A must attend So Cal seminar !!!!!!

Fighting for Health in the 21st Century


A golden opportunity to hear experts and ask questions regarding..

· Managing diabetes and kidney disease

· Cardiovascular disease, tips for senior health

· Cancer—promising new research and treatments

· How to obtain health insurance from an expert

· Social security benefit claims—the “how to” from an attorney

· Updates on Liver & Kidney Transplant Surgery

· Fatty liver, get the skinny on fatty liver disease



Presenters:



Rodolfo R. Batarse, MD, Nephrologist, Palm Springs, CA: Managing diabetes & kidney disease

Charlie W. Shaeffer, Jr. MD, Cardiologist, Rancho Mirage, CA: Tips for insuring Seniors’ healthy hearts

David Young, MD, Oncologist, Rancho Mirage, CA: Promising new Cancer Research & Treatments

Tom Perkin: Need help getting medical insurance? Tom is the expert to assist you

Bill La Tour, JD, Social Security expert and attorney: The “how to” on SSDI & SSI benefit claims

Okechukwa Ojogho, MD, TX Surgeon, LLUMC: Update on Liver & Kidney Transplant Surgery

Donald Hillebrand, MD, Hepatologist, Scripps Hospital: “Get the Skinny on Fatty Liver Disease”

Where

Desert Regional Medical Center, 1150 North Indian Canyon, Palm Springs

Martin Anthony Sinatra Education Seminar Auditorium



When

Sunday, November 23, 2008 1 – 5 P.M.


No charge for Admission
Refreshments & Fellowship


For Further Information Phone 760-200-2766


A Presentation by the FAIR Foundation Liver Disease & Transplant Support Group


Sponsored by Roche and Astellas

Let's talk Liver.....Fatty Liver in particular (NASH)

The slide on the left shows fat accumulation in liver cells. The slide on the right shows healthy liver cells.

Ok, Enough with the pretty pictures and back to the subject at hand....Liver disease.


This photo as you have guessed by now is one of a fatty liver. Fatty Liver is one of the steps towards Cirrhosis. It doesn't always end up as cirrhosis but a lot of the time is does.

It can either be alcoholic related or not. NASH stand for Non-Alcoholic Liver Disease.

I am going to repost a little bit here and give you a couple of links to look at but what you should know is that it is becoming more and more prevalent and is effecting younger and younger people. Even children who are overweight. It is a serious health care problem today.

I will tell you how it relates to livers available for transplant in a minute...

Nonalcoholic fatty liver disease

Definition

Nonalcoholic fatty liver disease (NAFLD) describes a range of conditions involving the liver that affect people who drink little or no alcohol.

The mildest type is simple fatty liver (steatosis), an accumulation of fat within your liver that usually causes no liver damage. A potentially more serious type, nonalcoholic steatohepatitis (NASH), is associated with liver-damaging inflammation and, sometimes, the formation of fibrous tissue. In some cases, this can progress either to cirrhosis, which can produce progressive, irreversible liver scarring, or to liver cancer.

Nonalcoholic fatty liver disease affects all age groups, including children. Most often, it's diagnosed in middle-aged people who are overweight or obese, and who may also have diabetes and elevated cholesterol and triglyceride levels.

With the increasing incidence of obesity and diabetes in Western countries, nonalcoholic fatty liver disease has become a growing problem. Although its true prevalence is unknown, some estimates suggest it may affect as many as one-third of American adults.

Because early-stage nonalcoholic fatty liver disease rarely causes any symptoms, it's often detected because of abnormal results of liver tests done for unrelated issues. Treatments for nonalcoholic fatty liver disease include weight loss, exercise, improved diabetes control and the use of cholesterol-lowering medications.

Here is a link to more technical stuff from wikipedia talking about the differences between Fatty Liver related to alcohol or not....

One of the reasons I bring it up is PLEASE have your blood drawn at regular physicals and ask your physician in particular about your liver enzymes. ALT and AST. If they are high you need to pay attention !!!!!

I wouldn't be where I am if I had.....But then nothing is going to happen to ME !!! or so I thought. There won't be any outward symptoms....You won't FEEL sick but your liver may be screaming at you.

Something I learned from my coordinators at Scripps I find interesting. Usable livers available for transplant are getting scarcer as they can take a perfectly healthy looking donor. Get all the approvals for transplant from the family. Be ready to get the organs of that generous person ready for transplant. With a liver that includes a biopsy. And low and behold the liver is a *FATTY LIVER*, therefore NOT good enough for a transplant.

