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!

Speaking of alcohol. Here is some of my story I haven't talked much about.

Since we are on the subject of alcohol. I haven't really spoken much about how I got in this predicament of needing a new liver.

I was answering a letter today by a friend regarding alcohol in her life and the fact that she was having high liver enzymes show up in her blood work which resulted in some further testing, (an ultrasound and a biopsy) that showed she has fatty liver. She is my age and our drinking habits over our lives have been similar. She wrote and asked me a couple of questions and as I started answering here I actually wrote a *book*..... Well, it was a long answer to some brief questions.

When it comes to my drinking history, my disease, and my obvious regret to not heeding the warning signs that were there if there is anything I can give back or help give people an awareness of who are at risk I want to help them with the truth.

My Doctors never gave me *THE TRUTH* about what I was facing. It was all pretty sugar coated. *You should think about cutting down,,,,,,,blah, blah, blah,,,,,,,, and never really telling me what might happen to me if I didn't stop in time. I didn't know the difference between high liver enzymes and anything else. They never mentioned the word cirrhosis or what end stage liver disease is like.... nothing. I truly think if someone had taken the time to explain the consequences of NOT stopping I would have at least had a chance to make a different choice and my path could have been completely different.

Here is my response to her. I now have over 400 readers around the world, (check the map!) and if what I have to say helps one person........then the blog will all be worth it..... That and helping people realize the need to make the effort to go to donate life and become an organ donor.

I am glad that you took my e-mail as it was intended. One thing that I want you to know is that I am NOT at all judgmental of you or your drinking and that I will always be honest with you. I am worried that you believe that you have fatty liver because you are overweight or *obese*, which is an absurd word…. Some extra weight might not be helping but I don’t believe it is the cause of your fatty liver. I also don’t think the Dr’s are always straight shooters because they like to skirt around the alcohol issue or just say to you…*don’t drink*. Mine said… *go to a meeting if you have to*, like that was an answer to anything! I know that my cirrhosis was caused gradually by my drinking habits which started when I was around 16-17 and was part of my social life from then on. Neither I nor my friends or family considered myself *an alcoholic* or did I have trouble with shaking, vomiting, or any of the other nasty problems with the exception of the year or two prior to my hospitalization when it was to late. I am certain my liver was cirrhotic by then. My problem was I was a *daily* drinker. Not every day, but most days. Like you, in the evenings, weekends, vacations…..well, you can drink all day on vacation, right? Is it noon yet? Ever heard of a mimosa or a bloody mary? LOL….I could pretty much fit alcohol into any social situation appropriately. No one thinks twice when you have a tropical drink in your hand on vacation… right? and Vodka seems to go with everything and don't we all consider wine ok? It all seemed very normal to me. So, it was the ONGOING assault to my liver as the weeks, months and years past that was my livers demise. With all the research I have done since I found out I was sick I have determined that alcohol is harder on women, it is harder when we don’t give our livers breaks….so even if it is just a little but on a frequent basis……..that is a huge problem… *FOR YOUR LIVER*, it may not be a problem as in affecting your day to day life….but could be advancing your liver disease and you wouldn’t even know it. Liver disease, doesn’t hurt, doesn’t make you *sick*, (until it is too late and cirrhosis has kicked in). My Dr’s are telling me that I have a 50/50 chance of surviving 5 years if I don’t get a new liver soon. A 50/50 chance???? I am not very happy about those odds. So my advice to you, as hard as it is for me to give it to you is to NOT drink, AT ALL. You are not doing yourself or your family any good by quantifying it by saying * I only drink this or that…….* Your liver doesn’t know the difference. It is a toxic substance that is very, very hard on it and it is throwing up warning signs IF you will listen to it. I know the thought of not drinking at all is daunting. I couldn’t imagine my life without drinking. Joe and I will be celebrating our 25th wedding anniversary in a couple of weeks and I told him….Can you believe we won’t be drinking a great bottle of wine with our dinner celebration????? Doesn’t seem right. But it just is, now and from now on. Which is fine with me. I really like life without alcohol! Who knew???? If you have the opportunity to stop your liver problems now, and you do, you should take that opportunity and thank God he gave you the warning signs that many of us didn’t get. I so wish I had a biopsy when my liver was just a fatty liver and hadn't crossed that hard line in the sand of cirrhosis. I stopped with the help of SMART RECOVERY. And a drug called naltrexone. I believe that alcohol affects our body and brain is certain ways after years of use. Our body is USED to operating with it and it feels normal to us. What naltrexone does is basically put *coating* on some pleasure points in our brain that make us like alcohol. (That is the short version.) You can drink on naltrexone. It won’t make you sick like antibuse. You just do not enjoy it. It is very weird. I had heard that and tried it…While taking it I tried to drink a glass of wine that would normally have been gone within 45 min and 2 hours later there was still ½ in the glass. I just didn’t want it…. When I really decided to stop totally I drank the day I planned on stopping, took my first dose of Naltrexone that night before bed and didn’t want any alcohol at all the next day and haven’t had a drop since! I was ready to stop, it just helped my brain from wanting it…it is a physical addiction, like cigarettes, and also some of us are just pre disposed to not being *real social drinkers* which by the way drink a couple of times a year at a wedding or on a vacation, etc. NOT ON A REGULAR or DAILY BASIS. Woosies…lol. www.smartrecovery.org http://www.assistedrecovery.com/beta/cbt.htm . I know it was the help I needed to stop my addiction. Re read the article I sent you. Especially the part regarding women and the progression of the disease. Right now you are still in a position to reverse the effects of alcohol. As always if there is any way I can help or encourage you or you need an ear or shoulder you can count on me. Maybe you should come see me when I am in ICU recovering from transplant with dozens of tubes coming out of me and the stapled torso where they cut me open to put my new liver in, spend time with me for the months of recovery and live with a compromised immune system for the rest of my life because of all the drugs I will now have to take and then ask yourself if the evening cocktail or 2 is a good idea.

