2008 was quite a year!

I am certainly looking forward to a New Year of my new liver and I getting to know each other settling in so we can have years of fun and a long, healthy life together.....


Thank you all for listening to my ramblings, fears, stressing, obsessing and triumphs as I struggled through one amazing year of my life.

Thank you for all the support, cheering me on and most of all listening to me.

I have learned so much, so very much. From my family, friends, (online and off), my cruise buddies, my support group, my Dr's and health care providers and other cirrhosis patients and caregivers.

I KNOW there is a reason that I was chosen, if you will, to have this disease, to live with it, to deal with it, to learn about it and to come out the other side with a successful transplant, to learn how to live with all the things that come with that.

I have learned a lot about myself, about compassion of others, whatever they are dealing with, about patience with people and life in general. I have learned to take responsibility and take charge of the things you can, learn as much as you can, ask lots of questions, sort out the answers, do what you can and then enjoy everything you can while you wait..... because in reality you don't know what could be just around the corner.

Enjoy the warmth of the sun, the way your dogs run through snow when they live in the desert, Enjoy watching people open up about things they aren't really proud of and leave them feeling that you care about them even more for sharing because we don't judge them for past mistakes. We all have them. Watching your son struggle to become a man and your husband take care of you in a way he never thought he would have to, and smiling the whole way..........

No matter what my health brings in the future......good or not so good, I will handle it as best I know how and continue to try and reach others about the facts about what liver disease can mean to their lives and how to avoid it if it involves making a choice. Particularly to women who drink.........How I wish I had listened earlier when I had a choice before cirrhosis set in. Although I accept the journey I have been on, it certainly isn't one I wish for anyone....... A few vodka tonics less or skipped that bottle of wine...............well, I might not be telling the story I have been telling you all year or will be sharing with you shortly...

I will always support and share with fellow liver patients who are living with cirrhosis and have all the questions that I had about what is next??????

and finally I will fight for a better way for this country to deal with organ donation and allocation so there are enough organs available for people that need them. Be it a Liver, a Kidney, Lungs, Heart, Tissues for Burn Victims and Corneas so people can have sight. There are several options that are good ideas and it will take a lot to change the current M.O. But there has to be a better way.....Until then PLEASE Don't take your organs with you, HEAVEN KNOWS WE NEED THEM HERE.... and make sure that after you sign up, you tell your loved ones of your wishes.


In Fact........This is part of a document that you should read.....I had read these facts before but it hit me harder how lucky I was to get ONE of these organs....The odds were totally against me and everyone else waiting.....

A national crisis exists because of the critical demand for organ donations that is currently needed for over 100,000 gravely ill individuals on the national waiting list. While that number grows daily, a person on that list, or one who was removed because he/she was too sick dies every hour. In addition, over 2.5 million Americans die annually, but only a total of 14,400 living and deceased persons donated organs last year. ( From UNOS Facts 2008 )

Then when it crossed my mind more than once that I could be waiting for a kidney soon as well. Let's just say I wasn't very excited at the prospect. Here is a link to the entire Assembly Bill, The Organ Donation Enhancement Act.

I expect, hope and pray that the years to come will be wonderful for all of us! There is a lot to do, a lot of fun to have, love to share and people to share it with....

Stay Healthy and Don't forget to LOVE YOUR LIVER !!!!!

How Obama rewrote the book. Time magazine

...........................................







No matter who you voted for the magnitude of how this changes everything can not be overlooked. Here is a link to the full article.


Wednesday, Nov. 05, 2008
How Obama Rewrote the Book
By Nancy Gibbs

Some princes are born in palaces. Some are born in mangers. But a few are born in the imagination, out of scraps of history and hope. Barack Obama never talks about how people see him: I'm not the one making history, he said every chance he got. You are. Yet as he looked out Tuesday night through the bulletproof glass, in a park named for a Civil War general, he had to see the truth on people's faces. We are the ones we've been waiting for, he liked to say, but people were waiting for him, waiting for someone to finish what a King began.

"If there is anyone out there who still doubts that America is a place where all things are possible," declared the President-elect, "who still wonders if the dream of our founders is alive in our time, who still questions the power of our democracy, tonight is your answer." (See pictures of Barack Obama's victory celebration in Chicago.)

Barack Hussein Obama did not win because of the color of his skin. Nor did he win in spite of it. He won because at a very dangerous moment in the life of a still young country, more people than have ever spoken before came together to try to save it. And that was a victory all its own.

Remember this day, parents told their children as they took them out of school to go see an African-American candidate make history. An election in one of the world's oldest democracies looked like the kind they hold in brand-new ones, when citizens finally come out and dance, a purple-thumb day, a velvet revolution. A hundred thousand people came out in red states to hear Obama; a hundred fifty thousand turned out in purple ones, even after all this time, when they should have been sick to death of Hope and Change. In Michigan, people put an electric fence around their yard sign to protect it. NASA astronauts on board the International Space Station sent a video message encouraging people to vote; they did, from 200 miles up. A judge in Ohio ruled that homeless people could use a park bench as their address in order to register. A couple flew home from India just to cast their ballots. Obama's Ohio volunteers knocked on a million doors on Monday alone. That night, a Florida official locked himself in the Seminole County election headquarters and slept overnight with the ballots to make sure nothing went wrong with the vote. Early-voting lines in Atlanta were 10 hours long, and still people waited, as though their vote was their most precious and personal possession at a moment when everything else seemed to be losing its value. You heard the same phrases everywhere. First time ever. In my lifetime. Whatever it takes.