This is happening far more these days than in days past. There is more obesity, more diabetes or pre-diabetes etc and it is effecting the liver so much that it is no longer a viable organ for transplant.

ALSO, the increase of fatty liver in the general population is increasing the number of people who NEED transplants...

As you can see, it is becoming a huge problem and is effecting transplant from both ends. Donors available and an increase in recipients listed for transplant.

Hope everyone got out and voted today!

All the reasons you might need a liver transplant

I thought you all might find this interesting...............................

Reasons for Liver Transplants

Liver Diagnosis Categories	Liver Diagnoses
NON-CHOLESTATIC CIRRHOSIS	Laennec's Cirrhosis (Alcoholic) Laennec's Cirrhosis and Postnecrotic Cirrhosis Cirrhosis: Postnecrotic--Type C Cirrhosis: Cryptogenic--Idiopathic Cirrhosis: Postnecrotic--Autoimmune-Lupoi Cirrhosis: Postnecrotic--Type B-Hbsag+ Cirrhosis: Postnecrotic--Type Non A Non B Cirrhosis: Postnecrotic--Type B and C Cirrhosis: Postnecrotic--Other Specify Cirrhosis: Drug/Indust Exposure Other Specify Cirrhosis: Postnecrotic--Type B and D Cirrhosis: Postnecrotic--Type A Cirrhosis: Postnecrotic--Type D PNC CAH
CHOLESTATIC LIVER DISEASE/CIRRHOSIS	Primary Biliary Cirrhosis (PBC) Sec Biliary Cirrhosis: Other Specify Sec Biliary Cirrhosis: Caroli's Disease Sec Biliary Cirrhosis: Choledochol Cyst Choles Liver Disease: Other Specify PSC: Other Specify PSC: Ulcerative Colitis PSC: No Bowel Disease PSC: Crohn's Disease
BILIARY ATRESIA	Biliary Atresia: Other Specify Biliary Atresia: Extrahepatic Biliary Atresia: Alagille's Syndrome Biliary Atresia: Hypoplasia
ACUTE HEPATIC NECROSIS	AHN: Etiology Unknown AHN: Type B- Hbsag+ AHN: Drug Other Specify AHN: Non-A Non-B AHN: Type C AHN: Type A AHN: Other Specify AHN: Type B and C AHN: Type B and D AHN: Type D Hepatatis C: Chronic or Acute Hepatitis B: Chronic or Acute
METABOLIC DISEASES	Metdis: Alpha-1-Antitrypsin Defic A-1-A Metdis: Wilson's Disease Metdis: Hemochromatosis-Hemosiderosis Metdis: Other Specify Metdis: Tyrosinemia Metdis: Primary Oxalosis/Oxaluria-Hyper Metdis: Glyc Stor Dis Type II (GSD-II) Metdis: Glyc Stor Dis Type I (GSD-I) Metdis: Hyperlipidemia-II-Homozygous Hy
MALIGNANT NEOPLASMS	PLM: Hepatoma--Hepatocellular Carcinoma PLM: Hepatoma (HCC) and Cirrhosis PLM: Cholangiocarcinoma (CH-CA) PLM: Hepatoblastoma (HBL) PLM: Hemangioendothelioma-Hemangiosarcoma PLM: Other Specify PLM: Fibrolamellar (FL-HC) Bile Duct Cancer (Cholangioma-Biliary Tr) Secondary Hepatic Malignancy Other Specify
OTHER	Other Specifiy Cystic Fibrosis Budd-Chiari Syndome TPN/Hyperalimentation Ind Liver Disease Neonatal Hepatitis Other Specify Congenital Hepatic Fibrosis Familial Cholestasis: Other Specify Familial Cholestatis: Byler's Disease Trauma Other Specify Graft vs. Host Dis Sec to Non-Li Tx Chronic or Acute Benign Tumor: Polycystic Liver Disease Benign Tumor: Other Specify Benign Tumor: Hepatic Adenoma

Policies | Members | About OPTN | Donation & Transplantation | Data | News | Resources | Text Based Version of this Site

The wonderful people who are waiting for a liver at Loma Linda

Today was *support group Tuesday*.

Loma Linda University Medical Center has a wonderful and very active Transplant Center with many patients. Not only liver but kidney, kidney-pancreas, heart, bone marrow and stem cell research and transplant.

