer to my transplant anniversary date, I have a sense of longing to meet my donor family. I need to know they have found comfort and peace with their decision. I want to show them how their compassion has turned life around for my family and me. Maybe it is selfish but I want to know about the person who's liver has made it possible for me to be here this Thanksgiving. I hope that my donor family senses the care and concern that I feel for them at this time of the year.
And always...Keep your spirits high...robin

My Journey to Transplant---by Debbi

Once most people find out you've had a Transplant of any kind the question, "How did you know?, When did you decide? Why?", among many others usually comes up. So, today I thought I'd answer those questions about my Transplant Journey. It seems to have all started or at least first came to my attention when I broke my ankle in 2000, ironically also in November, the 12th. My doctors then due to blood tests told me there was a slight problem with my liver. Admittedly I'm stubborn & refused to heed any warning. For the next four years my weight slowly crept up, I began feeling something akin to panic attacks, confusion, dizziness, intense itching & the lack of being able to keep food or drink down. When I finally came to terms that indeed something was 'wrong' with me I went to a local doctor with my bags packed, as if I knew I would be hospitalized. Right I was. The diagnosis was cirrhosis, by a combination of fatty liver disease, a few too many beers with the guys & possibly a hereditary problem with hemochromatosis which my Dad had. I'd like to add here , not all liver transplant patients are alcoholics nor was I, as soon as the doctor told me to stop all alcohol it was just that simple, even more since I had already stopped due to how ill I was. I did and have not even wanted any alcohol since. The next year from November of 2004 until my acceptance of the need for a transplant was spent in a flurry of hospital stays from overnight to a few days for tests and blood transfusions, intense itching leading to sores and often having the ascities drained from my bloated abdomen. Which was a major but temporary relief, for a few days breathing was easier. I took diuretics, ulcer medications (since I also was diagnosised with bleeding ulcers) and a battery of other medications in an attempt to stabilize my condition. I also enjoyed 5 months of what seemed to be a miracle recovery, with normal weight, energy and was again able to walk and enjoy life. All too soon it was evident my liver again was in failure, within a few short weeks my body filled with fluid, the itching, confusion and lack of mobility returned. At wits end still in denial I asked my doctor to have the ascities drained, still thinking if I could just get the fluid out of me, I could keep it out. In one day a massive amount of fluid was drained, leaving me dehydrated and too weak to move alone. Three days of laying on my couch in pain too weak to move, even breathing was laored, finally I told my husband I had to go to the hospital ER or be dead by morning. Which was pretty much agreed upon when I arrived at the emergency room. Within 4 days I was in St Louis, MO being accessed/screened/tested/scoped etc....to obtain a Meld Score on me and qualify or null me as a candidate for the 'wait list'. I did make the list on the morning of November 23rd, 2005. 13 hours later I received a call in my hospital room that a liver was available, November 24th, 2005 my life changed forever. I view it as my 2nd birthday in many ways. I owe so much that there is no way to repay my medical team or doctors, definitly not my donor/donor family, no words to express the depth of gratitude. Even searching for words is impossible, there are not words to convey the feeling a recipient has. Simple thou heartfelt, human words can't do justice to the sacrifice or our gratitude and concern for our donor family. That is a brief of my journey to transplant, like any journey once you arrive there are still many roads to travel, bumps along the way to reveal, each one another topic. Lastly I would like to add, the moment I found out I was receiving a donor organ it was a joyous and yet frightening moment, still somehow peaceful. Then almost instantly turned into great concern and Prayer for my donor's family. Their heartbreak, their Thanksgiving's will never be the same, their sacrifice and courage to allow their sorrow to become someone's joy. I don't know them, yet I love them and think of them and the part of them I carry with me daily. Someday it would be wonderful to meet my donor's family, learn about my donor and find a more personal way to honor them.
B~Positive, Deb