Click the link above for the full article................God Bless America

Time to play Catch Up

Hello everyone....Ok, I am ready to play catch up....

It has actually been about 3 weeks since we talked. I think the thing that kind of stopped me in my tracks was that I had several friends who were in trouble medically. I just started getting to me a bit.

A few people in my support group have been going through some very rough times, including both the patients themselves and of course their spouses and families.

We had one person who had been in the hospital for about 5 months fighting for his life pass away. He got so close to being transplanted at one point they had found a liver for him, and as he was being wheeled into surgery his lung collapsed and they had to abort his transplant and put him on a ventilator which he was then on and off until he passed away. I saw him the day before he died. He was about my age.

There is David and his wife Sharon who I have posted about and you have the link to his blog in other posts that I worry about and pray for daily.

My friend Corina and her husband Frank. She had a stroke unexpectedly about 2 months ago and has been in and out of the ER and hospital as she tries to recover from that.

Sweet 6 year old Annika, who I only know from her blog, going in for her 3rd liver transplant last week.

Anyway, you get the idea...............It is of course them and not me who I am concerned about but I think I just felt I wanted to shut down and shut it all out for a bit.

Joe and I have been doing a bunch in the past few weeks though as well and I want to share those things with you too....

Let's start with the escape cruise to Cabo shall we???????

Scripps San Diego Transplant Class

On Wednesday I drove down to San Diego..... I left home at 10:30am for a 2 hour class and got home at 8pm...I only stopped for gas/potty break twice and a 30 minute shopping break at the pottery barn outlet. It was a very long day...It's a 5 hour round trip.

I enjoy the time alone....I always have liked to drive and when I am alone I have lots of time to think, sing to the radio, talk a bit on the phone.......etc.

The class was very good....very different than the class I took at LLU. I find the differences interesting and an opportunity to learn more from different people who are very knowledgeable.

There were 2 classrooms being used at the same time next to each other. One for Kidney Transplants and one for Liver Transplants. During that time the transplant coordinators spoke to us about what transplant entails regarding the organ that you need replacing...The why's, what, when, how, etc ....etc. Very informative.

Some differences between LLU and Scripps. I am not sharing opinions here just facts...

LLU only does whole liver transplants from deceased donors as do the majority of transplant centers.

Scripps does whole liver transplant, and also will split livers from deceased donors. I.E. If a liver were to become available that could be used by a child and and adult....(same blood type, etc) They can use, say, 20% for the child and 80% in the adult. Both grow to full functioning organ within a year and save 2 lives. It can be a longer and more difficult time of recovery for both as the liver has been severed and also has to heal... They do this rarely as the opportunity doesn't always present itself but that is sometimes an option.

They also do a small percentage of living donor transplants.. In kidneys this is common but in liver, not so much.....I am not going to go into detail as I am not very educated about this... I do know that it is a very serious surgery and recovery for BOTH the donor and the recipient. It can be even harder for the donor during recovery. Both need full time caregivers and it goes on and on....Not something I am interested in doing to a loved one even if I did qualify.....

Another thing that is different is that the anti rejection drugs used post transplant and forever...
Scripps tries to use a steroid free approach which helps avoid a lot of the complications that can arise just from the steroids...(I will talk about that later when we get to a *medication talk*)

After our individual classes they opened the dividers between the rooms and a couple of other speakers talked to all of us as these things would effect all of us.

The Social Worker on the support we would need, housing issues, follow up appointments, support group, compliance to appointments, medication, etc. Insurance....

The Pharmacist talked about all the different types of drugs, what they were, how they were used and combined, side effects....THE SIDE EFFECTS!!!!! If anything scares me that is the biggie. It is one thing to think that your organ that controls so much of how your body operates is not functioning well......another to face the traumatic surgery......another to deal emotionally with having your body cut wide open and have another persons organ placed inside your body,.....another to deal with the months of physical recovery and the fact that you will most likely never have the health you once had......BUT...for me the thought of being place on these drugs which YOU HAVE TO TAKE FOREVER......AS LONG AS YOU WOULD LIKE TO KEEP YOUR NEW PRECIOUS ORGAN..... which is a good idea.....but all the things that these drugs that will save your new liver will also CAUSE to happen to you..... (again...when we have the drug talk....) But....of course it is manageable BUT that doesn't mean it doesn't scare me or I have to like it.................................................................................

All in all it was a very informative and well taught class! Kudo's to Scripps and the Transplant Team there.....They did a great job.

As we begin Year #2 in this Journey..........our new beginning at Scripps

I want to write a bit and tell you about our visit to Scripps Green Transplant Center and my feelings about going there.

First of all I want you to know that I was hesitant for a long time to pursue health care outside of Loma Linda with whom I have entrusted all my beliefs, hope, support and extraordinary medical care to.

On some level I felt a sort of waywardness about this. Like I was being unfaithful or something. Like a child venturing into an unknown world. I didn't want the people I trust to feel betrayed. This includes my Doctors, my transplant team, my wonderful friends in my support group and even you, my readers. Odd isn't it? I have spent the last year of my life following their lead and I have learned so very much.

Most of you know that I am also very pro-active in most everything and especially my own health right now. I want to know what ALL my options are. Get different opinions from EXPERIENCED, KNOWLEDGEABLE PEOPLE. Leaders in their field. I need to get a feeling that the general consensus among the experts is that I am doing the best thing for the condition that *I* am in. My body and my situation may be similar to lots of others that are suffering from End Stage Liver Disease but it is uniquely different that anyone elses also.