Very sincerely yours,

Nancy

Alcoholic Liver Disease pre cirrhosis to cirrhosis

Definition

Alcoholic liver disease involves an acute or chronic inflammation of the liver induced by alcohol abuse.

Alternative Names

Liver disease due to alcohol; Cirrhosis or hepatitis - alcoholic; Laennec's cirrhosis

Causes

Alcoholic liver disease usually occurs after years of excessive drinking. The longer the duration of alcohol use and the greater the consumption of alcohol, the greater the probability of developing liver disease. Acute alcoholic hepatitis can result from binge drinking, and may be life-threatening if severe.

Malnutrition develops as a result of empty calories from alcohol, reduced appetite, and malabsorption (inadequate absorption of nutrients from the intestinal tract). Malnutrition contributes to liver disease.

The toxicity of ethanol to the liver, individual susceptibility to alcohol-induced liver disease, and genetic factors also contribute to the development of alcoholic liver disease.

Alcoholic liver disease does not affect all heavy drinkers, and women may be more susceptible than men. (Particularly daily drinkers who never give their liver a break.) Drunkenness is not essential for the development of the disease.

Changes start within the liver as inflammation (hepatitis) and progress to fatty liver and cirrhosis. Cirrhosis is the final phase of alcoholic liver disease. Symptoms may not be present until the disease is relatively advanced.

Serious complications are associated with advanced disease such as alcoholic encephalopathy (damage to brain tissue) and portal hypertension (high blood pressure within the liver).

Symptoms

· Loss of appetite
· Nausea
· Jaundice
· Abdominal pain and tenderness
· Fever
· Ascites (fluid collection in the abdomen)
· Unintentional weight gain (because of fluid collection)
· Mental confusion
· Excessive thirst
· Dry mouth
· Fatigue

Additional symptoms that may be associated with this disease:

· Vomiting blood or material that looks like coffee grounds
· Bloody or dark black or tarry bowel movements (melena)
· Abnormally dark or light skin
· Redness on feet or hands
· Paleness
· Light-headedness or fainting, especially with upright posture
· Rapid heart rate (tachycardia) when rising to standing position
· Slow, sluggish, lethargic movement
· Breast development in males
· Impaired ability to concentrate
· Agitation
· Fluctuating mood
· Difficulty paying attention (attention deficit)
· Impaired judgment
· Confusion (encephalopathy)
· Altered level of consciousness
· Impaired short- or long-term memory
· Hallucinations

Symptoms vary with the severity of the disease and are usually worse after a recent period of heavy drinking.