Organ Recipients Association of Arkansas---by Robin

Today, Tom (my hubby) and I attended the Organ Recipients Association meeting of Central Arkansas in Little Rock, and I was impressed that there was such a group locally. I'd searched all avenues (or thought I had) and then found this group, almost in my back yard, so I want to give them a "shout" here.
This amazing group of people from all walks of life have bonded together to share the experience of having been an organ recipient and/or family member of an organ recipient. They actively work with ARORA, Arkansas Regional Organ Recovery Agency, which "coordinates donor recovery and provides dignity, honor, and respect to both donor families and recipients". ARORA serves 64 counties in Arkansas and is a part of United Network Organ Sharing.
One thing I learned, much to my surprise, is that you are NEVER past the concern of rejection of your donor organ. I was under the misconception that once you made it past your one year anniversay, the incidence of an episode of rejection was minimal. It was an eye-opener but it reinforced my idea that there is a major need for an arena of support and education for patients, post transplant.
I give a "high-five" to Dave McNully for heading up this group and extend an invite to attend one of their meetings held the second Saturday of each month at Baptist Health Medical Center-Little Rock, Gilbreath Center. If you need further information, contact Dave at dgmcn@sbcglobal.net.
How great it is to meet others who share the bond of being an organ recipient. There is an understanding that is shared among us that may not be completely understood by our family and friends. In fact, I may even be so bold as to say, it's not completely understood by ourselves. But, the bond is there, apparent by the fact that when we meet, we are linked together by common experience. We wake each morning with the knowledge that we are here because of our donor family and we go to bed at night with that same acute awareness.

Are there words? by Robin

Today, as I was making changes on our blog, this question came to mind and will not leave; Are there words to convey to your donor family that adequately express your feelings about having received the "gift of life"? I really do not think so and feel "thank you" will never be enough.
One day when the timing is right, I hope we meet...my donor family and I.

Liver Failure and Hepatitis C---by Robin

Thought I'd start this post at the beginning of my journey with liver failure. I know that everyone has a different diagnosis and path they go down before being listed and receiving a transplant. I'm aware that many never receive what I believe to be the most altruistic form of giving, organ donation or the Gift of Life.
The year 2002 came with a big surprise. After several weeks of constant fatigue, nausea and inability to eat, I was diagnosed with Hepatitis C. I always thought I was pretty informed about most diseases, being an RN, but I found I under-informed and so were the majority of healthcare workers.
I have found that the leading cause for liver transplants in 2008 is liver failure related to Hepatitis C. It makes me wonder why there are no public service announcements about hepatitis C? Where is the funding for research and treatment? Why was this disease that is transmitted via blood, not tested in our blood supply system until 1992? Why does the military still use airgun immunizations when it has been proven as a method of contamination and exposure? How do manicure/pedicure salons remain open and not have to post the risk of exposure?
Another real concern is, how many times do we have to have mass exposure to this virus by the medical community, such as the clinic in Las Vegas who recently exposed thousands of patients to hepatitis and HIV to save a few dollars, using a single dose vial of medication for multiple patients? Where is the responsibility for something that is nearing crisis mode? This feels too much like the HIV fiasco of the 1980's.
So, I will continue to educate people about hepatitis C, exposure risks and encourage testing. People who don't think they have risk factors...are wrong. I'll close this part of my post but it won't be the last you hear from me on this topic.
Keep your spirits high...robin

Labs forever---by Debbi

Since we're on Lab work, after my 1 year checkup I was allowed to schedule my own labs on a monthly basis. It's simbolic of growing up as a transplant recipient. Still even with once a month it's necessary to plan around 'lab time' to a degree. I'm lucky to have a wonderful relationship with my lab tech & she is well aware of the medication schedule being an important part of when we draw the blood sample. Each time the level of anti-rejection meds in our system at time of the next dose is measured, to help in adjusting the dosage necessary to avoid rejection. A good and informed relationship with your lab tech is key to getting in/drawn & out to take your schedued meds as close to on time as possible. One noted difference Robin & I have found in our two transplant centers is mine requires I call in my vitals, BP, weight & temperature each month on the day I have my lab work done, she isn't asked to do this. We don't know why? But, it makes for interesting conversation over crab cakes.

