I'M NEW AROUND HERE!!

[Guest guest]

Hi. My name is Lynn and I am 42 and I was diagnosed in Oct. 2001

with PSC. I was just diagnosed with Cirrhosis of the liver Oct.

2006. I live in Plainfield, IN. around Indianapolis. I have been

married 21 years and have 2 daughters.

I have had 6 ERCP's, a liver biopsy, and several other scans and

tests. More blood work than you can ever imagine!!

I have never talked to any one else with PSC. So I have lots of

questions for you'all!!-- Like, how were some of you diagnosed? I

gave blood at a parade and found out that way. How long have you

lived with it? I have had it for over a decade, and had no clue.

What are some symptoms you have? Itching...

And those of you that have had transplants, how did you know it

was " Time " ? Were you sick?...

So I don't know if this is what you do with the postings, but I

guess I will learn!

Thanks, hope to hear from you!!

Lynn

[Guest guest]

>

> Hi. My name is Lynn and I am 42 and I was diagnosed in Oct. 2001

> with PSC.

Hi from the bottom of the world in New Zealand.

Welcome to our group you will find so much information and meet so many

amazing people of all ages here.

I am sorry that your liver is getting worse.

It sounds fascinating that you found that you had PSC from a blood test

at a parade - you will have to tell me more.

how were some of you diagnosed? - Coming from a family who just has to

breathe deeply walking past a butchers shop and their already high

cholestrol goes even higher I had been keeping an eye on my lipid level

which was going up and up even though I eat almost a vegetarian diet.

Was put on lipid lowering tablets which did the job wonderfully, but I

had my first LFT which showed high levels, so after 8 months of blood

tests, gallbladder removal, ERCPs, I was diagnosed on MY BIRTHDAY with

PSC a year and half ago. I don't have any inflammatory bowel disease

(or a male in their 30s!!), which complicated getting a diagnoses.

How long have you lived with it? - The Doctor has a 'gut feeling'

hhhaaa which I thought it was funny as he specialises in

Gastroenterology said I could have had PSC for 15 to 25 years!!!

What are some symptoms you have? Fatigue, for a number of years I

tired very easily and was amazed that people could party into the small

hours while I was in bed by 10pm. I feel as if I have a bruise in my

back in the area of my liver. I get an itchy head when I am stressed

(not sure if thats PSC related)

Welcome and best wishes who 13 years old than you.

[Guest guest]

Hello Lynn,

First off, WELCOME!!

I was diagnosed in 2001 as well. My brother found he had an arterial

blockage, and his Doc told him to tell all his siblings to have

bloodwork and stress-tests done. That's when they first noticed the

elevated levels. Of course, the Gastro I first went to watched my

levels steadily rise for over two years without doing anything. I

finally took my 2+ years of results to my PCP and he immediately

referred me to his buddy from school (who just happened to be on the

transplant team at a local transplant center). I had a Biopsy, MRCP,

ERCP, Sigmoidcolonost-something or other, with biopsies. I guess one

could consider me asymptomatic -- I only suffer from fatigue and

moderate itching at this point. My sleep is changing -- can't get

to sleep until later and later, usually well after midnight -- hard

to get up early for work. I read where many have to travel far to

see their transplant team. I guess I'm fortunate that I have 3

different transplant centers within 30 miles of my house (Richmond).

IMHO, your first post was fine. I'm relatively new here as well (Sep

2006), but I can tell you there is support and knowledge overflowing -

- you've come to the right place. Once again, welcome.

Stuart (Va)

PSC 2001

[Guest guest]

Hey Stuart, Thanks! This is awesome! I too saw my G I Dr. for 5 years and had ERCP's every year, and just summer of 06 was sent to my Herpetologist/ Liver team. What's MRCP? Yeah, fatigue is bad for me, and itching is out of control. I can tell when I need an ERCP, because my itching gets real bad. I didn't think about me going to bed at/ after midnight and barely staying awake at work was the fatigue part of it, but makes sense. Are you on any meds at all? Urso? Do you take anything for itching? Are you thinking about going to Denver this April? I think I am overwhelmed!! Like I have never met anyone with PSC, so this is crazy to me!! Do you have any liver damage yet? Sorry about all the questions, but this is awesome!! Lynn"Stuart (Va)"

wrote: Hello Lynn,First off, WELCOME!! I was diagnosed in 2001 as well. My brother found he had an arterial blockage, and his Doc told him to tell all his siblings to have bloodwork and stress-tests done. That's when they first noticed the elevated levels. Of course, the Gastro I first went to watched my levels steadily rise for over two years without doing anything. I finally took my 2+ years of results to my PCP and he immediately referred me to his buddy from school (who just

happened to be on the transplant team at a local transplant center). I had a Biopsy, MRCP, ERCP, Sigmoidcolonost-something or other, with biopsies. I guess one could consider me asymptomatic -- I only suffer from fatigue and moderate itching at this point. My sleep is changing -- can't get to sleep until later and later, usually well after midnight -- hard to get up early for work. I read where many have to travel far to see their transplant team. I guess I'm fortunate that I have 3 different transplant centers within 30 miles of my house (Richmond). IMHO, your first post was fine. I'm relatively new here as well (Sep 2006), but I can tell you there is support and knowledge overflowing -- you've come to the right place. Once again, welcome.Stuart (Va)PSC 2001