Exams and Tests

· A CBC may show anemia and other abnormalities.
· Liver function tests such as ALP are abnormal.
· Liver biopsy shows alcoholic liver disease.

Tests to rule out other diseases include:

· Ultrasound of the abdomen
· CT scan – abdominal
· Blood tests for other causes of liver disease

This disease may also alter the results of the following tests:

· Reticulocyte count
· Ferritin
· Alpha fetoprotein

Treatment

The objective of treatment is to discontinue alcohol, and to provide a high-carbohydrates, high-calorie diet to reduce protein breakdown in the body. Vitamins, especially B1 and folic acid, are associated with improvement. An alcohol rehabilitation program or counseling may be necessary to break the alcohol addiction. Management of the complications of chronic liver disease may be needed. If cirrhosis develops, liver transplant may be necessary.

Support Groups

The stress of illness can often be eased by joining a support group whose members share common experiences and problems. See alcoholism - support group and liver disease - support group.

Outlook (Prognosis)

Continued excessive drinking is associated with a shorter life expectancy. The probable outcome is poor if drinking continues.

Possible Complications

· Bleeding esophageal varices
· Portal hypertension
· Hepatic encephalopathy
· Cirrhosis

When to Contact a Medical Professional

· Call your health care provider if symptoms of alcoholic liver disease develop.
· Call your provider if symptoms develop after prolonged or heavy drinking, or if you are concerned that drinking may be damaging your health.

Prevention

Discuss your alcohol intake with your doctor, who can counsel you about safe amounts of alcohol intake for your situation.

Review Date: 5/4/2006
Reviewed By: Jenifer K. Lehrer, MD, Department of Gastroenterology, Frankford-Torresdale Hospital, Jefferson Health System, Philadelphia, PA. Review provided by VeriMed Healthcare Network.

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......

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.

my hospital stay Friday - Sat.

I was thinking something on Friday morning at 5:30am in the shower...(way to early for me!) Before when people said they were going for some kind of medical test, something with a name I had heard of over and over and over....like an endoscopy, or a CT scan, an MRI, a heart cath or angiogram. You know how it is...we hear the terms on TV, on the News, from friends and family, at the water-cooler...ya know???? For myself, I would hear the term and think I had an idea what it was and it was sort of in one ear and out the other, (unless it was someone close to me then I asked a few more questions, of course) BUT, we kind of take them for granted that they are standard, regular, test that happen all the time. And they ARE. Your Dr's and nurses think so, your friends and family think so and so do you.......Except when they are going to do one on YOU !!!!!

THEN IT IS MORE LIKE.................CAN WE SLOW DOWN HERE A MINUTE PLEASE AND MAKE PRETEND I DON'T HAVE A CLUE EXACTLY WHAT YOU ARE GOING TO DO TO ME, WHAT YOU ARE LOOKING AT AND FOR AND WHAT HAPPENS IF YOU FIND/DON'T FIND IT????? I KNOW YOU KNOW YOU DO THIS ALL DAY LONG BUT,,,,,,,,,I AM NEW HERE......WOULD YOU MIND STARTING AT THE BEGINNING FOR ME?.....LOL

So, one thing I have learned is that when people tell me they are going to the Dr for this or that...I am not going to pretend I have any idea what they mean....and ask them, What is that, how do you feel? Because a quick, I hope it goes well may not be what they need. They very well may be scared!.......

Maybe all this that I am going through is to teach me some things like this........................

Just a thought..............................................

Okay, now onto my sleep over.