In our support group we meet strictly with liver or liver/kidney patients and there are quite a lot of us undergoing treatment in various stages, all very serious if not life threatening.

Today was a difficult day. Almost EVERYONE that was there today is dealing with very difficult symptoms of liver disease.

Encephalopathy, confusion,
Edema,
Acsites,
Very Bloody Noses...(wake up with blood all over pillow)
Esophageal Varices
passing out,
collapsing,
insomnia, no sleep in 3 days,
total fatigue, can't stay awake
change in sleep patterns, sleep all day, awake all night,
Leg cramps, hand cramps with no relief,
severe itching,
stroke,
heart problems,
pulmonary problems,
diabetes,
beginning kidney failure
dialysis,
bruises,
wounds,
weight gain,
weight loss,
pain,
relationship problems,
depression,
fear,
and liver cancer

I am serious! Every one of these was a problem someone was having today!

Lucky for us we also have some incredibly generous people who have been through all the symptoms,and fought through them to transplant, recover and a renewed life.................

THANK GOD FOR THEM! They give the rest of us so much hope. If we didn't have them to look at, watch them breathe, walk, share and live normal lives......Well we owe them a lot.

Today our post transplant volunteers who were in the meeting were post transplant 4, 9, 10 and 13 years..... They give up their day to show up for US. All this time past their transplants when I am sure they have better things to do and they come and give freely of their time.

They don't need us....

They do it because we need THEM! We need to look at the living hope and know that one day that could be us.

So, I want you to know that we appreciate you spending your time with us!!!!

We also appreciate the caregivers out there who are dealing with our issues and didn't sign up for it.....We don't say thank you enough...sooooooooooooo THANK YOU.

There are 2 others I would like to bring to attention for prayers...

Tim, who has been in the hospital for 4 months waiting for a liver. He is VERY ill and needs a liver yesterday.

David who received his new liver 2 weeks ago and is struggling. His liver is functioning well but his body is having a difficult time recovering. His new blog his family started is here.

I am not trying to be depressing just letting you know that across the country there are 19,000 people waiting for a liver. Most won't get one in time to save them and it is not a comfortable way to live or ...........

Please, if you so desire and haven't yet done it please go to donate life and register as an organ donor and encourage your circle of friends.. Then talk to your family to make sure they know what your wishes are. Right now they have final say. Donate Life America YOU NEED TO GO THERE EVEN IF YOU HAVE A PINK DOT ON YOUR LICENSE!

Read this below from their website:

Right now nearly 20,000 Californians wait for an organ transplant. That's 21 percent of the 94,000 people waiting across our country. Tragically, one third of them will die - waiting.

Until now, no Registry has existed for those of you who wished to give consent to be an organ and/or tissue donor. Historically, while signing a donor card and placing the pink dot on your license served as an important symbol of your intent, it did not place you on any list or Registry.

Now, Donate Life California allows you to express your commitment to becoming an organ, eye and tissue donor. The Registry guarantees your plans will be carried out when you die.

Since July 1st of 2006, individuals who renew or apply for a driver's license or ID with the DMV, now have the opportunity to also register their decision to be a donor in the Donate Life California Registry, and the pink "DONOR" dot symbol is pre-printed on the applicant's driver license or ID card.

You have the power to donate life - sign up today to become an organ and tissue donor. Your generosity can save up to eight lives through organ donation and enhance another 50 through tissue donation.


Tomorrow I am off to San Diego to the mandatory transplant class at Scripps in my effort to get a new liver sooner than later....

photos of fun symptoms of cirrhosis

I thought I would post some photos of things I found on the web to visually help you understand some of the MOST COMMON symptoms that we liver patients suffer. None of these are of me or anyone I personally know but they sure could be including the upside down pug peeing on the tree! LOL ( I really need to post some pictures of my pug and bulldog!) The photo of Salt is a description of what we CAN"T have or we end up looking like the people swollen with edema (legs) or ascites (abdomen).














The person with Jaundice really does look like the color I used to have and to some extent still do. People think I am *tan* although my eyes are still very yellow. At least I don't scare people now!











These are all very real. And common. And as a matter of fact some are mild, considering how bad it can really get. I have had variations of all these and have many friends who have varying degrees of them.

