Re: New here and scared out of my mind -Reply to Suzanna

[Guest guest]

Suzanna,

You have heard from a few of the members and you will hear from a few more...repeat after me...

This is not a death sentence...I was dx in 1995 and I don't have any symptoms of the disease like others have, thank God. I guess I have been one of the lucky ones.

Please tell us more about you and your family, where you're from, etc...we like to share in this group.

Larry, 58 years old, Baltimore, UC and PSC 95, J-Pouch 2007See what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Hi Larry. And many thanks to all of you who replied to my post. I'm

still reeling and trying to process all the information I have gotten

since I was positively diagnosed yesterday. I'm on a pendulum,

swinging back and forth between hope and despair, and passing by

denial somewhere in between.

I could not find any information regarding a 50% possibility of not

needing a transplant. I did see Dr. Chapman's abstract on a study of

3 people, which isn't exactly a large enough group to make such

conclusions. I do see that there are some people who have lived

quite a long time with this disease, but I wonder if these are just

the anomalies. As you can see, I'm a skeptic. I will say that my

doc told me much the same as you all have: it's not a death

sentence, I may not need a liver transplant, I can live a long life

with PSC, etc. My problem is that I cannot find anything anywhere to

confirm this. The studies I've read have been disheartening to say

the least. I'm trying to maintain hope, as best I can. It'll take

some time. Like I said, I'm still digesting this news.

Okay, since it has been requested, here's some info on me. My hubby,

, and I just moved to the Pittsburgh area last month (from the

Philadelphia area). We are living with his parents until we find a

place of our own. As I mentioned before, I have a 3-year-old son and

a 1-year-old daughter. I'd like to have another, but I don't think

I'll be taking that road with this diagnosis. I'm 37 and was

diagnosed with Crohns disease when I was 24, after living with it for

almost 10 years. I had a doctor who apparently could have cared less

about my care and I never asked questions until I had a terrible bout

leaving me about 15 pounds lighter within a week's time. I changed

docs, got the proper diagnosis and treatment and was better within

about 24 hours of taking prednisone. The crohns has been in

remission since. It burns me up that I didn't push harder and didn't

ask questions. I will never make that mistake again. I take my

health into my own hands because of that experience and do not put

100% of my faith in docs anymore. My mom died of colon cancer (she

had polyps). So, it seems there may be some genetic factor in my

family and it worries me that I may have passed this on to my

children. If you cannot tell already, I worry a great deal. Man, if

I could cure myself of that, life might be a whole heck of a lot

smoother for me!

History of the liver stuff? Well, I had " slightly elevated " enzymes

while I was nursing my son. We discovered this when I was applying

for life insurance. They remained elevated until I got pregnant with

my daughter. We monitored it and nothing changed. So, I opted for a

liver biopsy so I could get the go-ahead to get pregnant again.

Liver biopsy only showed mild inflammation. The doc had no idea why

the enzyme values were elevated. And no one seems to know why they

all came back within normal ranges after I got pregnant. They have

stayed within normal ranges since. We discovered a dilated bile duct

through a CT scan or MRI (don't know which) during a visit to the ER

(stomach bug). Followed up with an MRCP, but nothing really came of

it except that I had a dilated liver bile duct. Moved out here, went

to a specialist, and had another MRCP, CT scan, colonoscopy, and

endoscopy (all in the same day). The MRCP and CT scan came back

with " suspicious of PSC " and " findings concerning of PSC. " And the

doc said that this was a positive finding for PSC.

So, there you go. My life in a nutshell.

Sorry so long...

Suzanna

>

> Suzanna,

>

> You have heard from a few of the members and you will hear from a

few

> more...repeat after me...

>

> This is not a death sentence...I was dx in 1995 and I don't have

any

> symptoms of the disease like others have, thank God. I guess I

have been one of the

> lucky ones.

>

> Please tell us more about you and your family, where you're from,

etc...we

> like to share in this group.