B~Positive, Deb

Labs---by Robin

This morning at 8am I had to be at the out-patient lab of our local hospital for scheduled blood tests.
Prior to getting transplanted, I had labs drawn every three months, unless there was some medical reason for an earlier test. UNOS updates their files every three months to determine MELD scores, which determine who gets an organ when one comes available.
When I first came home from the hospital, I would have blood drawn three times a week. The frequency decreased to weekly labs at three months after surgery and at nine months I was able to have blood drawn twice monthly.
I know it doesn't sound like I'm having labs checked "that" frequently but there are considerations such as going on vacation or illness. Not much of a problem if you are to be away from home and are able locate a facility that will do your labs, but they not only need to be drawn every two weeks but they are timed. If you are changing time zones, it can be a problem because your anti-rejection meds are taken every 12 hours and your labs must be drawn 11-13 hours AFTER your last dose of medication, regardless of what time zone you have traveled from and to.
I'm hoping when I go for my one year anniversary visit with my transplant surgeon, Dr.Youmin Wu, he will give approval to my having blood drawn on a monthly basis. Believe me, my poor veins are hoping that they won't get "needled" quiet as often. WhoooHooooo.
Keep your spirits high...robin

Transplant Statistics---by Robin

Today I researched the data base at United Network for Organ Sharing (http://www.unos.org/) and found some statistics regarding transplant. This information was current as of 3:46pm.

There are 100,431 people listed in the United States in need of a transplant.
In Arkansas, there are 328 people listed for transplant.

A partial breakdown of the U.S. list is:
77,759 patients waiting for a kidney
16,010 patients waiting for a liver
2,687 patients waiting for a heart
2,111 patients waiting for a lung

In Arkansas there are:
253 patients waiting for a kidney
37 patients waiting for a liver
18 patients waiting for a pancreas
6 patients waiting for a pancreas and kidney
22 patients waiting for a heart

From January through August of 2008:
18,660 Total number of transplants performed in the U.S.
14,511 organs came from deceased donors
4,149 were from living donors

From January through August of 2008, there were:
9,491 donors
5342 were deceased donors
4149 were living donors

Getting Started ll---by Debbi

Robin covered our meeting each other well. It was exciting for me after being in the UK forums for months to discover the "new kid" was also in Arkansas. Since there was no real face to face support groups in my area that I was aware of, the hope of our actually meeting in person was high. Our meet in person was also quickly arranged & we've been close since. Thinking back a few days ago when asked how long we'd been friends we both were a bit in awe that it was not as long ago as it seems. Frankly, it's difficult to recall not having Robin in my life. She may think of me as her mentor in our transplant journeys, but she is my advisor as well with her RN background, often putting my medical questions, lab test confusion & concerns at ease.

We do share a goal, of the desire to bring more Awareness of the need for donors, a place for recipients, donor families & families affected by transplant issues to connect.

B-Positive, Deb

Getting started---by Robin

This whole blogging process is new to me so I am going to jump in and attempt to make something of this site. I have a feeling that Debbi will be adding her comments soon.

Deb and I met online in January of 2008. I was having medication problems and was looking for some kind of confirmation that my experience was "normal". She answered my post in a UK liver transplant forum and shortly afterwards, we began swapping e-mails.

We found that we shared much more than having received our "gifts of life" (livers) on Thanksgiving Day and became fast friends. Now, I can't imagine not having her for support and as a mentor in my life.

One thing we both discovered is we had a lot of shared experiences prior to our transplants and then afterwards. Much of our journey together has been one of learning, on an individual and shared basis. We learned that our lives before transplant were very similiar in that our cognitive (mental) ability was challenged. We learned that the experience of receiving a donor liver impacted us much more than we could have ever imagined. Last we discovered that we have a lot to learn.

Our hopes are to use this site as a method to increase knowledge in the need for organ donor awareness and as a place that both donor families and transplantees can share their own feelings, concerns and post questions or perhaps give answers.

Keep your spirits high...robin