Thanksgiving Liver

Where does time go?...by deb

2010-07-30T13:06:00.003-05:00

Isn't that a grand question! When we started this blogspot it was intended to promote organ donation, honor our liver donors and help anyone along the way who was facing health issues with their liver being the primary concern. Somewhere along the way life happens and people get busy, sorry to say but sometimes we think we're too busy to keep all the comitments we have choosen to honor. One commitment we can not afford to let go is the comitment to the upkeep of our transplants. Day in day out 24/7, both Robin and I as well as every other transplant patient take medication every 12 hours. How on earth could we if we even wanted, forget those brave and generous souls who gave us life thru their choice to become an organ donor. My apoligies to anyone who has wanted to hear more from Robin and myself here on our blog..we're both doing rather well all things considered between daily life, family, job responsibilities and a multitude of other distractions....we're either busy or tired. LOL
We are walking in the 1st ever Liver Life Walk in Arkansas - Oct 2nd, 2010...it's at 9:30am at the Big Dam Bridge in Little Rock. It's time to form teams and rasie funds for the American Liver Foundation to help in the war on Liver Disease! You can find out more by going to the ALF website and 'find a walk'.
Robin has really done a tremendous job as Chair of the walk! I've tried to help as much as possible from the geographical distance of North West Arkansas, but I give her all the credit for the walk. If you're in a position to help in any way, walk, donate or email one of us to see what needs doing. Please show Robin how appreciated she is for her efforts.
OK, I wish everyone well, wish for more time and energy to post more often...until next time...
Be~Positive,
deb

Holidays......by deb

2009-12-19T13:54:00.002-06:00

Hello to anyone reading this blog,
Time has flown this year and it seems Robin & I have been so busy that it appears we've either lost interest or bought the farm. No so, we are in the prelim stages of working on a Walk for Life with a wonderful group of folks. Robin's our 'chairman', so be thinking of her this coming year as she trys to keep up with her usual duties and the responsibilities of the walk.

Just wanted to drop by and wish everyone a Very Merry Christmas & Happy New Year!

be~positive, deb

Is it Fall is Raining? or Rain is Falling?........by deb

2009-10-11T14:34:00.002-05:00

Which ever the case, how ever your own personal optimisum sees it, this has been a very damp past several weeks if not months here in Arkansas. And I for one am viewing it as just maybe Ma Nature will run slick outta moisture before it's cold enough to snow and we'll be blessed with a dry winter. IE: No snow or ice like last year.

Robin and I had a brief visit on Oct 2nd and 3rd, under the fantastic excuse of meeting with several other folks & a rep from the ALF to do our best to see that there's a Walk for Life in Arkansas possibly in 2010. We met some super people & came away quite hopeful, still a lot of fine tuning and prep work to see it thru.

This weekend Robin's off in flight to a HepC meeting with one of her many other buds. I hope her endurance holds so she can fully enjoy the weekend with all the activities that were planned.

I just dropped by our old forum and was amazed at the low activity level there. However, reading back over our old posts as well as the postings of others brings back the memories of the beginnings of life with a new organ aka Liver. It was and is uphoric at times even now. Probably brought on more by having my 4th anniversary of transplant coming up. I see my transplant team for my 4th annual checkup next month! Right now I'm going thru all those "annual tests/exams" & no matter how well one feels, it still leaves me holding my breath to this day as if waiting on the shoe to drop!

Too, the anniversary always manifests the longing to meet my donor family. I've typed in every imaginable search option I can think of to find an article about my heros who so unselfishly gave life back to myself and probably several others on November 23rd, 2005. It's a longing that will never leave my thought process. So, to anyone out there who has even so much as signed their donor card "Thank You", it's truely an inspiring act beyond words.

Be~Poaitive, deb

More Pix..by Deb

2009-08-07T16:40:00.005-05:00

Deb L., Robin R. 8/2/09

Robin L., Deb R. 8/1/09

*note Robin's Green Ribbon
Donor Angel to her Right

Be~Positive, deb

Therapy.....by deb

2009-08-07T16:18:00.004-05:00

Above is a pix of Robin with her New~Do! It

looks Great on her!

