clarification OF TERMS

[Guest guest]

There is still some ongoing confusion in this group, and a lot of newcomers. I

am going to post some terms which I have references for.

I hope that these clear up things, and if there are any different opinions,

please speak up. There is such a wide variety of the way things are done, this

list will definitely shed some light.

#1- A doctor who specializes in liver disease is a HEPATOLOGIST.

#2-Even a hepatologist does not have the final say in who gets a liver

transplant, the final decision is made by a TRANSPLANT SURGEON.

Many people state that a " doctor " has said that their loved one cannot get a

transplant, or is too sick, or has to be sober for two years, or does not have a

high enough MELD, etc. A horrifying number of these people are being told this

from physician assistances, and nurse practitioners, and even PCP's who are not

the authority on the subject. Normally, a PCP must refer a patient to see a

hepatologist, who is the one who decides if it is time for a transplant

evaluation or not. THEN it is a TRANSPLANT SURGEON who makes the final

decision. It is just silly to believe a doctor who will not even be a part of

the desicion process, but I have talked to many people who are caught up in this

trap.

**Be very clear on this point... The American association for the study if liver

disease reccomends a transplant eval at a MELD score over 10. OR for any of the

following complcations: bleeding varicies, or ascites, or stage 2 encephalopathy

(when it becomes noticable) or development of hepatopulmonary syndrome IE

shortness of breath, or onset of type 1 hepato renal syndrome or any combination

of these.**

If you live in a large city, it may be a fact that your transplant center does

not use these recommendations, but it is useful to know what they are. The PDF

of these is in our file download section, or by clicking this link-

http://www.aasld.org/practiceguidelines/Documents/Bookmarked%20Practice%20Guidel\

ines/Liver%20Transplant.pdf

#3-Cirrhosis is the end stage of liver disease. Therefor it is referred to as

ESLD or end stage liver disease. It is by definition a terminal illness, but

that does not mean a person is definatly going to die from it. Many do not die

from it, and live a long normal life without ever developing any symptoms. The

liver is the only organ that I know of that has the ability to compensate in

this way, and ESLD is definately not the same kind of terminal illness as other

kinds, but for administration purposes, it is always listed just the same. SSDI

hearings are expedited for people with ESLD for this reason. MELD score is the

BEST predictor of mortality, and that is why it is used as a criteria for

transplant considerations.

#4-Stage 4 is a DEGREE of fibrosis, or scar tissue which is also called

cirrhosis. Stages 1 through 3 are other stages of fibrosis, but when a person

reaches stage 4, they have ESLD, and it is not considered reversable. I say not

considered, because in rare cases, it does reverse, and no one knows why.

#5 Cirrhosis is considered to be a progressive disease, often no matter what

steps are taken to alleviate the aggravating factor, such as stopping drinking,

it can and does continue to progress. Sometimes it does not, but many times it

does. Certain lifestyles will help it to progress, and other lifestyles will

slow it down. Being over weight or continuing to smoke are two examples that

help progression.

#6 high ammonia readings do not automatically mean a person has encephalopathy,

but are associated with incidences of encephalopathy, and are generally not

good. People with normal ammonia also develop encephalopathy. This is also true

of itching. High bilirubin can cause itching, but a person can develop

" pruritis " or itching with normal bilirubin.

#7- All of the regulations and guidelines and other rules sometimes get

completely bypassed. I know of two patients in the last two years alone who were

transplanted without even agreeing to stop drinking!! In both cases, a liver was

available and the patient was in a coma, but it was a perfect match, and the

decision was left in the hands of the transplant surgeons, and family members

who in both cases decided to transplant them.

Folks, it is best to NOT rely on this for your self or loved one. It is rare

departure from how it is set up to work, but proof of how strange this life can

be.

I hope these clarifications help, and if any one has heard something different,

please let me know. Things are always changing. I hear about people having their

ammonia checked, but at CU, they never check it, they just prescribe lactulose,

mostly going on verbal information provided by the spouse. Things vary a lot

from state to state and city to city.

This post was verified by my wife for inconsistencies, and errors, and checked

by references.

Love, Bobby