I have continually had/have an internal battle with Do I keep my God given liver as long as possible and be thankful for the health I do have and wait patiently OR do I do as my mother taught me and that is pursue the thought that *God helps those who help themselves?* and explore ALL my options.

As you can tell I finally chose the later. (Always listen to your mother!) And after discussions with my LLU Dr's, my transplant team, friends, family and extended family the consensus is that we/I should do whatever is necessary to do the best thing to keep me alive! That means getting a new liver, a GOOD liver at a great transplant center with a high level of long term success. And following my instincts.

Joe took the day off from his patients and came with me to meet Dr Hillebrand and some of his staff.

We were more than impressed with our visit. His staff is friendly, helpful, knowledable and respectful. So was he. We really liked Dr H. We spent about an hour together. He went over my medical history with me carefully and we spoke about all the steps that would be needed to be dual listed, how the transplant centers coordinated efforts to reduce duplication of tests and visits along with what would happen when the time for transplant came and follow up.

The next step after meeting him is to meet with the rest of the Transplant Team. The Surgeons, the social worker, and the coordinators which I can do with one more visit which we arranged to do on 9/15. After that my case will go before *the commitee* just like before to decide if I should be placed on thier list. There are more details on all of this early in my blog.

So, we are off to the races!

After my meeting on the 15th I will continue my regular care, Dr appointments, Labs and other testing at Loma Linda and we go back to waiting for the call.

Right now, I was informed that I may be the *highest B blood type* they have on the list. If not I am close. So, in reality by dual listing I will most likely have my transplant in San Diego as that is the way the #'s are in my favor.

One thing that I want to share with those of you who are suffering from any kind of disease or are the caretaker of someone who is....

#1. Find a really good or great Doctor that has experience, is well respected in his/her field, that will answer your questions and lay out all your options for you. YOU CAN FIND ONE.... They are out there.

I did spend 2-3 years running around in circles trying to get help from Dr's who didn't know what to do with me except pass me around. 2 weeks before I ended up in the hospital with a MELD of 37 and my Doctors saying I might not make it, I was in my *regular* Dr's office BEGGING for him to send me SOMEWHERE, ANYWHERE that I could get help! I looked like death warmed over, bright yellow, my body totally swollen all over, legs as big as tree trunks, feverish, I had been vomiting, was terribly constipated, lost 30# because I couldn't eat, crying for help, all kinds of nasty things, and he told me once again to get blood drawn, and come back in 3 weeks... I was almost dead in 3 weeks. I might not be waiting for a liver transplant if I had found a good Doctor earlier. (the only reason I ended up in Loma Linda was I told Joe I needed to go to the emergency room and to take me directly to LLU....)

SO FIND A GOOD DOCTOR....then listen to and trust them.

#2 Educate yourself. Learn. Find GOOD information about what your body is doing and what you can do to help yourself. Your Doctor can be good but they are also VERY BUSY. There is no way you will get all your information just from your Dr.

It is your responsibility to learn about your disease, your symptoms, what is *normal*, what to watch out for, and what the future holds. You can learn a lot from people who have the same thing. You can find them online and in support groups. I have learned invaluable information and gained alot of hope from my support groups.

#3 Write things down. Keep a health journal. If you can't, have a loved one keep track of things. Your weight, your drugs, your diet, blood pressure, appointments, attitude. Anything that is relative. Show it to your Dr. Write down your questions. Go to your Dr appt's prepared.

#4 Let your Dr's and medical staff know when something isn't right. Now that doesn't mean they need to know you stubbed your toe but if something is really a problem, DON'T WAIT UNTIL YOUR NEXT APPOINTMENT to let them know. Make a phone call and tell them. Let them decide if it is important.

#5. Be proactive. It's your life. You have people who love you and care about you. You need to care about you. Share with them, spend time with them and yourself. Enjoy life, especially the little things. You may not be able to do all the things you once did so enjoy OTHER things...
go outside, people watch, pet your dog or kitty, hug your kids, take up a new hobby, be nice to the people around you....

Those are my thoughts tonight as we start year 2 in this adventure...Gosh, I am ready to go through the next step of this but I am faithful that I am doing what I can and I do have patience even though it may not sound like it.

Good Night !!!! God Bless.......

My First Appointment with Scripps and Dr Hillebrand Tomorrow

As you can all tell by my recent posts, I have really been focusing more and getting my Transplant sooner than later if possible. In all the things I have read, patients both pre and post transplant, My medical team at Loma Linda and the wonderful transplant coordinators, Judith at LLU and Thomas at Scripps along with Dr Darling and Joe of course, we are ready to start our next step of my journey by having our first of many appointments at Scripps Green as I attempt to be listed to be transplanted there in addition to Loma Linda.

I want to talk to you about what I am doing here..... You have the RIGHT to be what they call *DUAL LISTED*. Actually, you could be listed in as many *AREAS* as you like and are willing to go through the process to be listed at.

Your Transplant Team will advise you of this right. In fact you sign a piece of paper acknowledging that they have advised you of this right. (You sign LOTS of papers...!)

But it is important to know how the system works.

UNOS, who is the United Network of Organ Sharing Organization, ( I highly suggest your visit their site), is the organization in charge of Organ Allocation. Here is a brief description of what they do.