Robin & I had a great visit the first weekend of August. Lots of fun grilling, talking, going out to eat, shopping that was more walking than shopping, I got to hang out with her 2 of her grand daughters. That was fun! Robin got a new fantastic hair cut!!

Here we are prehaircut:

Be nice, I'd been driving all day my hair was pooped! LOL

Be~Positive, deb

In the Good Old Summer Time..by deb

2009-07-25T16:16:00.002-05:00

Robin & I have a goal to get together each year at least once in the Summer. This spring we did have a chance to have a quick 'coffee' when my husband had a doctor appt in Little Rock. But, this weekend July 31st we have a visit planned! We'll have Friday mid-day till Sunday morning to see just how much we can get into. Although some of our best time is spent just sitting and talking. Transplants alone brought us together, but our friendship has grown into that of two women with so much more in common. Robin's friendship is in a round about way yet another gift my donor gave me, yet another gift to give Thanks to my donor and my donor's family. One or both of us will hopefully be posting about our weekend.

An update on our friend in NE Arkansas who had his transplant around Easter '09, he could possibly be facing a 2nd transplant due to complications. Robin and I did our best to help them prepare for his first transplant, funny how life works. Should either Robin or I ever find ourselves facing a 2nd transplant I suppose we'll be turning to he and his wife for guidance?
However, it would be much better if none of the 3 of us have to go thru a 2nd transplant. My thoughts and Prayers are with our friend and his family. They have really had a lot to endure thus far.

So, everyone who might still be keeping up with this blog, do 'Take Care' & remember what ever life throws at you...

Be~Positive, deb

Thoughts......by deb

2009-06-07T15:55:00.003-05:00

Hi.
I'm not really sure why or where I'm going with this post but, felt this most well intended site needed some activity.

Robin & I are still tracking right along with our individual 'life issues', some days are better than others, some well they're down right aggravating.

My husband's health is improving and he's pretty much back to as normal of an activity range as he'd be expected to be.

Robin & I have e-friends in the NE part of Arkansas and the husband finally got his new liver around Easter. Pretty cool Holiday to get a 2nd shot at life! We hear from them thru Caringbridge & he's doing very well after a rough start to his life w/ a new liver. They know who they are, so "HI" & Hope all continues to go well.

When I hear news from them it really takes me back to when I first had my transplant & the new found excitement & appreciation for life that goes with it. Not that as we age with our new livers we are any less appreciative, just that we've learned it's not all rosey sunshine.

Their excitement reminds me to step back from my daily life and recall those first few months post transplant, rediscover the excitement I had for life after my gift of life. Sometimes we get so busy that we forget, if it were not for our 'gift' we'd not be here to be too busy. Still, even with everything going on, not a day passes that my donor isn't thought of. I attended a wedding last night & there I thought of my donor, did he/she ever have a wedding or miss that chance? In ways my donor is a family member that I've lost, but I don't know how to morn for them or what to wish they were here to see & enjoy.

I do so wish I could know more about my donor, it's one of the most frustrating things I've dealt with, the vacant place in my heart that is there with feelings, but not decorated with knowledge of my donor.

SO, I'll close on that, still not knowing where or what I intended to say other than just to say, "Robin & I are fine as life allows". We are hoping to get together this summer for a nice long sit down visit for a couple days. Wish us Luck!

B~positive, deb

A Bit of Honesty

2009-03-27T15:29:00.002-05:00

I had a bit of "guilting" by people I know who follow this blog about dropping off the face of the earth but I had some personal "business" to tend to. Now with the benefit of Lexapro (an antidepressant) I am past the tears and trying to find my way "home".

My relationship of 18+ years crumbled. It came as a shock as I thought he was the one and never dreamed that I'd be living in a rental house without furniture other than a chair my daughter loaned me and a bed my mother loaned my daughter. How's that for funny? My youngest grand was very concerned that MeMaw didn't have furniture or even food in her house but she loved the idea that we would "camp" when she visited.

But, I do have all three of my cats and they have adjusted wonderfully. The one I worried about has turned out the most easily adjusted and enjoys lap sitting and attention from your's truly which makes me proud as a peacock.