[Guest guest]

Hi Lynn My son was diagnosed at 11. Last year at 19 he had his transplant. He did not feel well for the whole 8 years with constant pain. Since he had his transplant he has gone to college, getting A's and has his own apt and feels fine. Good luck, stick with us. MartiLynn wrote: Hi. My name is Lynn and I am 42 and I was diagnosed in Oct. 2001 with PSC. I was just diagnosed with Cirrhosis of the liver Oct. 2006. I live in Plainfield, IN. around

Indianapolis. I have been married 21 years and have 2 daughters. I have had 6 ERCP's, a liver biopsy, and several other scans and tests. More blood work than you can ever imagine!!I have never talked to any one else with PSC. So I have lots of questions for you'all!!-- Like, how were some of you diagnosed? I gave blood at a parade and found out that way. How long have you lived with it? I have had it for over a decade, and had no clue. What are some symptoms you have? Itching...And those of you that have had transplants, how did you know it was "Time"? Were you sick?...So I don't know if this is what you do with the postings, but I guess I will learn!Thanks, hope to hear from you!!Lynn __________________________________________________

[Guest guest]

>

> Hi. My name is Lynn and I am 42 and I was diagnosed in Oct. 2001

> with PSC.

Lynn,

Welcome to the group. You will find all your questions answered here

by someone. Everyone is most helpful and sympathetic.

I am now 63 years old and was diagnosed in April 04 after a routine

blood test came up with high LFT's. I could hardly take the doctors

seriously as I was very well at the time. Not long afterwards I

started having very painful episodes which I now know to be

cholangitis attacks.

My hep put me on daily antibiotics a year ago and I have been well

ever since. I don't take urso as it is not approved for PSC in

Australia and my Hep refuses to prescribe it for me. He did say he

might later if I start having blockages. I do take milk thistle

tablets and fish oil capsules, as well as vitamins.

I believe I have had this disease for at least 10 years as I remember

some attacks I had back then when I didn't know what it was and didn't

see a doctor.

I was wondering if you have fevers and chills when you get the pain

and if you have jaundice?

Regards

Norma

[Guest guest]

Hello Lynn, fellow Hoosier:

I am from n IN and been to Plainfield several

times. First, I am sorry to hear of your diagnosis.

I remember all too well my diagnosis. It seems like

yesterday. Mine was 1993 and we were expecting our

first child. I was 36. I had always known I had IBD,

but symptoms got worse that year. I started dropping

weight quickly; followed by severe itching on my feet;

then jaundice. n is not blessed with specialists

in this area, so nearly a year went by before I

finally received a diagnosis. I ended up pulling all

my records locally and sought a second opinion @

Caylor Nickel in gastoenterology. He suspected

Hepatitis C but eventually sent me to IU who performed

the ERCP and the diagnosis. My wife being a

pharmacist, I was convinced I might have liver cancer,

since I had a grandparent die of bile duct cancer in

1986. I thank the lord I sought out the second

opinion, at least I could then put a name to it. I

will be 50 in a week and have had the disease 13

years. Fatigue, and occasional right quadrant pain

are my biggest complaints, but they have been better

lately. I take actigall, wellbutrin,folic acid and

have found myself better able to cope with the fatigue

& quadrant pain. For the last 6 weeks I have been

taking Omega 3 fish oil, probiotics, noni juice,

Vibe(multiple vitamin drink, & milk thistle. I

haven't felt this good in several years. I am anxious

to see my blood test results in Feb when I return to

IU. Sorry for the long post, best wishes.

Phil

--- Lynn wrote:

> Hi. My name is Lynn and I am 42 and I was diagnosed

> in Oct. 2001

> with PSC. I was just diagnosed with Cirrhosis of

> the liver Oct.

> 2006. I live in Plainfield, IN. around

> Indianapolis. I have been

> married 21 years and have 2 daughters.

>

> I have had 6 ERCP's, a liver biopsy, and several

> other scans and

> tests. More blood work than you can ever imagine!!

>

> I have never talked to any one else with PSC. So I

> have lots of

> questions for you'all!!-- Like, how were some of

> you diagnosed? I

> gave blood at a parade and found out that way. How

> long have you

> lived with it? I have had it for over a decade, and

> had no clue.

> What are some symptoms you have? Itching...

> And those of you that have had transplants, how did

> you know it

> was " Time " ? Were you sick?...

>

> So I don't know if this is what you do with the

> postings, but I

> guess I will learn!

>

> Thanks, hope to hear from you!!

> Lynn

>

>

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