*The UNOS Organ Center is available 24 hours a day, every day of the year, to facilitate organ sharing among transplant centers, organ procurement organizations and histocompatibility laboratories across the U.S. The primary functions of the Organ Center are to:

• assist in placing donated organs for transplantation
• assist in gathering donor information and running the donor/recipient computer matching process
• assist with transportation of organs and tissues for the purposes of transplantation
• act as a resource to the transplant community regarding organ-sharing policies*

Basically, it works like this.

The country is divided into regions. We are in region 5. Region 5 consists of Arizona, California, Nevada, New Mexico and Utah. Now within region 5 there are smaller more localized groupings. We at Loma Linda are in a group with other major transplant centers. Cedar Sinai, USC and UCLA are the big 4 in this area. San Diego has it's own area with 2 major centers and Northern Ca has 2 as well including, Stanford, UC San Francisco, UC Davis and California Pacific in San Francisco.

In order to better allocate and distribute viable organs the organs are best placed locally (they don't have a long shelf life...... :-) (I am still SO SURPRISED when people ask me when my transplant is SCHEDULED????? Which they often do!)

So, if your insurance allows it...which is a HUGE thing, or if you can afford the transplant yourself and if the Transplant Center agrees to have you as a patient and list with their facility, You have the right to be listed in any area you feel you would like to be transplanted at.

Now, not all transplant centers are created equally and I am not going to get into that here but do your homework as you should with any major health issue you may be facing.

I have and these are the best choices for ME..... I will leave it at that.

So, tomorrow, Joe and I head down to meet with my new hepatologist, Dr Hillebrand. He has been highly recommended to me by some of his former patients including Don, who just had his 10 year anniversary with his new liver, he is the head of our LLU support group along with his wife, Betty, who runs the caregiver support group. He was/is also Dr Darlings Doctor who is a 3 time liver transplant patient, who I wrote about in a previous post.

As you may imagine I am very excited and a bit nervous about tomorrow. I feel very safe and comfortable at my hospital home of LLU and it is a bit out of my comfort zone to venture out to another. The other reason for my feelings is that I am of course doing this in the hopes of getting my transplant sooner as they don't have as many people waiting with my MELD score and blood type. SO, that could mean that I am on my way........

I haven't mentioned to you all that it has been exactly ONE YEAR since I entered the Emergency Room Doors at LLU and was diagnosed and began this journey. It has been quite a year...I have learned a lot....more on that later.

So, I have my list of questions for Dr H and away we go!

Appt with my hepatologist

WAIT, MAYBE I AM !!!!

I think it is time I update you on my physical condition. Thank all of you who have been checking on me. It really makes me feel good when you ask how I am...


It is such a hard question to answer actually. You might wonder *what in the world can be hard about such a simple question*?

So, someone asks me, "How are you?" They say, "Nancy, you are looking SO GOOD!".

I say, "Thank you, I feel really good!" And that is the truth. I do feel really good relative to how bad I HAVE felt and how good I feel compared to others suffering from Cirrhosis AND compared to how bad I SHOULD be feeling with my MELD scores still so high.

I am experiencing some of the symptoms of Liver Disease although I would consider mine to be mild. And some things happen to my body that I have no idea what the hell is happening to me at the time...

I am experiencing edema, fluid retention in my legs, ankles and feet. So far I have been controlling it with upping my diuretics when needed, really cutting the sodium down (1200-1500mg daily) when it happens, feet up, etc.

Also, I have started to get more signs of encephalopathy. I lose my train of thought, LOTS, find it hard to concentrate and finish tasks..a little more emotional and sensitive, stuff like that.

There is other stuff but I hate to bore you all with it.

That is the truth. I feel good. I feel lucky. I feel happy. I feel loved. I feel content. I feel peaceful. I feel relaxed. I feel blessed.

I FEEL GREAT !!!! ........................considering............................

Considering the fact that my liver is in REALLY BAD SHAPE, according to Dr M. and that looking at all the facts and statistic scares the hell out of me. REALLY, scares the hell out of me.

We had a long talk yesterday at my appt. and I had a lot of questions. Now, I know he is not God and he doesn't have all the answers. But my questions were mostly about "How can my MELD scores still be so high and yet I FEEL so good?????

His answer to me was a bit disheartening.

He said..." I am GLAD you FEEL so good." Enjoy it. But the fact is your MELD is so high because you need a new liver and sooner would be better than later.

He also said my spleen is enlarged and my pancreas has suffered as well.

My meld score has been slowly creeping down...To give you a recap....
When I was in the hospital last Sept it was 37.
It came down to 28 or so about a month later.
It has been creeping down 1 blip at a time sine then to 22 which is where it is now.

That sound good, right????? Well, yes and no...............again ..........confusing........

It may be GOOD in that I may have recovered a couple of cells in my liver but BAD in that if I do need a transplant sooner than later.....numbers like that could keep me from being *sick enough* to get available livers.

See why I feel like I am spinning on a wheel?

It's one thing to say to myself....It isn't up to me anyway so just relax and enjoy the fact that you feel good.

But that may mean that I end up waiting until my kidneys start failing, I fill up with fluids from Ascites, (think edema gone crazy...) I start bleeding internally in spots I shouldn't...etc. etc. It can get very ugly. AND that can happen very fast.

The other thing I say to myself is, Well, Nancy, you DO have some options. I can dual list at other transplant centers. San Diego Scripps is one that doesn't have such a long list of people waiting...