I am doing treatment for the Hepatitis C...have done shot 3 this week but have had to discontinue the ribavirin as my kidneys are not doing very well at this time. They have decreased my antirejection meds lower than they were before I started rejecting in hopes that my renal function would improve...and it hasn't. Each wednesday when I inject my interferon, I think...OUCH my credit card can't keep handling this $1100 co-pay and then I enjoy my days of shakes, fever and aches. But, it is my POSITIVE in life.

Please keep our Deb in your thoughts as she is having some major life problems with her husband's health right now. I send my love to her as she has a lot on her shoulders.

Thanks for you patience with me and Keep Your Spirits High...robin

Spring & New beginnings........

2009-03-21T11:50:00.002-05:00

Spring has finally arrived, with spring typically comes new things, baby animals, trees budding new leaves, flowers erupt from the earth...rain falls instead of snow..and life continues it's circle.

This winter we've seen great trees fall from the load of heavy ice, yet what remains of them buds out in hopes of spring, new beginnings. I see a bit of Robin & I in these strong old trees that refuse to let what comes at them get the better of them.

Much like the passing of the seasons, both Robin & I are facing spring with our lives changing. We take comfort that we have our firendship, our kindred spirits bound both by sharing the journey of a liver transplant & true friendship. It matters not how our individual lives change, our friendship remains one constant we know in our hearts we will always have.

To the followers of this blog, that are missing Robin's blogs..hang in there. I'll post occasionally in a pale attempt to keep this going in hopes that Robin will soon returrn with new found wisdom.

Be~Positive, deb

Missing Robin......by Deb

2009-03-07T17:08:00.002-06:00

Upon my initial word from Robin that she had matters to deal with outside of the blog & our girl time, OK she does have a life beyond all of us & granted it's hard to share her, but for a time we will do just that. Still, it was a blow to my system. Since being in touch with her, she does have a lot to deal with. I know this woman & have no doubt she will conqure what life has dealt her & be a wiser stronger lady for it. Don't give up, she'll be back most likely in due time, brighter and bolder than before. Be patient with her, Pray for her & Love her for the wonderful spirit she is. We Love you Robin!

Will not be posting---by robin

2009-03-05T11:03:00.002-06:00

Due to circumstances, not necessarily in my control, I will not be blogging. Thank you to those who have followed and responded to posts. Wishing you all the best and as I like to say, Keep your spirits high...robin

Tired and stupid---by robin

2009-03-02T01:15:00.003-06:00

Don't know where my head is, perhaps I'm in the midst of a big pity party but I'm tired and frustrated and I'm fed up with being tired, frustrated and fed up.

I am tired of fighting with insurance. I'm tired of being denied drugs to treat my hepatitis that I need in order to prevent the need for a second liver transplant in a few years. I'm tired of this stupid economy and I'm just tired of it all.

I've had the suggestion to hire an attorney and force the insurance company to approve the meds, but I'm thinking that somewhere in my life, this is a Karma payback. So, I'll just sign off today as being tired and feeling stupid.

Keep your spirits high...robin

I'm Talking 'Bout VEGAS---by robin

2009-02-27T15:59:00.002-06:00

Whew...now that Deb popped in with a report on her, won't call him her better half so how about her other half, AKA, hubby (I know there were way too many commas there but I kind of like adding them since I am really poor at punctuation), I will take a pass on dogging the medical community for a spell.

Really, I just want to brag a bit that I am heading to VEGAS in the morning. Should be a nice few days with scant worries, other than how my three feline children will be managing without my lap, lovin' and attention. Now don't anyone get worried that the cat children will be neglected as they will be attended to by their human Aunt (my daughter) while I am being a NASCAR redneck in VEGAS. I'll also make the mandatory calls home to talk to the cat children while away and somewhere in my heart I know that I will miss them more than they will miss me.

So, while I am enjoying the thrill of race cars zooming around in a circle, counter clockwise for hours and hours with the occasional spin out to toss an added thrill to the mix (in VEGAS) I will promise to think about each and everyone who isn't there enjoying the redneck excitement of NASCAR with me.