Mary and I arrive at the hospital to check in and head to unit 4100 per instructions. We have no idea what unit 4100 does and like most of the units...they don't have a name by the number so you still don't know....I knew it was across the hall from the cardiac unit I went to last Monday so I assumed it was a overnight cardiac unit so they could give me blood and monitor me before sending me home. Hopefully that night but possibly the next morning. I feel great. A little nervous but happier that they were going to give me blood *products* (new term for me) so I wasn't worried about having my femoral artery punctured any longer and I trust the procedure and Dr's....very good success rate and I was hoping they would find my heart and lungs in good enough shape for surgery. If they did look at my heart and see what they thought could be the problem, well, that would be very bad as it is irreversible and would keep me off the list permanently.

I get shown to my bed, given my gown for the stay, new slipper socks, they get me in bed and do vitals, they ask all the same questions they ask every damn time you meet someone new. I think it is a test to see if you are still giving them the same answers. Hook me up to all vital machines. The vampires come in to draw blood and put a catheter in. etc. etc.

Then something odd happens. A Dr pops in to say hi and see how I am am doing. We recognize each other. We met a couple of times during my stay the 1st of Sept. (unit 6200). :-)
His lab coat says something about being on the transplant team. Hmmmmmmmmmm, Did he just come in to check on me? I haven't seen him down at the transplant offices.....hmmmmmm.

Well, I asked the nice nurse, Sara, what unit this is...she tells me it is the transplant until and looks at me funny like I should know...... (I am NEW here.....remember?) That hit me as, hm, this is where I will be for a few weeks post transplant. These are the Dr's and nurses who will be taking care of me after I get out of ICU. It was sort of a weird revelation. As I stayed there it almost felt like home and I felt safe and understood as THESE Dr's and nurses only take care of transplant patients and know so much about the symptoms, how the bodies are acting and reacting. The drugs we are on and why...why we look and act the way we do. My room mate was there for a liver transplant. She was pre-transplant and going through dialysis waiting for a liver as her kidneys had failed and she was in pretty bad shape.

I was very impressed with the unit and the people that work there.......a preview of sorts.
I guess anytime I need to go into the hospital from now on, no matter what the reason that is where I will go.

I will speed things up.
I ended up getting 1 unit of platelets and 3 units of plasma but the timing had to be perfectly timed with when they would be ready for me in the cardiac unit. So I waited until late afternoon to get the blood *products* I just pretended they were my girlfriend Michelle's as she gave platelets in my name at the blood bank the day before.....

THANK YOU MICHELLE......(HUGS, HUGS, HUGS!)

They wheeled me down the hall into a large room like on ER with *HAVE A HOLLY, JOLLY CHRISTMAS* playing....and Frosty, Rudolph and so forth to follow. How very festive. LOL

Scrub me, drape me, tie me down.....having fun so far...Then they tell me I am going to get some happy juice! Oh boy, sounds like a party to me...Then when I asked WHEN do I get my happy juice, as you are awake during this thing, they tell me, OH, we are so sorry, no happy juice for YOU...Your liver doesn't want any today. Shit, ok, it's white knuckles for me.

The surgeons and techs were all very nice, explained everything and went about their business.

If you want to know what they do...an angiogram or heart cath...same thing...they did a left and a right heart cath on me. They numb up your groin area where they go in. They put in 2 catheters into my femoral artery and proceed to take this small tube with a hook at the end...(flexible, about 5 feet long) and thread it up your artery and into your heart for a look see.

It really was painless but if feels like a plumber doing rotor rooter on you. You know those snake things? They thread this thing up into your heart, shoot contrast through it and take pictures on the 4 TV monitors that you can watch...it is amazing actually, watching your own heart beat and when they shoot the dye in it illuminates all through your very own vessels... I guess the most uncomfortable thing was that I could feel it in my heart. The catheter. I could feel it. A bit uncomfortable and they didn't tell me that so I wasn't ready for it.

Then, POOF, they took it out and it was over! They plugged the artery with a self absorbing plug that seals it and told me not to move for 2 hours. They also said...

YOUR HEART LOOKS REALLY, REALLY GOOD!!! The pressures are good, etc. I asked..good enough to get me through the surgery? and the answer was a preliminary YES!!!!!!!!!!

We were sooooooooooooooooooooooo, happy.....finally some good news. I was starting to think that I hadn't gotten any *good* news since I entered the hospital 3 months ago. Which was true.