I don't want to get into all the reasons why or why not to dual list but when my Dr suggests off the record that I might want to look into the Mayo Clinic in Jacksonville, Fl...
Well, I get the hint.

I would love to go to Jacksonville....but my insurance is only good in CA....Unless anyone reading would like to sponsor a liver transplant I guess I am staying on the west coast.

We are lucky to have many wonderful transplant centers in CA and I am starting to schedule interviews.

Maybe it is just me but I feel as though my brain is being bombarded with so many different signals and messages that I am on a crazy roller coaster.

Now try and go about normal day to day life....looking on the outside like there is nothing physically wrong with you at all !!!! It is confusing as hell.

I know some of you with *invisible* illnesses know what I am talking about.

I really am NOT trying to throw a pitty party here...But, I need to write and I know you, my friends and family do what to know..

I guess that is enough for tonight. I need to turn in..

Hugs to you all,
Enjoy the summer,
Enjoy each other,
Enjoy the health you have,
Enjoy life!

phone call part 2

Well, we spend the day actually doing different things. I am off all food and liquid after 8:30am which give me a chance to have some breakfast before fasting. Everyone is on edge so we decide that we each need to spend the day doing what we feel we need to. So, I take a shower and clean up. Pack a bag to take tonight if I go and one for Joe to bring later after I am out of ICU. I realize how many things I haven't done. I make an e-mail list which if you got an e-mail from me that day, you are on. If you didn't and want to be added. Just let me know. I make a current phone list of people that will need to be called if it is a go. I call immediate family and friends and tell them what is up. I update our bank account and make sure all the bills are covered and on auto pay for the next month. I take a nap. or try to....... I hug my guys and my dogs and wait. The longer the phone doesn't ring the more I think..."well, if one of the others was getting it she would have called and told me by now" Maybe I am going in.

There are lots and lots of stories of people being called and even brought in and prepped for surgery then sent home because the organ wasn't good enough in the end or some other reason. hence the reason I didn't want to get my hopes up as I didn't FEEL it was my time. Being 3rd was a long shot.

Joe spent the day doing chores around the house and keeping busy. I don't even remember what Joey did.

Okay, to finish the story exactly at 4:30 the phone rang again and I was informed that the liver went to one of the other patients. And that was that!

The next day I kept thinking that I could have been getting a new liver that day and how my life would change. How happy I was for the person that received it and prayed that it had been successful and that God would find MY liver when he wanted me to have it.

So we wait some more........................................................................................................

The Phone Call ....#1

Joe and I were supposed to be attending a Corporate Travel Agent meeting in LA for the weekend which I cancelled on Friday due to a cold I couldn't shake.

Then Saturday morning at 7:30AM my cell phone rings with a 909 Loma Linda number.............................. for some reason I was already awake....unusual for me these days. I looked at it and knew. I answer the phone. A voice on the other end says "Hi, this is Lynn, Judith's assistant from Loma Linda Transplant." and my heart skipped a beat. I took a deep breath and sat down at my desk. Joe was at his across from me and was watching my face intently. Later he told me he couldn't figure out what the call was about.

I talked to her for about 10 minutes, hung up and took a very deep breath and told Joe it was the transplant center and there was a liver match available and I was 3rd on the list for it. There were 2 other people who matched at another transplant center in the LA area that would have first option for it but they wanted me to be on alert......they called it *on hold*. Pack, take care of loose ends and be ready to come to the hospital to be prepped for surgery if either one of the 1st 2 wasn't a good match or their Surgeons didn't want it for their patients for a variety of reasons.

I just looked at him and couldn't move. Neither one of us could. We just looked at each other. I asked him how he felt, he said he didn't know how to feel and neither did I....It was the weirdest feeling. I wasn't excited, wasn't scared.... I was nervous, and anxious. and my first thought was....NOT TODAY!!! I AM NOT READY..... the next thought was SHIT, THEY REALLY WANT TO DO THIS !!!! it just all seemed like a dream. Joey was sleeping in the next room, we woke him up. (how do you tell you son....this could be the day they cut your Mom wide open and see what happens?). He also said he didn't know how to feel....so there we were...early on a Saturday morning wondering what tomorrow would be like.

Lynn had told me that she probably wouldn't know anything until 4:30 that afternoon and to expect to hear from her by then.

So the wait begins.....................................................................................................

Sleep Finally

One of the common symptoms is sever fatigue, insommnia and change of sleep patterns. A lot of patients with cirrhosis have trouble sleeping at night but sleep off and on or all day depending on how sick they are.

Before the hospital visit my head could hardly stay upright at around 4pm. Literally. Very weird and I there was nothing I could do about it but lay down.

Lately and for a long time I have had night sweats and they aren't hormone related except that your liver controls, like a lot of other things, your hormones. That and being on diaretics that keep me constantly peeing wake me up frequently at night.

Well, last night I slept like a baby, no sweats, not to many times on the potty and it was great! Not only that but I slept until 11AM... Oh, JOY! I just felt like my body finally relaxed and said PHEW! I had been running pretty hard the past couple of days...up at 6am, out of the house by 8 and not home until 6 or 7. Those are long days for me right now. So I enjoyed the catch up.

Is anyone else out there keeping a blog? I have some questions for you if you are.

Thank you guys for all the great comments and congratulations! Yes, you can congratulate me now.....LOL

Then until Now

After Christmas we all went back to our various corners and we spent a quiet New Years at home this year. The last several years we have made a point to do something special and really celebrate but this year we decided on a quiet one at home.