So, this is the deal. When we say we are tired.... we ARE. IT IS A SYMPTOM. It isn't like when YOU are tired...not a bit. We can't help it....It just is. Don't tell us to get up earlier, to go to bed earlier, to get some exercise, to eat better. Although those are all good things to do...Those are not our problems and they aren't going to fix the SYMPTOMS.... They are REAL symptoms of a very REAL disease. OUR LIVERS AREN'T WORKING CORRECTLY....

When we say that our feet are swollen....or we need to watch our salt. It doesn't mean we need to take off our shoes, and they will be better the next day... When we gain 5 # in a week......we are worried that our bellies will look like the one above soon and the Dr's will be sticking needles in us to drain liters of potentially dangerous fluid off. over and over again....

When we say we are cold...we don't need a sweater...(well, that could help!) But we are FREEZING not because it is cold (it could be 100* outside) but because our internal thermometers are broken...

When we are constipated...(sorry, no photo's of that one!) We are afraid if we can't go to the bathroom our toxins will build up to a point as to cause confusion, delirium, and even a coma because our ammonia levels get to high. This can also make us very, very sick...as in vomiting from to many toxins in our body. (Encephalopathy).. It doesn't mean we need to eat more fiber. it means we need to take our LACTALOSE!

When we need to PEE, get out of the damn way! WE DO AND NOW!

When we are having trouble swallowing we could be having our veins inside our esophagus be filling up with blood so much that they pop open which would be a life threatening emergency as in BLEEDING TO DEATH...It happens...ask any ER nurse.

When we say we can't eat or aren't hungry. It is literally very hard to even get a bite down...Give us *ensure* or some kind of high calorie, high fat food. ice cream, anything...just get some nutrients and calories in us...

CRAMPS, another of my favorites...... We get these very interesting, sudden, crippling cramps! The first time it happened to me I didn't know WHAT was going on because it seemed so unrelated. The mostly happen in our extremities, shins, calves, feet, hands, fingers and lower arms. They happen swiftly, without warning, very intense and in weird places. In muscles like your shin or on the top of your food. When stirring a pot or writing your hand suddenly becomes twisted and deformed and it HURTS LIKE HELL. They aren't like the cramps you have had so don't even try and relate....(take quinine tablets or drink tonic water. I keep a bottle around and chug it.. warm heat helps too)

The reason I thought I would post this is for a couple of reasons...

One is to let others suffering from these symptoms to know that they are common and YES, they are real. They happen to all of us.. It is helpful to know that they are related to your disease...(that is what a support group is for!)

The other is for friends, family and caregivers to know that they exist, are very real, and that you REALLY can't relate. As much as you think you do. You don't. You can't unless you too have had liver disease. (that is what a caregivers support group is for..)

We don't want to whine, complain, try to tell you how bad it is......We really don't want to.....But we do want you to know that they are real and just please be kind and gentle with us when we need a nap, need to put our feet up, need to take a hot bath, or need to get support and knowledge from online groups, face to face groups, read books, talk to other patients, etc. It helps us. Lord knows it has helped and continues to help me!

more fatigue and other symptoms of inivisible illnesses

You never know when it is going to hit you.

Fatigue, Extreme Tiredness....... It is an interesting thing. I haven't been overly tired. My energy level compared to what it used to be or what it should be if I wasn't sick is probably 6-7 out of 10 most days. But some times...you can't stay awake. I feel guilty about this. I don't want to feel guilty but I do.

Today for example I woke up after 8 hours of good sleep that most people would be more than happy to get..... I got up to start my day, as I was checking my e-mail I started to drift off. Now, I have tried to explain this before but it is difficult unless you suffer from the same kind of tiredness.... This is...THAT'S IT. I AM GOING TO GO TO SLEEP NOW!!!!! tiredness. So, I went back to bed went fast asleep and slept another 3 hours. I am still a little on the groggy side hours later. It is going to be one of those days...

The only thing that keeps me from really feeling guilty is because of my involvement in support groups and meeting other people that all shake their heads up and down and smile when anyone mentions this I KNOW, it is my disease and not laziness or anything else. IT IS A SYMPTOM of liver disease.

I think I will talk more about symptoms next....How difficult it is to explain to caregivers and others around you what is going on with you......................................... I gotta pee first....

another side effect of the drugs we all must take...........................................

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.

Interesting website on Pre Transplant evaluation work up

Pre Liver Transplant Work up

Very good photo's and explanation of required tests and procedures required for qualification for listing with UNOS.

Our Support Group at Loma Linda

I wanted to share with you all about my discovery of and delight in participating in our hospital Liver Transplant Support Group.

