Re: Answering questions

[Guest guest]

Abijann,

You put things into perspective so well.

Thank you,

MaC

abijann <no_reply > wrote: You

may be surprised how little people know about cirrhosis and

it causes. You may also be surprised that they know just as

little about having a transplant.

People think that when you have liver disease, that you are

automatically placed on a transplant list. They don't know about

all the testing that goes with it and how hard it may be to get

on the list. They don't know that when they have liver disease,

to start early to be placed on the list while they are in fairly

good health...otherwise they may be waiting too long and die

because of it.

Many people don't know that just by signing their organ donor

card, that their wishes to donate an organ will not be recognized

unless their families know about it and want it done also.

They will not take an organ after someone dies if the family

decides they do not want it done. Also, they have the right

to say when the organ is taken...either at brain death, or

when the heart stops beating.

It is true that there are many causes of cirrhosis. Most of

the people here know that it can be caused by iron build up

in the liver...which is an inherited disease know as

hemochomatosis. It can also be caused by copper build up.

It can be caused by inflammation of the liver from having a

virus like hepatitis. It can be caused by fatty livers when

someone is obese or by build up of fat (lipids) inside the

liver. It can be caused by the bile backing up in the liver

because of the bile tubes becoming blocked or mal formed and

twisted causing strictures. It can be caused by exposure to

chemicals or drugs taken. But, what all people may not know

is that the surgeons and doctors say when they evaluate, through

all kinds of tests, that 2/3 of the people who have to have a

liver transplant never know for certain what caused their liver

to become cirrhosed. This is even after they have taken the

liver out and checked it out after surgery.

So, what do we say to people who are curious. Like other said

here...they either shy away from discussing it at all or they

automatically jump to conclusions. Let us look at things from

their perspective. When someone dies or is terminally ill,

many people don't know how to approach others about it...they

feel uncomfortable cause it is something they could not do

anything about and besides that it is a strange territory they

might have never encountered before or understood. Like why

people so young die so early in their lives when they are such

good people. The second thing is that this may be a first for

them and they don't know everything about the disease...and

like many here who are searching for answers and trying to

understand what is going on with them...they also have to become

educated about it. The third thing is that they may be very

concerned about what happened and yet, seeing someone die because

of it frightens them that it could happen to those they love also

or even themselves and they would not know how to handle the

situation any better than what the caregivers and patients who

are going through it now do.

So, what it comes down to is having patience with those who

have less understanding. By giving them information, they will

learn and pass it onto others. We need to give them the

benefit of the doubt and not take what they say to heart, for

they may mean well but don't know how to approach the subject or

the illness or what to say to someone who is going through so

much. I say, let us make them part of our lives and help them

understand more. You might be surprised that they may be

behind you 100% in being stirred to action to help more research

becoming available.

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