Newbie Questions

[Guest guest]

Hello All- First let me say that it has been so comforting to read

the posts on this board. It helps me to feel a little more

connected. I have a few questions if you have the time or energy to

respond.

-Is it important to stay well hydrated when you have PSC? Drinking

water is such a chore for me. But I read on an earlier post that

even mild dehydration can cause bile thickening. How much water

should I be aiming to drink per day?

-I know everyone is different and has different issues, but do any

of you try to maintain a special diet or avoid specific foods

altogether?

-I am taking cholestyramine, urso, calcium and vitamins A & D. Am I

missing anything in there?

-And I hope to God this is not a horribly insensitive question to

ask....but what is the longest anyone out there has survived without

a transplant? Again I know everyone is different and people are

diagnosed having different stages of the disease. Of course myself

and my family and friends all want to know " when? " Are there any

cases of someone having PSC and not requiring a transplant? Or is

that just wishful thinking???

I also found some recent posts interesting regarding having GERD

symptoms before PSC diagnosis. This all started for me over a year

ago with horrible GERD symptoms. They came out of the blue and were

worse than labor pains. My hepatoligist (whom I trust, but he isn't

the most forthcoming guy I have ever met) says there is no

connection. I will still get pain and discomfort in my diaphram

area from time to time, but thankfully it is rare.

I also like the polls that are on this board. I often wonder what

the connection to PSC is. Very interesting!

If you feel like you have any other bits of wisdom or advice for how

to take care of myself, please let me know. This is all new to me.

Okay....that is probably more than enough for now. Thank you in

advance for your responses.

Blessings and good health to you all,

Amy