I am SOOOOOOOOO glad that I found this wonderful group of people to share our journeys of cirrhosis and the road to and after transplant with.

I have found it so interesting, heartwarming and helpful to be able to share what each other is going through. Amazing how EVERYONE has a different story of how they got to where they are now and how they are emotionally and physically facing the challenges of cirrhosis.

I guess I always thought that cirrhosis was mainly caused by alcohol and thought drug use probably figured in there but come to find out alcohol is NOT the biggest cause of cirrhosis at all ! Look up Cirrhosis here......

I think that we are very lucky to have such an active group of pre and post transplant patients. We certainly have some interesting discussions!

I would tell you that if you are suffering from something, whether it is a disease, a loved one with a disease or anything that has got you down and you need someone to talk to who understands there is nothing better than talking to people going through the same thing you are.

We have certainly have learned more about symptoms, what to expect and different ways of handling things that we learned from our quick Dr appt's. They just don't have that much time...

What Time Is It ?????

TIME TO BLOG !!!!!!

Ok, Ok, Ok..... I know.... I have been very bad and I feel really, really guilty.... Please forgive me for being absent.

It is SO HARD to start up after not posting for awhile as I don't know where to start or what to say, which is interesting because I think about you all and often want to share what is going on in my life or more likely my head. It is always spinning with stuff and I think..........I need to put that on the blog.......THAT is an interesting thought !!!!

And then, POOF, it is on with my day and my moves on to the next thing and I never get to share it with you.

And that is happening more and more as I am tending to really need to take my lactalose to keep my ammonia levels down as I am finding myself a little more loopy and forgetful than usual.

I have been taking lots of photos of things we have been doing so I will share some of those with you as we go along and catch up the past couple of busy summer months. I am going to try and find a way to include little slide shows...

One thing that is so cool.....HAVE YOU SEEN THE CLUSTER MAP ???????? That shows you where my readers are?? Is that not the coolest thing????? I love the Internet !!! (It's in the upper left corner. Click on it and you get a better view).

If I don't know you and you stop by or hang out awhile with me please drop a note in a comment attached to each blog and say *hi*....I would love to see/meet who is interested in my little journey.

I try to keep it light but add informative stuff regarding cirrhosis, liver problems, transplant, donation issues, etc. as I move through this experience.

Ok, gang.... On with the show!

Extreme Tiredness in Liver Disease

This was written by someone who was a caregiver for a cirrhosis patient prior to her transplant.

Tiredness is caused because the body is trying to heal. It is making adjustment (homeostatis) to try to do the functions the liver once did. The tiredness can be sudden and unforgiving. There is no choice but for the body to sleep.


There are poisons, or toxins, going into the blood now and building up causing changes in the way the body once functioned. Some of these poisons go pass the blood brain barrier and into the brain causing confusion. Medications and just the cirrhosis itself, can change the way food taste to the patient. Because of the build up of fluid in the body...especially in the abdominal area...this fluid puts pressure on the stomach and other organs; it also puts pressure on the diaphram making it difficult to breathe well.

The liver always made sure that the body had the nourishment it needed, that the special proteins where made, that the toxins were converted to non toxic substances, that certain vitamins were always available, that our food was broken down into simplier forms that the body could use and it even stored these for times when we did not eat. Add to this the emotional causes of this disease: wondering if there will be a tomorrow, wondering if those we love will be alright if we leave them, watching many of the dreams we had in life disappear, feeling guilty if we think we brought all this on ourselves, wishing things were different and hoping we don't become a burden to our families.

Now to the mental aspects. Because of the toxins going into the brain...we cannot think clearly and start to make wrong decisions. We don't see that in ourselves, it takes others to point this out. Suddenly, people may start to treat us like children and make all the decisions for us and start to tell us what to do, how to do it, and we wonder if they are joking or they are serious. AS you can see, this disease can take its toll on a person if they let it. Most liver patients with a disease like this one, are found to be mal nourished, not breathing well, depressed. They are watching all the things this disease can do to the body and they can look in the mirror and suddenly don't see themselves anymore. They look like a skeleton that is having twins. There normal color skin in now an orangish yellow. Their own body fluids are darker and their stools are so light. They may be taking on a feminine appearance. It is like living in a body that has come from another planet. Hello, Spock. I'm now a being from the planet Cirrhosis. Beam me aboard.