>

> Larry, 58 years old, Baltimore, UC and PSC 95, J-Pouch 2007

>

>

>

> ************************************** See what's new at

http://www.aol.com

>

[Guest guest]

Suzanna,

Welcome to the group!! My wife Tina has had UC & PSC for 9yrs and

has just now started to have a few light symptoms. In the last 9yrs

she has graduated from Indiana University Dental School and had our

second doughter who is now 2-1/2. So like so many here have stated

this is not a death sentence. It will stop you in your tracks and

force you to look at your life and your future, but, so can many

things to many other people. Please ask question and feel free to

offer your info to others, this is how the group gathers info to pass

on to everyone. Take your time going over all the info you will find.

Keep in mind as others have said, some of the info on the net is

older.

A question I have for you. Has your Dr's. put you on any medacation

as of yet???

Again welcome,

Jeff

> >

> > Suzanna,

> >

> > You have heard from a few of the members and you will hear from

a

> few

> > more...repeat after me...

> >

> > This is not a death sentence...I was dx in 1995 and I don't have

> any

> > symptoms of the disease like others have, thank God. I guess I

> have been one of the

> > lucky ones.

> >

> > Please tell us more about you and your family, where you're

from,

> etc...we

> > like to share in this group.

> >

> > Larry, 58 years old, Baltimore, UC and PSC 95, J-Pouch 2007

> >

> >

> >

> > ************************************** See what's new at

> http://www.aol.com

> >

>

[Guest guest]

Nope. No meds, though he wants to put me on something to keep my

Crohns in remission. I'm not sure why because I haven't had a

problem keeping it in remission without being on meds. My liver

function values are all within normal ranges, as are my other blood

values. And I'm completely asymptomatic at the moment. I'm just

taking prenatal vits because I'm nursing and citrucil for IBS.

The only other detail that I left out is the duct that's dilated is

not the main one, but one deep inside and it's measuring about 8mm,

and all the others are measuring about 2-3mm. I don't know whether

that's good, bad, or insignificant.

I just made the mistake of looking at the in memoriam page. Why do I

do that to myself?

So, is there anything that I can do to keep my liver healthy?

Obviously, modern medicine cannot help me, but I'm wondering, has

anyone here tried alternative medicine? Herbs/supplements?

Acupuncture? Hypnosis? Visits to fountains? Am I grasping at

straws?

Suzanna

>

> Suzanna,

> Welcome to the group!! My wife Tina has had UC & PSC for 9yrs

and

> has just now started to have a few light symptoms. In the last 9yrs

> she has graduated from Indiana University Dental School and had our

> second doughter who is now 2-1/2. So like so many here have stated

> this is not a death sentence. It will stop you in your tracks and

> force you to look at your life and your future, but, so can many

> things to many other people. Please ask question and feel free to

> offer your info to others, this is how the group gathers info to

pass

> on to everyone. Take your time going over all the info you will

find.

> Keep in mind as others have said, some of the info on the net is

> older.

>

> A question I have for you. Has your Dr's. put you on any medacation

> as of yet???

>

> Again welcome,

> Jeff

[Guest guest]

Hi Suzanna,

Welcome to the group (but sorry you have to be here). As you can see you have

found a very comforting and supporting group of wonderful people. I am one of

the moms here. I found this wonderful group when my son was diagnosed with PSC

and Crohns 6 years ago (hard to believe it has been that long already). We also

live in Pittsburgh. If you need any referrals or anything please feel free to

email me. If anyone has to be diagnosed with PSC Pittsburgh fortunately has

great doctors who are familiar with it.

Joanne (mom of Todd, 21, PSC 01, Crohns 02, tx twice 03, rPSC 05, Diabetes 06,

living life to the fullest 07)

Sent from my Verizon Wireless BlackBerry

[Guest guest]

Just a couple comments. The fact that it's small ducts which are

involved is a good thing for several reasons.