I have had more Dr's visits including one to the big guy at the transplant center, Dr Mendler. He is my lead Dr in all of this and I haven't seen him since my first appointment and the transplant center a couple of months ago. Basically he told me that I will be listed as soon as he gets clearance from the heart institute. I was under the impression that my case would have to go back before the committee but he said, no. I was ready to be listed as soon as next week if he gets the OK.

Well, Joe was with me for this appointment and we were both excited and apprehensive all at the same time...Let's just say the butterflies came out to say hello.

Dr Mendler is a very quiet Dr. He is very thoughtful, analytical and doesn't talk much. You can tell there is way to much going on in his brain. I have a lot of trust in him and like him you just need to be ready with your questions as he is very busy. Like a lot of specialists he speaks his own language and you need to know some of it to communicate and ask the right things.

He seems pleased with my health otherwise. The cardiac issue seems to be whether or not my heart can withstand the grueling surgery. Some previous stress tests that they put it under seem to still indicate some questions in that regard.

The other issues that are common for cirrhosis patients are:

Ascites: fluid in the abdomen which can get huge like a pregnant belly (seriously...belly button pops out and everything) and would have to be drained.

Encephalopathy: where the ammonia builds up inside and causes dementia of various degrees from mild confusion to convulsions and comma. Everytime I can't remember where I put my keys I freak a bit.

Varicies: enlarged veins in the throat area that can cause acute and deadly bleeding if ruptured

Kidney Failure: we won't even go there............

Loss of appetite, weight loss and mal nutrition. Doing OK there...in fact, note to self, start watching the ice cream intake!

Those are areas that we are watching for very closely and so far so good. I am on medications to help prevent them but it can get past the point of the meds not stopping what the non-functioning liver can do.

THE GOOD NEWS IS:

Dr Mendler said that once I am listed because of my blood type, body size and my high MELD score...(still 25) that he anticipates a new liver could come my way within 2-3 months. !!!!

Now, that is, if one presents itself and of course no one has control over that. But they are transplanting my blood type at Loma Linda in the mid 20's. (Each transplant center differs depending on how many are listed with different melds and blood type)

BUT, OMG!!!!! Hence the butterflies appearing.....scary and exciting. I didn't know whether to run or jump up and down!

I go see the social worker tomorrow and the cardiologist on Tuesday.

Side note:

People keep asking me when my transplant is *SCHEDULED* Have they NOT watched ER????? and seen the helicopter land and Dr Hotstuff jump out with the igloo with the organ in it??????? Another one that hits me funny everytime I hear it......

meeting with the surgeon..................

Yesterday, Joe and I were on the road to the hospital by 7am and got home about 6pm. Long day of appt's and we had some company last night. They went well but I am catching a cold and the day made me tired. Anyway, over all it was a good and interesting day.

We had an appt with Dr Franco, one of 4 surgeons that make up the liver transplant surgery team at Loma Linda. We barely caught him as he was being called to another transplant. 3rd one in 2 days. Joe and I had already had a discussion wondering, since it is such a long and complicated surgery, how much of it the surgeon actually does. Do they switch off mid stream. Does he make the initial incisions and remove the patients original liver along with attaching the new one (makes me think of installing as a good word... :-)

I know that sometimes when the liver arrives and the Dr's assess it, if something isn't right the surgery is off. We asked how often this happens and he said not often as they actually go evaluate the organ of the donor first and do the harvesting themselves. When UNOS calls and makes an offer of a liver to our Dr's. If it matches one of their patients the surgeons actually fly out to harvest the donor's organ and bring it back to Loma Linda and the surgery proceeds from there. 2 of the 4 Dr's are usually involved, sometimes 3. Who actually would be performing my surgery could be any of the 4 depending on who is on duty when *MY* organ offer becomes available. With a 8-12 hour surgery that makes for a very long day...He said sometimes 36 hours. Plus he sees new patients and after surgery follows all his patients post surgery. Who ever performs my surgery will by my *new* Dr post surgery before being returned to Dr Mendler. An entire NEW team will take care of me post surgery.

Other things come into play that I hadn't heard of or considered regarding matching the organ to the patient. I knew about the blood type and size of the organ. The size of the liver can't be to big or to small for the person receiving it which makes sense. The other things they consider are the age and general health of the patient. He said for someone like myself who is fairly young, in fairly good health, (at this point the rest of the things that will eventually start to happen to me, I won't list them but they are nasty and I would rather avoid them if I can) and has a smallish body, they will look for a smaller, younger liver in good health that can sustain me many years. Well, I like that!!!!

In other patients that may be very ill and in the very end stages of liver failure they might use an organ that isn't so *perfect* as they need to get one in fast or the patient will surely die.

He said he thinks I am a good candidate for the transplant. We like him, he answered all the questions we had at the time before he ran out to catch his helicopter...

Oh, we asked how far the organs come from to Loma Linda. He said mainly the Los Angeles Basin and that Loma Linda, Cedar Sinai and UCLA get their offers first then the organs are offered to more outlying area's.

Then onto the anesthesiologist. We didn't really meet with *the man/woman* just the dept as they were gathering data from Cardiology and Pulmonary to get clearance for me to go under.

I passed. Barely. My heart is getting better apparently. My lung function is still a bit compromised.