If a patient needs to sleep, it is good to do so. These sleep pattern changes are considered normal for someone with this disease. However, the caregiver should be sure that they obtain some sort of nourishment. Without nourishment...the body will not have energy to function or last. If they cannot eat, ask the doctor about supplements he recommends. Also ask about any vitamins they might need... however, these supplement drinks have enough for the patient. Always check with the doctor to be sure, as these supplement can contain things certain patients should not have...the doctor can tell this by blood work.

When the liver starts to deteriorate...the functions (of which there is over 500) go down also. Some organs try to make up for the load of work. The kidneys filter the blood so it is trying to adjust the sodium (salt) in the body also the potassium, it is trying to keep us from becoming dehydrated, it is filtering out the normal waste and is now adding onto that the toxins in the body that the liver no longer converts. It is becoming overwhelmed. If you notice, those who are placed on the transplant list...not only have their liver enzymes and liver functions being checked, but also their kidney functions. The liver goes into failure and the kidneys will shortly follow. Some patients may be placed on dialysis because of this...to try to help the kidneys.


When someone says cirrhosis, everyone thinks it is only a liver problem...that is not so...it effects many other organs also and it effects the body as a whole. Scar tissue does form in the liver causing the cells of the liver to die. The spleen can enlarge because of the back up of blood not being able to go through the liver and be rerouted into smaller vessels to try to return this blood to the heart. The stomach has pressure put on it from fluid build up. The heart has to adjust to slowed return of blood to it. The lungs cannot expand well with pressure up against the diaphragm and fluid can develop in them. The digestion of the food is altered since the bile may not be reaching the intestines. There is vitamin deficiency that develops and the homeostasis of the body become altered in many different ways. The mind (brain) becomes unclear because of poisons.


If you really look at Cirrhosis in the light of the entire body...even the skin is affected, you could say you have disease of the entire body. The hormones are changed, proteins are not made, the immune system starts to work overtime.


By the way, anyone who has cirrhosis should see about their teeth and also their eyes. We sometimes forget this. Those who have a transplant can have problems with these areas afterwards. I would like to suggest, that if you do vomit...try to wash your mouth out with water right away and brush your teeth. It isn't normal for the acid in your stomach to be in your mouth and can cause dental problems. Anyway you can neutralize the acid in the mouth is good...the doctor can tell you what to use. Another thing to think about is your bones. Ask your doctor about trying to protect your bones. He may start you on calcium, phosphorus, vitamin D and even do a Dexa scan to be sure you don't develop osteopenia. Many patients spend months in the house or in the hospital, with not eating properly... it can cause the bones to deteriorate also.


I hope this information is of some help to you.

The General Public's idea of Transplant

I am going to re post something a friend of mine with cirrhosis wrote.

The pictures above are livers with cirrhosis, the one in the middle is one of my favorite pics I call Dr's Peering, and third a healthy liver. This is an actual liver of another one of my friends with cirrhosis, his relatives liver. It was taken by her surgeon who was performing surgery on her intestines and he gave this to her.

Here are some thoughts on what Mr and Ms Public thinks transplant is from my fellow friend with cirrhosis:

The general public thinks that if you need a transplant, you are
automatically placed on the list for one. They believe that if you sign a donor
cards, that that means they will take your organ for someone else as soon as you
die. They tend to think that you are placed completely at the bottom of the list
and you have to wait your turn to reach the top of the list before you get a
donor organ. There is alot of misunderstandings that people need to have
corrected and come to know.




Just because you need a liver, doesn't mean you will be placed on the list.
You have to go through much testing and an evaluation process and seeing doctors
because the doctors decide if you will be placed on this list.




If you just sign a donor card, your organ will not be taken for someone
else because your family, in the USA, has the last saying whether it is or not.

(In California the Driver's license *pink dot* is not good enough. You need to go to www.donatelife.org to sign up for organ donation.)
Also, they have a say when the organ will be removed...when you are considered
to be brain dead and are hooked to machines or whether it will be after the
heart stops beating and the machines are removed temporarily.




When you are placed on the transplant list...you are placed on that list
according to the blood work you have done that tells the doctor how your liver
is functioning and how well your kidneys are doing. You are placed on that list
according to how much time they determine you have left to live without being
given a donor organ. You don't start at the bottom and wait as you eventually
get to the top. The very sickest patients that have only a few days or weeks to
live are placed at the top of the list. The healthier ones who might become well
enough that they don't even have to have a transplant are placed at the bottom
of the list because they have a long time to live without needing a transplant.
The doctor also takes into consideration what other medical problems you have
also.