I got a good nights sleep and went home Sat afternoon. Rested most of the weekend..and was up and running this morning.

BTW, Mary stayed with me all week bless her heart and left Sunday morning to go home for a bit and get ready for Christmas.

Wow, that was a long story for a one night stay............................. I may miss a few days here and again but I make up for it...

Goodnight all !!! We are closer to the committee review/decision.

What now? Between then and Monday

Well, we officially started on the roller coaster ride of trying to gather good information to see what might be in our future and my emotional ride of would I live or die and how could I steer towards the path of life most effectively.

Do I work like hell to try and save the liver I have while all the time I could risk my other organs not holding up from the pressure and therefore not be eligible for a transplant OR do I pursue a path of transplant and the scary notion of someone ripping a hugely essential organ out of your body and replacing it with a strangers and hoping (crossing fingers and lots of praying) that everything will work according to plan.

Personally, I like my own liver, thank you very much, and really would like to keep the organs God gave me working.

In researching options including transplants with the help of my WONDERFUL FRIEND, MICHELLE, a very talented and knowledgeable nurse. I learned that getting a new liver was NOT an easy process. Not everyone qualified to be on the list and then you have to wait for a liver that is meant just for you. (You will be hearing from Michelle...she will also be posting here as well as Joe and my mom, Mary.....Joey may jump in as well)

My Dr at the time was monitoring me closely and was not talking transplant to much and would steer me towards giving it more time to heal.

Not getting many answers or a path to follow was really driving me crazy. Give me a goal and a way to get there....well, THAT I can follow and do something about. This vague direction was frustrating at best. Which by the way is one reason why I really couldn't answer your wonderful phone calls and e-mails....I didn't have much to report. Well, that all ended when Dr Runyon told me on my last visit that it was time to have a meeting with the transplant team for an evaluation.

Let's give this a try!

As most of you know I was had a nice hospital stay of almost 3 weeks at the end of August. I got there via the ER and Joe after being a pretty sick puppy off and on for about a year. It was my liver. I knew that but didn't really know or want to know how bad off I really was. I was trying to be strong and thinking I would get better after stopping all alcohol in May and trying to eat healthy and get enough rest, etc. but my body still wasn't a happy camper.

When I was finally admitted after much poking and prodding the nice Dr's at Loma Linda Medical Center told me that basically my liver wasn't functioning AT ALL. My lungs were not working to capacity, my hearth had a leaky heart valve, I had a huge build up of fluid, (ascites) not much in my abdomen but my legs and feet were HUGE. When they put me in bed for several days it all moved to my rear....boy, that was attractive!

Also, my blood clotting factors were very low, as well as my hemoglobin, which let to a blood transfusion. (it is still very low)

I had all kinds of Dr's visiting, lots and lots of tests, etc. Finally my liver specialist came in one sunny afternoon. I was all alone and he proceeded to tell me that I had over a 50% chance of not leaving the hospital alive.... WHAT ???????? OMG.... That is something you never want to hear and here I was alone. He delivered the news and left.... (I have a new Dr now).

There is a term we will talk about a lot which is my MELD score. It is the Model for End Stage Liver Disease. it is a numerical score that they get by calculating your Creatinine, (kidney function), INR (blood clotting factor) and Bilirubin, (liver, bile function).

6 Is less ill
40 is gravely ill

My score upon admittance to the hospital was 37.

Now it is hanging around 27 which is still way to high and it is staying there.

To end this post since my release I have felt increasingly better. I actually *feel* great even though my Dr's don't know why. They say I should be much sicker than I am. My kidneys are FINE and that is what is saving my life right now.

I have had a myriad of Dr's appts, and labs. Joe and I have been researching like crazy, I am trying to rest and listen to my body. Stress and getting overtired could be very bad for me right now. Also not eating....THEY WANT ME EATING ANYTHING I WANT AND ALOT OF IT! First time for that. I am trying to be very positive and have fit a few short cruises with the love of my life in.... Part 2 in a minute..... I need to pee...(diuretics are such fun!)