Re: New to the list, scared, lots of questions

[Guest guest]

Welcome to the group. As many will state, we're sorry you and have

to be here. I am 32 and recently had a liver tx (transplant) in November.

I was dx (diagnosed) with UC (ulcerative colitis) in 87 and dx with PSC in

99. I probably had symptoms for about 3-4 years prior, but finally decided

to get it checked out. Fatigue was what had me get full blood work. My

alk phos came in at 850+ (don't remember exact number) so I was sent to a

hep/GI, which is where I was dx.

You will find many in this group who have lived with the disease for around

5-10 years (although official dx came later) with some well over 10 years.

The next thing you will find is how PSC can affect people differently. The

most common though is itching and fatigue. Another thing you will most

certainly be told is that you shouldn't stop living so to speak because of

it. Your dr may or may not be able to give you a guesstimate as to when to

expect a tx using ERCPs, MRCPs, biopsies and other tests. Unfortunately,

that is all it is. During my tx review, my hep guessed about 5 years for

me. The surgeons said it was premature and frankly wrong for him to put a

timetable on it because it progresses differently for just about everyone.

You will find a wealth of knowledge (not from me though - I am still a

newbie and learning the ropes), love and support. Give us an overview of

s test results if you get a chance (blood work, ERCP - if done,

MRCP,etc).

If you are able to archive past messages, look up " supplements " (I believe

that is it) that help reduce the symptoms and can prolong the inevitable

(tx). lives in Michigan and will probably chime in shortly. I am

not sure where she lives or what hep/GI she uses.

Take care of yourself as well as . If you have any questions, fire

away. I say that, because more than likely I won't know the correct

answer. I like to keep the experts on their respective toes (Tim R. Arne,

Aubrey, Andi, Barb, Barby, Maureen, ) my fingers are getting tired and

I should probably get some work done............................

Darin

[Guest guest]

--- and Shea

wrote:

> ... My husband is and he was just diagnosed with PCS.

> He is 31 years old. He didn't have any symptoms other

> than abnormal liver enzymes (Alkaline Phosphatase) so this

> diagnosis really threw us for a loop.

,

Welcome to the group, sorry it is under these circumstances.

Your story is very familiar to us all and 's situation

similar to my first abnormal blood tests. I was 33 at the time,

although additional test were run, no diagnosis was made for

another 9 years - I just kept having high liver enzymes on every

blood test and Red Cross said I shouldn't donate blood because I

might have something infectious.

22 years and several surgeries later I have a new liver and am

feeling fine and still working with the same company I was with

when my high LFTs were found. It is scary having a chronic

disease for which there is no proven treatment, let alone a

cure. But PSC is usually a slowly progressing disease, and I

think it can be further slowed by doing things that make it easy

on your liver.

The one thing that we have come to realize is that there is no

need to turn your life over to PSC. Make the most of your life

with . Think of PSC as a wake up call that some people

don't get until they are much older. We all have a limited time

on this earth - use it wisely.

Tim R

P.S. I'm from Michigan too. I've been in Ann Arbor for 26 years.

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[Guest guest]

,

A heartfelt welcome! I am 31 as well. My hsuband Steve and I

have 2 children 4 almost 5 year old and a 16 month old. I had

elevated tests for about 6 months and then got pregnant. During

which time everything returned to normal. They have since returned

to their abnormal state. I have enjoyed several ultrsounds, a liver

biopsy, MRCP and an ERCP. Right now my dx(diagnosis) is maybe

probably PSC but we don't know for sure so lets just wait and see. I

have no symptoms at this time. It is scary at first but it gets

easier. There are good days and bads days. There are days you cry

and days you don't even think about it. One blessing among many

about PSC is that it is a process and thus gives you time to prepare

and educate yourself. It is a journey. Another blessing is that we

all appreciate the little things much more and for the most part are

healthy enough to get out and enjoy. Kind of like having the best of

both worlds. Many times that appreciation doesn't come until a

sickness has really set in. Ask any thing you want here. Someone

will have an answer. Vent away! THis group is the one place I can

come get everything off of my chest and everyone here knows exactly

how I feel. Hang in there and let us help you carry this load! Good

to have you!

