Holidays......by deb

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

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

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

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

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

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

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........

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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)

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

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

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

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

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

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