Re: Nosey Biddy

September 13, 1999

,

I am married to Phil (56) who is a PSCer. He was diagnosed 12/98

but we suspect he's probably had this disease over 10 years. He had

4 cholangitis attacks a month apart at first but hasn't had one since March.

He fatigues easily but still square dances and is Vice President of our

Square Dance association with 80 clubs and 5000 members. He is aiming

for us to be President next year (hope he holds out to achieve that goal).

We were married in April of 1997 (we met square dancing) I have 2 grown

children with 5 grandchildren, making Phil an instant Grandpa. My

family all live in Iowa, Illinois & Wisconsin. Phil has a son

that is finishing his last year at Southern Calif Univ. when he finishes

he'll get both his bachelors & masters degrees (very intellegent kid

but not to smart - he doesn't communicate with his very sweet Dad very

much). We are the new owners of a kitty named Spunky who is like

a second skin on Phil. She has really helped his spirits and mine too except

she won't have much to do with me when Phil is around. Phil is on

disability since he lost his job the month before being diagnosed and he

gets too fatigued (in an unscheduled manner) to be able to get a job.

He is in the process of getting on a transplant list at UCLA due to the

fact that his ducts are so scarred they can't do anything with them and

he was getting reoccurant infections. His liver has not cirrhosed

yet. My heart bleeds for you having a child with this disease I don't

know how you bear it.

Oh, one more thing Phil has had UC for 30 years and gets pain inbetween

his shoulder blades and has cramping in his hands.

Hope this helps.

Peg

WEBSTER wrote:

Hi

Nosey Biddy! This is

nosey . I am really trying to form pictures in my head of each

of you so that I can better remember each story by the "face" that goes

with it. If any of you would not be offended by my asking, I would

love to hear from and about each of you - how old you are, priorities in

your life -raising kids, how many, still working, what kind of job, retired,

how long you've had PSC, things like that - just some details to help me

remember each of you. Because my son is only 7, I've formed the idea

in my head that he will continue to live a normal healthy life for the

next ten years. I'm very interested to hear from all of you what

you think realistic expectations are. How many of you had symptoms

before diagnosis? How many of you found out by accident from bloodwork?

How soon did you experience symptoms after diagnosis (if you didn't have

them beforehand). Do symptoms usually happen in any kind of order?

Itching, then URQ pain, etc? Or is it different with every case?

Do children show any symptoms or is it usually diagnosed through bloodwork,

with symptoms appearing much later? I know I'm just full of questions,

but you know how it goes: "Inquiring minds want to know!" (I

think that was from a commercial for The Inquirer.) Thanks,

folks!

Had

Enough!Hello All, It

has been over four weeks of itching now and I can't stand it any more.

I don't know how some of you cope with this but the itching is driving

me crazy. I have been on Questran for a week now and have noticed

no change. I have itching where I thought it was impossible to itch,

my eyes, my head, everywhere. My research nurse said that she has

a number of PSC patients where when they DON'T itch, it's a big deal; that

they itch more often than not. I don't think I can handle that.

I already have large patches of broken blood vessels from scratching and

a number of patches where a rash has developed from scratching. It

is now at the point where some of my clothes are irritating me.Maybe

I'm overreacting because I had very little sleep last night between scratching

and getting up with the baby. I'm just waiting for my GI's office

to open this morning to see if I can get in today (unlikely since specialists

often require several weeks notice for appointments). I can't get

in to see my GP until Friday. I hope I don't go crazy by then. Thanks

for listening, Debbie,

UC(1988), PSC (1989)

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September 14, 1999

,

I am 54 years old. I live in Manchester, NH. I have two children,

both married, who live in Silver Spring, Md. (daughter, son-in-law &

3 year old grandson) and in Tulsa, OK (son, daughter-in-law). I am

a marriage and family therapist, and before transplant I was on the faculty

of Antioch New England Graduate School in Keene, NH. Now my practice is

minimal, but keeping it going requires a lot of time.

I love to knit, and I belong to a knitting guild in Derry, NH.

During my hospital stays I always bring knitting with me, and I even knit

just before the ERCP's (the knitting calms me down). I'm into making

socks for family members and friends these days (holiday gifts).

I have found that knitting under the influence of benedryl is not productive

, however <g>.

I was diagnosed in '85 at the age of 39. My son was 17, and my

daughter was 15. Misha, my daughter, just mentioned to me that for

half of her life I have been dealing with the symptoms of the disease (especially

the tiredness), and that she hopes that after transplant, she and I can

plan an activity (even just shopping), and I won't fink out in the middle

of it.

I think I've posted the rest of my story about PSC here before.

But if you want to know more about that, just ask.