PBC - outcome

[Guest guest]

Hello everybody !

First, I will tell something about myself since I never posted before.

My name is Svetlana, I am 29 years old and I live in Serbia. I have a

book keeping agency. Married, no children. I am diagnosed with AIH 3

years ago and with PBC half year ago. I read a lot about this

diseases, but I would like to hear one thing from you. I found that

after 3 -11 years from diagnosing PBC, cirrhosis develops. Is it for

sure, with everybody who has PBC ? Or is it like with AIH, that there

is hope that cirrhosis is not going to happen ? I would like to have

children very much, but if I am gonna have for sure cirrhosis, what is

the point ? I dont have much chance to get liver transplant because

over here it costs 100000 euros or more and I dont have a chance to

get that much money. I dont whant to leave my child motherless.

Please, give me some hope !

[Guest guest]

-Welcome to the group. PBC is NOT a death sentence. But, yes, some

have died from it. But mostly they are people that were diagnosed late

in the illness plus they were not on urso soon enough. But, most

people can live a normal life span with it. You just need a good

doctor who understands your illness.and have all the blood tests needed

as often as needed and any other tests they deem necessary. AND feel

free to go ahead and have children.There is no reason not to. And, as

you have already been told cirhossis is just scaring of the liver and

everyone with PBC will have it. That is why it is called Primary

Biliary Cirrhosis. I hope you are taking ursodiol as that is the

only medication that will help stabilize your PBC. For the AIH you

need do be on prednisone whenever you are having a flare and that may

mean you will be on it for years......who knows. Some folks now that

have both are taking another medication, Cellcept. Let us know what

you are taking for medication. Any questions? Ask away. Joanne--

[Guest guest]

Thank you for your answers Joanne and Harper !

I am taking prednizon 15 mg a day, and finally ofter 3 years my blood

test is o.k. I am taking urso also, it helped something,but my gama GT

is still high. Maybe it will always be ? It cant be in a normal like

liver enzymes ?

I was trying to conceive with IVF. That did not go well because I

couldnt produce enough eggs . I was scarred what will those hormones

do to me since I already take hormones - prednizone , but my doctor

tells me that it is o.k. I cant believe him, because all the hormones

are connected. We stopped with trying because I dont have strength for

it now. My mother has cirrhosis and she is in a final stage. She dosnt

want to go to a doctor, she just want to get over with it.

Sorry for all this negativity in this holiday time, but... Its hard...

[Guest guest]

Svetlana, I'm not the best person to be writing you, because I know so little

about your particular situation. However, I wanted to let you know that we're

thinking of you.

Also, I want to say again that cirrhosis isn't a disease in itself. It only

means " scarring of the liver " . That scarring can be result from any of several

things. Cirrhosis can be very minor, of little importance, or it can be very

serious.

I'm sorry to hear that your mother is so ill. What has caused her cirrhosis?

Depending on the cause, treatment could be effective.

Best wishes to both of you.

Harper

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[Guest guest]

>Hi my name is I have both PBC/AIH I am on many drugs usro is one

I was diagnosed with both diseases in 2001 I was diagnosed late in the

game so I am on the liver transplant list. I have had chirosis for

almost 7 years now. But if caught early they can manage the disease

and not everyone gets a liver transplant, the drugs they give you put

you in remmision. I never was in remmision, but I know people who have

both that they are fine and will die of old age. I too have three

small children so it is hard, but you will be okay God will take care

of you. Just hang in their do what your doctors say and don't be

scared, everyone is different. If you have any more questions write to

me at jnords@...

Sincerely

PBC/AIH 2001

SEATTLE

> Hello everybody !

> First, I will tell something about myself since I never posted before.

> My name is Svetlana, I am 29 years old and I live in Serbia. I have a

> book keeping agency. Married, no children. I am diagnosed with AIH 3

> years ago and with PBC half year ago. I read a lot about this

> diseases, but I would like to hear one thing from you. I found that

> after 3 -11 years from diagnosing PBC, cirrhosis develops. Is it for

> sure, with everybody who has PBC ? Or is it like with AIH, that there

> is hope that cirrhosis is not going to happen ? I would like to have

> children very much, but if I am gonna have for sure cirrhosis, what is

> the point ? I dont have much chance to get liver transplant because

> over here it costs 100000 euros or more and I dont have a chance to

> get that much money. I dont whant to leave my child motherless.

> Please, give me some hope !

>

[Guest guest]

, I can barely see what I am writing because of the tears in my

eyes. Finally I have hope that I wished for, you gave me a present so

big , I got a very big load of my back. Thank you ! I fell like I am

starting to live again. It will be a beautiful day for me today. You

cant imagine how you made me happy.

Harper,

my mother has cirrhosis from drinking alcohol. She is a " silent "

alcoholic, I never sow her staggering, she was just killing her

unhappiness with a few glasses a day. She does not want to go to a

doctor. She was a few years ago, he gave her some medicine, but since

then she didnt saw him. I tried to talk to her, but she just want from

everybody to leave her alone to die. Thanks for caring !