We made a stop at the transplant unit. I do that every time I am down there since staying there. I stop by to see how my ex-room mate is doing. She is still waiting for a liver and has been in the hospital quite awhile.



I lost my voice yesterday. Got up this morning and took some cough med that my nurse said was okay...well, it immediately wiped me out and I went back to bed and slept until 2.

Joe goes back to work tomorrow and we just found out that our friends Kim, Tom and family will be coming down Christmas. :-)

It's the little things

Something that stands out to me about the time Joe was gone and I was alone.

Of course I missed all the regular things one misses when your partner, lover, spouse is not there. Meal times, sleeping together, listing to them breathe at night...(read snore, LOL) The smell of coffee freshly made in the morning as you wake up. Those are the kinds of things you expect to miss.

But it is the little things that surprise you.

Like.............

Everyday when I got in the shower I was reminded Joe was not there because the shower head didn't need to be adjusted.

He likes one type of spray and I like another so normally when each of us showers we have to switch it to our preference.

It never needed adjusting. I was reminded every time I took a shower.................he wasn't there. And I missed him.

A rainy cold Sat.

As I sit here on a cold, cloudy, cold rainy afternoon....I have a fire burning, my dogs snoring beside me and my kitty cat on my lap between me and the keyboard..making it difficult to type, I am watching some old favorite movies on TV, (as good as it gets, gone in 60 seconds, raising Arizona).....I am relaxing thinking about the salmon I am going to make for dinner and waiting for my family to return. The boys are on dry land now and spending the night in Florida before coming home tomorrow. Finally. It feels as though they have been gone a really, really loooooong time.

I think I am more upset with my Dr's and their making me stay here now than when they made that call.

I really had no choice...if I wanted to get accepted to *the list* (we need a name for that)......... I hate not having choices and it is my usual M O to look for anyway around not having a choice until I find one I like. I am actually very good at that. There is no black and white in my mind just many shades of grey with different ways of looking at them, hence different choices......one can lead to another making life interesting. I never really understand when people say well, it is this way or that and they don't even LOOK or SEE the options that are right in front of them.....

Back to the Transplant Team....now, they DO see everything in black and white. Which makes it very hard for someone like me to play on the same team with them. They like people to just follow whatever directions they tell them. Never questioning, well what about this or that????

I know that staying here make it easier for them to get the tests done and see the Dr's I needed to be seeing which leads to seeing the Surgeon this week and hopefully get on the list by Friday.

BUT, in my heart I know that it would have been better for my overall being to have been on that ship with friends, family, relaxing, laughing, having fun, having new experiences together and creating life long memories for us than for me to have been on the list by Friday.

I would have been fine with not being on the list for another week or too and my soul and spirit would have been much calmer, happier and ready for all that is to come. (I also believe this helps your physical body as well)

I will let it go now as there is no undoing it but that is how I feel about it. It was a very big deal to me.

Fun with Telephone Salesmen...

I have other stuff to post but this was to funny to wait.

I had a REALLY GREAT DAY TODAY.. For some reason with the sun shining, I just felt great. I had *fun* appointments today with my hairdresser who flies in once a month from Wyoming, my manicurist who has been doing my nails for about 10 years and I got my tootsies done as well. I got home and everything was just making me laugh...mostly at myself.

Okay, so a call comes in for me. Joe answers it and hands it to me. It is some guy who is from *kitchen connections* He said we met at a home show at the LA Convention Center last spring and did I remember him and was I still interested in remodeling my kitchen and needing countertops. When I responded not at this time and he proceeded to ignore me and push on the way salesmen do...This is what I told him.

*Actually, I have decided to skip the kitchen this year and get a new liver instead!*...Well, he didn't say anything so I laughed....and said...It is about a half a million dollar investment so that will take up most of our remodeling funds this year.* LMAO.... :-) and I was cracking up.... I apologized to him and said I was sorry for being so blunt and hope I didn't offend him...hung up and Joe and I just busted up.....

So, next time you need to get rid of a telemarketer...now you have something else up your sleeve...

I know..kind of sick, but very funny..................

The newness of life

In order to learn something new you must first accept that you do not know it. To fully understand another person, you must let go of your desire to make blind assumptions and judgments about that person.
Turn down the volume and intensity of your own chattering thoughts, and you can hear the music of life. Stop expecting to see what you've always seen before, and new and wondrous beauty will appear in front of your eyes.

When you continue to perform a task the exact same way you've always done it, your effectiveness cannot improve very much. Be open to new ideas and techniques, and you can vastly accelerate your performance.

If you cynically think you've experienced it all, you'll close yourself off from much of life's richness. If you consider yourself smarter than everyone else, you'll be supporting and advancing your own growing ignorance.

Open your mind and your heart to the newness of life that comes with each moment. There is always more to learn, more to experience, more to appreciate and enjoy, no matter how much you've already done.

With each dawning day, a whole new world of possibilities is born. Allow yourself to know and acknowledge their newness, and bring the best of those possibilities to life.

-- Ralph Marston

I am not crazy or alone....

This is a comment that Dave who is Aimee's husband left under comments. I don't know how many of you know to add or look at the comments but I had to put it here. It made me feel so much better to read his response....Sometimes you wonder if you are going a little crazy and *is it just me or is it hot in here?* Kind of stuff...LOL

Thanks Dave,


WOW, you really hit a nail on the head there. I have been trying to grip that one also. I have had LOTS of people say lots of things that is very close to that. I know that they mean, "Congratulations that there is a way for you to live longer and beat this", but they say it just "congrats" and you are wondering, did you really hear me when I said my wife could die in two months (or your case would be "I could..")?