Keep your spirits high, while I'm in VEGAS...robin
sorry, I got carried away with the VEGAS thingy...oh drat, I did it again

What Robin Said........by Deb

2009-02-26T20:08:00.005-06:00

Yes, what Robin said & more in regard to my hubby,
What was to be the best possible procedure to remove a prostate, in one day out the next, quick and near painless recovery has turned into 4 days & counting. Friday will be day 5 and I am doubtful he will come home till the weekend at best. The actual surgery supposedly went off with out a hitch & as far as the insecions etc he's not in any pain at all.
As Robin mentioned, the oxygen saturation was his first problem coupled with the hospital not having reserved a room for a scheduled surgery patient we found ourselves in IUC, there he laid & I sat. Yesterday evening we were finally placed on the urology floor, but not before his lack of necessary activity caused him to develope penumonia..that was addressed with increased antibiotics, oxygen, breathing treatments..so we felt things would get better quickly now. But upon arrival (after yet another 2 hour drive) this morning his abdomen was swollen, his internal plumbing isn't working. A KUB X-ray was done this afternoon {results from Dr should be ready in the morning}~hope to catch him! Also hubby now has a tube passed via his nose to the stomach to suction the fluids causing the swelling. Maybe after a night of that, hopeful for a good KUB result he can come home sooner than we think...it's a wait & see world of unknowns for us at this time, don't know what might go wrong next or when he can be discharged??? But as far as we know from all he's had done & his pathology report he is cancer free & we will work through the rest one step/day at a time, find the laughter again & might even talk more about his prostate than my liver for a good long while now.
Be~Positive, Deb

It's Always Something---by robin

2009-02-25T16:01:00.003-06:00

Thought I'd be brief but wanted to post a line updating on Deb's hubby and his post surgical experience. It appears that pharmacies aren't the only "problem" and that hospitals tend to move at their own rate of speed.

Jerry had a bit of trouble keeping his oxygen saturation up after surgery so he went to ICU after recovery. Seems if you are not comatose, ICU doesn't know how to care for a patient that needs a bit of extra observation but isn't critical. So, Jerry sits there without staff getting him up and moving. Deb sits there without receiving any aftercare instructions for when they get discharged. She is worn out and frustrated as (I am sure) Jerry is.

So, I'm asking y'all to keep them both in your thoughts for the next few days/weeks or whatever this turns in to. I don't want to overstep my "friendship" in discussing their medical "stuff" but wanted to share...It's Always Something.

Keep your spirits high...robin

This and That---by robin

2009-02-23T11:45:00.002-06:00

It's Monday morning and I just spent the week-end with the grands...was good as I got to see four of the five girls. Got my 12 boxes of Girl Scout cookies (two grands selling cookies) and popped them all in the freezer for a later time when I have a sweet attack.

Got another denial of benefits for Pegasys and Ribavirin on Friday so I placed another call to the APN and pharmacy. What is this...worked it out to get the rescue meds so let's deny the treatment drugs, AGAIN? Now it is a challenge to determine which of us has more determination...the drug company to deny benefits or me to fight them.

Deb's hubby is in surgery, as I write this, so they are in my thoughts. I've already received a brief note from her and I expect to get an updated version once he is in recovery. Directing all my positive energy and thoughts towards the surgeon's skill with the laser and Jerry's healing.

Keep your spirits high...robin

Got It Figured Out...Again---by robin

2009-02-19T10:51:00.002-06:00

Talked with the Advance Practice Nurse and it appears the legal loop-hole (AKA more wasteful healthcare dollars spent) has been found. I can get my "rescue" meds through my physician's office and insurance will cover it. Now mind you, being an RN, I am fully capable of administering my own injections especially since I will be injecting Interferon at home and I self-injected insulin after my transplant. But for some reason, it is a better option for my insurance company to have me go to the doctor to receive the very same injections that I can give myself...sooooo OK, I'm ready to play.

Now we are back at step one and that is getting approval for Interferon and Ribavirin so my pharmacist can get the prescription filled and I can start treatment. Can we have a small cheer for the little man in this fight...Here's one for US.