Another misconception is that when you are called you will receive the
liver that day. This is also not true. You may go to the hospital and find out
that there was one other person before you and you are just there in case they
cannot have the transplant. In other words, you are really second on the list
and if they patient is too sick to go through the surgery or they cannot get in
touch with them or the doctors think that they won't be able to withstand the
long hours of the surgery...you might get the organ. You may be called and by
the time you get to the hospital, the transplant team will be examining the
liver and find out that it isn't good enough to transplant inside of you. It may
have something wrong with it or it has been out of the body too long to take a
chance in transplanting it. You could start to think that the doctors are just
testing you to see if you will be there when they do call you and you will
receive the transplant. Could be.They will know then that you are serious about
wanting to live and they will try to be sure you do then.





The transplant process is a very organized, complicated and long surgery.
From the starting on the transplant list and the evaluation process to the care
and discharge and all the clinic appointments afterwards...all of it has been
set up in advanced. They adjust the care accordingly for each patient. Some
patients may have a transplant and be leaving the hospital in just a couple
weeks, other are not that fortunate...yet, they adjust and be sure that every
step forward will be permanent as possible and not temporary.

Part 1.............................................

Ok, back to medical stuff

During the past couple of months I have had to realize that my energy level is not what it used to be. I pace myself. Sleep when I can. Tell people no when they ask me to do things I think would not be in my best interest. I rarely schedule anything ahead of time except for medical appt's and my weekly support group.



I also have notice a huge change in my internal temp and am ALWAYS cold. It will be 90* and I am under a blankie with a sweater on.



Both things are common to cirrhosis patients. I am grateful that is all I am dealing with as I watch and hear what my friends and fellow transplant patients are going through and there are some very, very rough things that happen to us.



I did have an Endoscopy over a week ago.

One problem that we can get with cirrhosis is that we build up a lot of pressure internally that needs to go somewhere and the weakest place is where it wants to escape which happens to be the veins that surround your Esophagus. They can turn into things called Varicies which is where the blood in the veins is weakening the veins and they are in jeopardy of bursting when you lift or least expect it. Leading to a lot of blood and a very fast trip to the ER to stop it. SOOOO, they like to check every so often by sedating you and sticking a very long thing all the way down into your abdomen to look at everything and take a few photos for prosperity. If while perusing your insides they find some, they *band* them by literally tying them with rubber bands that later dissolve.

MY personal problem with this procedure is that I have had it done twice and both times I was told by the nurses, Dr's and people who had undergone this same procedure that they would give me the nite-nite juice and next thing I knew I would be waking up and it would be over.

WEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEELLLLLLLLLLLLLLLLLL, NOT ME !!!!! I have to be different. I feel and remember everything. Try and gag the damn tube up the entire time and have a completely NOT FUN experience. This also happens to me at the dentist.

So, the Dr performing the procedure this time is my Liver Dr., Dr Mendler, who I like and I think listens to me. I explain my previous experiences and tell him if there is anyway possible I would rather not repeat it.

Well, low and behold, HE LISTENS TO ME! I am out for the next 2 days.....LOL But, I still was awake and gagging during the procedure which leads me to my first question for him when I have my appt in 2 weeks. "Do you think that we need to talk to the anesthesiologist about my resistance ?????" Oh, the results....good news is that they are a little bigger than before but not large enough to be put on blood pressure medication or have any banding......

OK, that and I have an annoying bronchial thing that has been hanging around off and on.

I realize that I don't want under any circumstances to have any cooties if they find my liver. I need to be healthy enough to go under the knife and wake up to a body with no immune system, a beautiful new liver and another chance at a long life filled with the people I love.

I need to start being much more careful (read obsessive) about what I touch, keeping my hands and my environment super germ free. So, if you come to visit me and there seems to be extra hand washing and shoes off in the house kind of thing. please understand... I can't see you if you think you might be sick at all or have been around anyone who is...Please help me ....I don't like being like this.

Okay, enough of the yucky stuff.

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

Understanding the MELD score

MELD score. Model for End Stage Liver Disease ..... it's all about the MELD

I got this off a support group I belong to in case you are interested. Basically the MELD score components are Bilirubin---Liver, Creatinine---Kidney function and INR, how well your blood is clotting.