I guess it goes to what you are focused on! Wait, did i just connect your two posts together. Crap, I might have learned something about meaning and stuff in school all of those years ago!

Keep your chin up and focus on the possibility of many cruises with your family and all of those sunsets and sunrises that you have yet to enjoy!

Focus

Focus

If you focus on resentment, you'll create many more things to resent. When you focus on gratitude, you'll bring many more things into your life for which to be thankful.
Focus on anger, and you'll continue finding additional reasons to be angry. Focus on love, and the opportunities for experiencing love will greatly multiply.

Focus on life's best possibilities, and you'll move steadily in the direction of your dreams. Focus on the things you truly value, and they grow even more valuable.

Focus on what you are able to give, and you'll greatly expand what you are able to have. Focus your energy, your attention, your interest and your passion on some particular thing, and you can make the impossible happen.

Where is your focus most consistently directed? That is where your life is most certainly headed.

By choosing your focus, you choose your lifestyle, the world around you, and your future. Focus on what is truly good and right and valuable for you, and you will be gloriously immersed in that goodness.

-- Ralph Marston

One of the weird things that are bugging me

Ok, This just seems odd to me. I haven't mentioned that I am headed towards an organ transplant to many people...Well, except those of you reading this. Not something you just bring up at a cocktail party....LOL, maybe a good place to do so...BUT, more than once when I have mentioned it the response that I get is

CONGRATULATIONS !!

... Well, I don't know about you but it just always makes me want to whip my head around and say

HUH,? WHAT DID YOU JUST SAY???

. I mean, yes, I do feel blessed that I have a chance to have a much longer life by having a transplant than without. I feel grateful that the Dr's, medicine, and the donors make it possible for me to get a new liver and I have great hope that it will save my life.

Now, having said that....after all the things I have gone through and looking forward to what it will take to make this all happen.......I am not sure that when someone says to you. *By the way, I got hit by a truck last week and I am about to have it run back and forth over me a bit before almost killing me....it is going to be a pretty bumpy ride, but the chances are good I will make through alive.*

That the comment *CONGRATULATIONS* is the appropriate sentiment.?????????????

To me you tell someone congratulations, like when the say, I just got a promotion, we are having a baby, she said *yes*.....etc.....but not when someone says *hey, I just found out they are going to rip one the most important organs in my body out and replace it with another one and hope it works.....??*

Oh, well, got that off my chest now......this is a place or my emotions as well. I need to get them off my chest somewhere so this is a good a place as any...

Till later,
Happy Nancy

What Happened at our evaluation with the Transplant Team. And I do mean TEAM!

WELCOME TO THE SCARIEST DAY OF MY LIFE! Monday was here...October 29th, 2007

I was told that when meeting with the Transplant Team... That it was best to bring the important people involved in your health care and support team with you. There are lots of things beyond your current health situation that eventually come into play when THEY decide who ends up as a good candidate for receiving a new organ or not. As you know organs are in very short supply and they want to make CERTAIN that you will be able to accept and take care of the generous new organ you are lucky enough to receive.

I will go over some of the things that includes later but I do have to tell you it is an exhaustive list.

I brought with me, Joe of course, My wonderful friend Michelle (who I mentioned earlier, my nurse friend and rock), and myself. Mary would have been included also but she was on her way to Florida to spend family time there. She will also be a big part of my support team. We, including all of the Medical Team will be forming one team.

They had requested all of my medical records several weeks ago and called me to say they wanted to see me. First we met with the Nurse Practitioner who took an intensive background interview as well as a physical. Then the Dr came in. Dr Mendler. he had visited me in the hospital at the end of my stay. I do believe he is actually the reason that they sprung me.

What he said to me is actually sort of a blur. Michelle was taking notes feverishly. (good nurse that she is!) Basically what he said is YOU NEED A NEW LIVER AND YOU NEED IT FAST. He also said that with my meld scores staying so high that I would be near the top of the list as soon as I got on it so it could happen fairly fast. Especially because I have a common blood type and am otherwise fairly healthy. They are worried about my lung and heart functions as those *could* knock me off the list. Some of that depends on whether the conditions with those is happening because of my liver failure or not.

Who new you needed your liver so much or that it was responsible for so much stuff in your body?????

I was told that the actual surgery regarding a liver transplant is one of if not the most complex and difficult surgeries they do including, brain surgery and heart transplants....it can take from 7-11 hours. Your liver is attached to EVERYTHING.

I was also told that if the surgery itself is successful and they can keep you from rejecting the new liver that it can be extremely successful and add many good years to your life.

Then we saw the Transplant Coordinator, Judith. She went over everything that we had to do next.....That was when my head really started spinning....

I have classes to attend. LOTS of specialists to see, plus, I have to get up to date on about 10 vaccinations, get a clearance from my dentist, gynecologist has to complete an entire work up including mammogram, the regular stuff and some more, heart dr, lung dr, nutritionist, financial counselor, social worker,classes, support groups.....are you tired yet? Thank God I feel well, I would hate to think I had to do all this if I was really feeling ill. Everything is about a 1 hour drive from our house with no traffic each way so I am trying to make several appt's at a time.

My little hospital stay was over $60,000. This is a $500,000. procedure not including aftercare.

Time for a pee break....have to go grab my container....LOL