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[Guest guest]

" My sister has autoimmune liver disease and I am trying to find more

information to understand it. Is there a difference between

autoimmune liver disease and autoimmune hepatitis?

She was diagnosed in '98 originally with hep c

now she says it autoimmune liver disease

she's been fine until this summer and is currently taking a low dose

of prednisone and a chemo drug "

Hello -I wonder does your sister have Hep C and auto immune liver disease.Has

she already had treatment for Hep C ? She has obviously had many years of living

with liver disease and maybe feeling that she has had a death sentence for these

years. Liver disease is very draining of energy -and can also make you itchy

,effect sleep-exacerbating fatigue.It's very hard to motivate yourself and you

do feel isolated.

she seems very depressed and we all feel helpless. she does not pick

up or return most of her calls yet then emails her friends and family

that she is so alone and no one calls or visits her

i'm thinking the medication may have something to do with this

depression but we are at a loss of what support we can give. she

seems to feel her situation is absolutely hopeless and has made

funeral arrangements yet tells me the specialist says she can live a

productive life for years with medication.

Well ,poor girl -like many diagnoses when you are told there is no solution

-but rather an end -it's not surprising that your sister is traumatised.I would

say that I took a couple of years to come to terms with my diagnosis and feel

that there were some light days rather than dark.On days when fatigue is high

-it is difficult to see that you can contribute and you sometimes feel that you

are not able to take an active role in living . I would say that your sister is

still very traumatised by her diagnosis and as to the word " productive " -it

makes me angry -I had a very active life before my condition reared it's head

,and it takes a lot of work and thought and energy to change from being

" active,working " to what I now do.Motivation is very hard when you are

depressed.

My consultant told me that liver disease can cause depression because of the

lack of serotonin uptake enzymes which the liver helps to manufacture.Your

sister may need some medication to help.

The suggestion that when you visit you take over a meal is a good one -maybe

she is too tired to cook for herself and that doesn't help her health.Or put a

couple of home made meals in her freezer so she doesn't have to cook on a day

when she doesn't feel great.

Maybe when you go over ,you could clean through or do the ironing and then she

may have the energy to do something nice like go for a walk.

As to a pity party - I feel very sorry for your sister to have been diagnosed

with Hep C and now AIH ,but you are right to be pro active but not too gung ho

- maybe your sister has faced discrimination before this -not all people are up

to speed with liver disease and do shun folk just because they have been

diagnosed with it.Maybe she has been treated badly because of diagnosis.

As to smoking -get off her case,she knows that it's bad for her.It's very hard

when you are facing a life that is isolated ,possibly a bit meaningless,and

depressing.Your sister may need some education herself about her condition .

It's also very hard to have the energy to exercise when you haven't got the

energy to clean up.

we are also concerned that she is not doing her part in managing her

illness in that she still smokes and doesn't try to get any exercise.

I need advice in how best to deal with this. I want to help but

don't want to be held hostage to someone's possibly skewed view of

her situation. I'd like to do something meaningful and proactive for

her and don't want to get caught up in an endless pity party. This

is my first step, to try to understand what she is going through

I applaud you for trying to get into your sister's shoes and help her.Well done,

Louise

[Guest guest]

Sylvia,

Your having CLL and lupus (SLE) makes me wonder about the

connection. I have CLL -- diagnosed 3+ years ago at stage 2. A

great-aunt on my mother's side also had CLL, and my mother had lupus,

as did her first cousin (the great-aunt's daughter). So there's

both lupus and CLL on my mother's side. Does anyone know if this is

a common association?

Schaffer