Keep your spirits high...robin

I "GET" it---by robin

2009-02-17T11:57:00.003-06:00

I've almost accepted the idea that since we are considered middle class, there is no help available for treatment medications for hepatitis. We have checked into drug assistance programs and changing insurance but I'm limited in options since I'm on disability. What's left is to challenge the insurance companies with "reason".

So, what is the "reason" I talk about? Doctors say I will have about 10 years on this liver without treatment. That means that in a period of 6-7 years, I'll start having problems and that means my health care dollars will increase significantly. Then by year 10, insurance will be faced with paying for a second transplant.

Does any of this make sense? Not to me. Why is it when two people get an education and work to provide for a comfortable retirement they can be wiped out by a medical crisis. I "GET" it now. Since hepatitis is slow moving, we do have time to try to figure out alternatives but what if this was cancer...where you have no options. We would be forced to completly wipe out everything we worked for...give up our house and cars to pay for medications. This I have a problem with.

I've read all comments and do look into options you pose. I appreciate you taking the time to post and I feel it's a matter of time and things come together. I do believe that everything works for the best...maybe not what we want but in the end, it's the best.

So...keep your spirits high...robin

Treatment on Hold---by robin

2009-02-13T11:34:00.006-06:00

This is frustrating but it's just a part of life, I suppose. Treatment is now on hold. First off, my co-pay for just the interferon and ribavirin exceeds $1000 a month. Then, insurance pays nothing towards the neupogen, which everyone needs and that is between $2000 and $3000 a month, per my pharmacist.

Needless to say, my prescriptions didn't get picked up. Now, we will have to do some research to determine if there is any way we can qualify for discounted medications through the drug companies.

The good news is that when I went to see the Adavance Practice Nurse to get my prescripitions, I found out the results of my liver biopsy...Stage 1, Grade 2. So, I do have time to search out means to treat but it's still frustrating.

Keep your spirits high...robin

Checking In.......by Deb

2009-02-08T20:40:00.003-06:00

Even in the lull of time between year end holidays & spring's arrival time to do at least a few things I want to evades me. Yes, going without power for almost a week was a bummer, but others went longer and as I write some in my area are still sitting in hopeful, frustrating darkness. The time without electricity could have been better if our generator had been totally committed to the internet. Our part of Ark looks as though a tornado has gone across it as far and wide as the eye can see. Trees are splintered off or uprooted, broken power poles aren't uncommon to see, some people are working to clean their yards, others as I drive along seem to be just standing in the midst surveying just where to start. My own emotions swing from amazement to devistation at some of the old beautiful trees stripped of their majesty.

My job is demanding more time than I had originally intended, but I'm Thankful for the opportunity & health to have a job.

My husband & I did manage to spend time with our sons, daughter in law and a dear girl friend of one son...this weekend. In celebration of hubby & the girl friend's birthdays 7th/12th of Feb.
It was a pleasant distraction from daily life, which seems to continue to become more & more complicated.

I'm doing well other than occasional tiredness, still wondering is it my body or brain that's more tired?
My husband & I are in the process of seeing doctors & deciding on treatment options for him. He was diagnosed with prostate cancer recently. It will be a turning of tables from when he was my caregiver just 3 short years ago during my pre/post transplant. I hope I do as great as he did in my caregiving. He was so patient, but I was a good patient. LOL Guys aren't always the best patients & I'm not real blessed with a lot of patience. Age has improved that some. Time will tell.
I miss having time online to visit with my pals,,,and my Dear Robin WOW hasn't she done great here with the blog? Gotta commend Robin, even in the face of her hepC treatments, rejection issues she still finds time to blog, be a wonderful Memaw, wife, cat parent..& then some.
It's really going to be great to get together again in Nashville for the Liver Walk in April. So, very briefly here was I, with a touch of NW Arkansas news.

Be~positiv, deb

I'm Starting Treatment---by robin

2009-02-05T21:52:00.002-06:00

It's official, I go in Monday to start the paperwork for insurance approval to start treatment for Hepatitis C. Since the hubby and I are heading out to Las Vegas for a visit with the eldest son and daughter in law, I am electing to post-pone my first injection until March.