Jen

[Guest guest]

Welcome and any others I have missed since I

haven't been posting or reading much lately. See my

post to a lot pertains to your situation and

handling the shock of the PSC diagnosis. Yes, you do

want to be in the best hands possible. I've been in

the group since almost the beginning and there a some

in the group that are struggling much more than they

should if they had good caring doctors that really

understand PSC.

Peg

=====

Peg,wife of Phil(58), UC 30 yrs, dx PSC 12/98, Listed UCLA 3/2000,status

3,living in LA, CA suburbs, 2 kids, 5 grandchildren, 2 cats

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[Guest guest]

Hello and Wecome and !! Sorry you

had to come looking for us, but, we are here and

willing to help support and comfort you through this

journey.

Where in Michigan do you live? I reside in Midland,

but was born and raised in Saginaw.

What doctor are you seeing that gave you the dx?

Where do you plan to go next?

I've had PSC dx for nearly 5 years, with just the last

year being symptomatic. My LFT's were how my dx was

made. I also had UC for 16 years (I am 40 something),

and had it removed 2 years ago due to dysplasia.

Except for a few minor irritations, things are going

well for me.

Looking forward to hearing more about you and .

=====

in Michigan (Dx UC 1984, Dx MISSING COLON 1999, Dx PSC 1997, PSC symptoms

2000)

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[Guest guest]

,

and I live about 20 miles outside of Detroit. Our family is mostly

in this area as well. Our daughter, Madeline, is 14 months old and really

our first baby is our chocolate lab, Darby.

The doctor that we are seeing is Dr. Stuart Gordon, from Beaumont

Hospital in Royal Oak. We plan on also going to the University of Michigan

and probably Henry Ford Hospital in Detroit.

So far, has had an ultrasound, liver biopsy, cat scan. His AP's

have been elevated on and off for about 2 years. Initially, our fertility

specialist who we were seeing to concieve our daughter alerted us to the

abnormal LFTs. He had additional bloodwork that was okay. Then he received

a letter from the Red Cross as well. His latest results back in December

were AP's: 390, AST 96 and ALT's 153. Initially his internist blew the whole

thing off and attributed it to drinking (which rarely drank more

than one or two times a week anyway). We decided to seek a Hepatologist on

our own. We have a meeting with him today to discuss everything but he has

indicated that he believes it is PCS. Next we will do an ERCP.

I can't tell you what a relief it has been to find all of you. It is so hard

to explain to family what this diagnosis feels like. It's hard to even let

all of this sink in ourselves. We are still trying to understand what all of

this means.

Thank you for writing...glad to have another Michigander here for support.

I'm sure that I will have many questions for all of you in the weeks to

come.

~

[Guest guest]

Jen,

Thanks for the warm welcome. One thing that disturbs me is the number of

young people that seem to have this disease. Lately, I feel very robbed of

having a normal family and life as a young family. One of my friends just

told me she is pregnant and it hurt really bad because we were just getting

ready to try for #2. Now we are so unsure. thinks that we should

proceed with life as usual but in my heart I am scared about exposing

another child to pain if something were to happen to .

How do you cope with two little children? It seems like most people here

have said that they take much more time to enjoy life and really live it to

its fullest and that is one thing that I find to be true. and I

have never felt closer and our married relationship seems to be at its best.

I just wish it didn't take something like this to make that happen

Anyway, I guess that I am rambling but what I really wanted to say was thank

you for your support and just knowing that there are others out there who

are going through the same thing helps.

~

[Guest guest]

HI, I am seeing a Hep at the Henry Ford Hospital, so,

sometime in the future it is possible that we will be

able to arrange a meeting...well, after you get to

know me that is.

=====

in Michigan (Dx UC 1984, Dx MISSING COLON 1999, Dx PSC 1997, PSC symptoms

2000)

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