First, the smaller the ducts, the less of the liver will be affected, so

any damage will be confined to a smaller part of the liver... definitely

a good thing!

Second, It means that it's likely to be relatively early stage PSC, so

you could easily go for many years without any symptoms.

Third, there is a variant of PSC called small duct PSC which seems to

have a better prognosis. I can't say that that's what you have since

I'm not a doctor and don't know the specific criteria for that

diagnosis, but you may want to ask your doctor about it.

athan

[Guest guest]

Suzanna,

I am in a very similar situation. I am 39 & the mother of a 3 & 1/2

yr old son. For the last year I have been undergoing tests &

consulting specialists to try to get a diagnosis. On Wednesday, I was

finally given a confirmed diagnosis of PSC. As discouraging as that

is, it was something I expected and it was actually a relief having it

confirmed. I am seeing a liver specialist at Duke University who has

treated a lot of PSC patients, and he told me that living for many

years without problems is the rule, not the exception (when you are

diagnosed early & are not symptomatic). He said a few patients have

gotten sick quickly, but most do not.

My husband and I have had a lot of infertility problems and we adopted

our son. We were applying to adopt a second child last year when my

medical exam revealed the elevated liver enzymes. We put the adoption

on hold at that time, on the advice of my GI doc. One thing the liver

specialist said to me on Wednesday was, " Don't change any of your life

plans or put anything on hold because of this diagnosis " . I mentioned

the adoption & he said, " That's what I meant. Go ahead and adopt if

you want more children. " He said he does not expect this to have a

significant impact on my health for 10 years or more. He offered to

fill out medical forms for our adoption if necessary.

When I was first given a tentative diagnosis about 6 months ago, I

felt very much the way you do - scared & worried that I won't get to

see my son grow to adulthood. It is a hard mental adjustment to make

when you first get diagnosed with a chronic and incurable disease.

But now I believe that I will most likely be able to live for a long

time, and maybe even the rest of my life without needing a transplant.

You never know what kind of medical advances they are going to make in

the next 10-20 years that could offer more hope & treatment options

for liver diseases. And from what I have read, transplants for PSC

have very high success rates.

I am taking Actigall, or the generic form of Ursodial. After taking

it for 6 months, it has brought my liver enzymes back to normal

ranges. Although it has not been proven to help PSC, there is still

research being done and it may turn out to be more beneficial than

they now believe (especially at higher doses). I know a number of

other people on this board are taking it, and it would be worth asking

your doctor about.

Also, you should be taking supplemental calcium, and vitamin D, if you

are not already. PSC hampers the liver's ability to absorb calcium

and fatty vitamins, so we have a higher risk for osteoporosis.

Debbie in NC

> >

> > Suzanna,

> > Welcome to the group!! My wife Tina has had UC & PSC for 9yrs

> and

> > has just now started to have a few light symptoms. In the last 9yrs

> > she has graduated from Indiana University Dental School and had our

> > second doughter who is now 2-1/2. So like so many here have stated

> > this is not a death sentence. It will stop you in your tracks and

> > force you to look at your life and your future, but, so can many

> > things to many other people. Please ask question and feel free to

> > offer your info to others, this is how the group gathers info to

> pass

> > on to everyone. Take your time going over all the info you will

> find.

> > Keep in mind as others have said, some of the info on the net is

> > older.

> >

> > A question I have for you. Has your Dr's. put you on any medacation

> > as of yet???

> >

> > Again welcome,

> > Jeff

>

[Guest guest]

Debbie Rasa wrote:

> he told me that living for many

> years without problems is the rule, not the exception (when you are

> diagnosed early & are not symptomatic).

And in many cases it's true even when you are symptomatic. I was

diagnosed after a few years of pretty severe symptoms, and it still was

16 years 'till transplant, and now that I've had the transplant, I'm not

planning on keeling over tomorrow! Right now I'm concentrating on

getting a really good start on training for the next triathlon. I just

took 4 minutes off my 1000 yard swim yesterday!

athan