I may also be changing my antirejection meds because my kidneys are not pleased that they increased the dose of Gengraf. This will be the third change in the medication (and there aren't that many to chose from) but that's OK. It's all about keeping everyone happy, right? We want our liver happy and we want our kidneys happy so medications can be tweaked to do so.

Keep your spirits high...robin

Can I Hear A Big WhoooHoooo?---by robin

2009-02-03T18:06:00.003-06:00

I just received a call from my transplant coordinator and a fax with orders for labs to be done on Thursday...complete with a PCR. Treatment for Hepatitis C may NOT be out of the question. So, I am very excited. That is what the big WhoooHoooo in the Title is for.

To those who have attempted treatment, that may sound somewhat bizarre (to be excited) as it is essentially signing up for "flu" for the year. But for someone who has lived with this disease and came close to dying with it, that is one of the most encouraging phone calls I've had. I'll happily inject my body with Interferon and have my twice daily ribavirin, plus whatever rescue drugs that are needed to become an official dragon-slayer.

Now I want to salute my partner in blogging (who was without electricity for a week due to the ice storms in Arkansas) by telling a story on her. When Deb and I first "connected" and I was talking about treatment, I received a very sweet and supportive e-mail from her and she was asking about the drug, InterFEARon. I totally love that spelling of the drug because I know that the dragon virus "will shudder" in fear with every injection.

So, to end this post I will add...
Keep your spirits high...robin

Last Frustrating Day of January---by robin

2009-01-31T13:11:00.003-06:00

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

Another biopsy---by robin

2009-01-29T13:22:00.002-06:00

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

We (My liver and I) are getting along better---by robin

2009-01-27T15:44:00.003-06:00

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.

One in Ten VS One in Twelve---by robin

2009-01-24T13:04:00.002-06:00

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

We Met Our Goal---by robin

2009-01-22T21:23:00.002-06:00

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

TeamThanksgiving ALF Walk---by robin

2009-01-19T12:51:00.002-06:00

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

It's Official...I'm Rejecting---by robin

2009-01-16T19:07:00.002-06:00

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

Transplant Milestones (posted by UNOS)

2009-01-13T11:10:00.009-06:00

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

Organ Donation---by robin

2009-01-11T11:46:00.005-06:00

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

Terry Cullins almost got his liver---by robin

2009-01-09T07:25:00.005-06:00

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.

First Wednesday of the Year---by Robin

2009-01-07T16:05:00.003-06:00

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

2009 already?......by Deb

2009-01-03T15:57:00.002-06:00

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

Happy 2009---by Robin

2009-01-01T18:53:00.003-06:00

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

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

2008-12-26T11:51:00.003-06:00

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

2008-12-24T13:16:00.002-06:00

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

2008-12-19T11:10:00.002-06:00

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

2008-12-15T15:14:00.002-06:00

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

2008-12-15T11:12:00.008-06:00

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

2008-12-12T18:13:00.006-06:00

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

2008-12-10T11:28:00.003-06:00

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

2008-12-08T10:18:00.007-06:00

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

2008-12-02T18:20:00.005-06:00

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

2008-12-01T21:05:00.002-06:00

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

2008-11-28T08:25:00.013-06:00

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

2008-11-26T15:09:00.003-06:00

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

2008-11-24T13:57:00.003-06:00

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

2008-11-21T14:40:00.003-06:00

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

2008-11-19T12:04:00.005-06:00

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

2008-11-18T15:46:00.002-06:00

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

2008-11-17T10:37:00.001-06:00

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

2008-11-15T14:22:00.002-06:00

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

2008-11-14T12:18:00.006-06:00

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

2008-11-12T12:16:00.006-06:00

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

2008-11-10T19:58:00.008-06:00

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

2008-11-10T13:06:00.003-06:00

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

2008-11-08T13:47:00.006-06:00

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

2008-11-07T14:57:00.005-06:00

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

2008-11-06T13:40:00.006-06:00

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

2008-11-05T17:18:00.003-06:00

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

2008-11-04T16:27:00.005-06:00

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

2008-11-04T15:51:00.005-06:00

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

2008-11-03T12:41:00.001-06:00

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

2008-11-03T11:56:00.001-06:00

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

2008-11-02T13:03:00.001-06:00