The Meld score is a fair system. It is based on how long the person has to live without having a transplant done. They can tell this by the bilirubin level, creatinine level, and also the INR level.They have, in many places, added the sodium level to this.Bilirubin is converted by the liver into a soluble form and the liver also makes factors to keep the blood clotting which signify the INR level. So they are looking at the function that the liver does. The creatinine is a by product of using our muscles. The kidney normally removes this from the body. If the kidneys are having a problem, then this level will raise in the blood. The sodium is being watched more closely because of patients being put on a low sodium diet basically because of Ascites and edema forming. Sodium is one of the electrolytes of the body that keeps our hearts beating in rhythm. So it is very important.The Meld score starts at 6...these people are pretty well yet and have a long time before a transplant is needed...some even go off the list____the highest is 40...these people are very sick and may need a transplant in a few days otherwise they may go into a coma or become to sick to withstand the surgery. If your tests results show that you are getting better, you will go down the list...as you get sicker, you will go up the list.

People who are on the list, usually have a contact to be sure where they are located on the list.

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......

This is from a yahoo liver transplant group that I belong to...

The author gave permission for me to reprint it here. I think it sums up what anyone with a disease that has a similar prognosis feels but especially those of us with cirrhosis facing transplant can feel. I know I related entirely even though I sound *cheery* here.


When someone is diagnosed with cirrhosis, they may not even know what it is. They may not have any symptoms at first, either. They feel well and don't see why the doctor is so concerned. Many are diagnosed because the doctor was trying to have tests done for another problem and it happened to show up during that time. The patient needs to be informed of the seriousness of this diagnosis. How it is going to effect him/her in the future and what treatment is appropriate for them and what they can do to help reverse this disease, if possible.The problem is, that many people are not completely informed of all this and they leave the doctors office with more questions than when they first entered.The patient now is on a journey that he will travel mostly alone.Though, other may be around them, no one feels the horror or the pain and anguish but the patient themselves. And, to top it all off, the emotions that go along with finding out that you may die cannot be described completely in words. The unknowns ahead and the loss of privacy, self worth, and being able to handle everything yourself has just disappeared. You are now a specimen in a dish and whenever someone wants to stuff you will chemicals or poke at you with instruments...they have to have the right under the pretense that they are trying to help you. You ask yourself when you stop being human and start to be added to statistics. Suddenly, you find yourself studying up on a disease which you normally had no interest in all in. You search for ways to prevent further damage and look for miracles. You try to deny that anything is wrong, cause you don't want your life as you once knew it to change. You may become mad in the process of it all and ask why it was you when so many others have done things worse and never had to suffer. Or you are a victim of it all, where you have lead a very clean and healthy existence and then receive a blow like this.So caregivers, do you know what your patient is facing, Really?(1) If someone said to you that you were going to die tomorrow and it was definite...what would go through your mind?I won't have a chance to see my children grow up. People here rely on me to take care of them and now I am being forced to leave them and I worry about it. I never got to do the things in my life I always wanted to do. I never got a chance to really take the time to be with those I love the most and say the things I needed to say. I will never finish the things I once started and they will never get done.(2) Would you have regrets? The things in this life doesn't seem as important to me as they once did...after all, we have all heard the saying you cannot take it with you. I spent too much of my time worrying about little things and things we could have than I did with spending time with those I love and now it is too late. How can I undo all the wrongs I have done?(3) Would you feel like a burden? I no longer can handle the things I once did and now others have to do everything for me. Won't they get resentful that I am taking up most of their time and they would have a better life if I wasn't here.The patient can feel very much alone. They can start to see life much more clearly than the person who is well, as they see what really is important. They know that others are doing for them and that they have not only loss their independence but are now treated like they have no say in anything at all. They can become extremely depressed and tired.However, everyday they face the pain, face the changes of their body...like someone is playing a bad joke on them, face the anguish of seeing the pity in others eyes, face the torture that the disease is not getting any better as time goes on.Though, this post can depress not only those who are caregivers, but also the patient themselves....Both the patient and the caregivers need to know what is in the minds and hearts of those who go through this.This way they come to be more understanding, compassionate, and more caring. This however is a Journey...and a true learning experience.Someday, those who are caregivers now may become the patient.We all have a time to share and help others, and others have the time to share and help us. Through open communication, the journey is not taken alone, but with those who love us the most.


Sorry that it all runs together but I just cut and pasted from the original author and didn't want to change anything....

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!)