New here and scared out of my mind

[Guest guest]

Well, the subject says it all.

Hi, I'm Suzanna and I've just (today) been positively diagnosed with

PSC. I'm 37 and have 2 children (ages 3 and 1) and cannot get it out

of my mind that I probably won't live to see them get their driver's

license. I think I'm making myself physically ill just thinking

about it.

From the little research I've done online, it seems that I have about

9-11 years before I die or need a liver transplant. And I don't even

know whether those will be good years or not. And then, if I do

manage to get the transplant, it seems there's only a 60% survival

rate at 2 years post transplant??? Is the prognosis that bad?

So many things are reeling through my head right now. I had hoped to

have a third child, but I refuse to bring a child into this world

knowing it will be motherless before he/she graduates high school.

My doctor says that I should continue making decisions like I was

never diagnosed -- to not let this factor in. He claims that I may

not even need a liver translplant and that people with PSC can live

years and years with no problems. But that's not what I've been

reading in my research. I don't know what to think or feel anymore.

Currently, I am symptomless. They discovered a dilated bile duct

during a test (MRI or CT scan) I received when I was in the ER for a

nasty stomach bug. All blood values are within normal range. The

dilated bile duct is all I have right now.

Anyone have any recent data on long-term prognosis? Also, it seems

the Mayo Clinic is the top of the line in medical care for PSC -- is

that correct? If so, which one, Florida, Minnesota, or Arizona?

Thanks so much for all your help. I really need it right now.

Suzanna

[Guest guest]

Suzanna,

I am sorry about your diagnose but very

happy you found us. This forum has really helped me out in the phase you are

going through now.

First of all, don't believe everything you

read on the internet. Most research you will find on the internet is somewhat

outdated. Most of the research is done before ursodeoxycholic acid (UDCA)came around

to help keep liver function test values normal, and all research is before the high

dose UDCA. It is not clear yet if UDCA helps prolong the time to transplant but

thing look somewhat less bleak than a few years ago. There are a few people on

this forum who have been diagnosed more than two decades ago and are in good

shape. This is especially true for people who were diagnosed asymptomatically

like you (and me).

I don't have numbers here, but I doubt

that 60% survival rate two years after transplant is right. I am pretty

positive it is way better than that. I will try to look it up for you. If you

are looking for more material please visit www.psc-literature.org, it has tens

of thousands of articles that are related to PSC.

The Mayo clinic is definitely the best

place to go, especially the one in MN. The world expert on PSC (Dr.

Lindor) practices there.

There are probably people who disagree

with your doctor, but I agree. Yes, there is a chance things turn sour, but

that is not a reason to stop living the live you want to. Uncertainty is very

hard to cope with, and not dealing with PSC will not make it go away, but

sitting down and pouting is not the right attitude either.

If I may I would recommend you read

" to the edge and back " from Klug. He is a (former) PSC patient

who had a transplant and went on winning the bronze medal at the winter Olympics

in snowboarding.

I am sorry I have to get back to work. ;-)

Chaim Boermeester, Israel

From: [mailto: ] On Behalf Of zus888

Sent: Thursday, November 08, 2007

11:24

To:

Subject: New here

and scared out of my mind

Well, the subject says it all.

Hi, I'm Suzanna and I've just (today) been positively diagnosed with

PSC. I'm 37 and have 2 children (ages 3 and 1) and cannot get it out

of my mind that I probably won't live to see them get their driver's

license. I think I'm making myself physically ill just thinking

about it.

From the little research I've done online, it seems that I have about

9-11 years before I die or need a liver transplant. And I don't even

know whether those will be good years or not. And then, if I do

manage to get the transplant, it seems there's only a 60% survival

rate at 2 years post transplant??? Is the prognosis that bad?

So many things are reeling through my head right now. I had hoped to

have a third child, but I refuse to bring a child into this world

knowing it will be motherless before he/she graduates high school.

My doctor says that I should continue making decisions like I was

never diagnosed -- to not let this factor in. He claims that I may

not even need a liver translplant and that people with PSC can live

years and years with no problems. But that's not what I've been

reading in my research. I don't know what to think or feel anymore.

Currently, I am symptomless. They discovered a dilated bile duct

during a test (MRI or CT scan) I received when I was in the ER for a

nasty stomach bug. All blood values are within normal range. The

dilated bile duct is all I have right now.

Anyone have any recent data on long-term prognosis? Also, it seems

the Mayo Clinic is the top of the line in medical care for PSC -- is

that correct? If so, which one, Florida, Minnesota, or Arizona?

Thanks so much for all your help. I really need it right now.

Suzanna

[Guest guest]

Suzanne-

Welcome to this wonderful group. You have found an INVALUABLE source or comfort and support. I would suggest going to the PSC partners website and reading the newsletters. Several of us have kept online journals or blogs regarding themselves/spouses/children.

While you are symptomless now, this is GREAT!!! In reality you could have 20 years of no symptoms or you could have less. No one knows. That is how PSC works. The good news is, routine blood work can monitor.

Ask your questions, you will get answers. Someone will pipe in.

My brother is currently on the transplant waiting list, been listing for about 6months now. I keep a blog of things that happen in his life and around the house. Lots of humor that is how we as a family deal with it, he lives with me so I am his primary care takers, you can read it at www.savedusty.blogspot.com.

A couple other blogs I read are Carl's, his wife is a member of this group to, he has had an amazing recovery process after transplant, his blog is http://carlanddawn.blogspot.com/

, and Josh Carpenter's is http://www.joshcarpenter.blogspot.com/.

on this group had his liver transplant a few months ago and is doing wonderfully!!! As there are many on here that have.

Don't feel like you have been given a death sentenence, you have not. Yes, it is scary-but you have found the best resource you could have-this group. Make sure you have a doctor you trust, that is very important as well. My brother's doctor has gone above and beyond anything we could have asked for.

Welcome to the group Suzanne!!!

-

Brother, , 31, UC & PSC

Well, the subject says it all. Hi, I'm Suzanna and I've just (today) been positively diagnosed with PSC. I'm 37 and have 2 children (ages 3 and 1) and cannot get it out of my mind that I probably won't live to see them get their driver's license. I think I'm making myself physically ill just thinking about it. From the little research I've done online, it seems that I have about 9-11 years before I die or need a liver transplant. And I don't even know whether those will be good years or not. And then, if I do manage to get the transplant, it seems there's only a 60% survival rate at 2 years post transplant??? Is the prognosis that bad? So many things are reeling through my head right now. I had hoped to have a third child, but I refuse to bring a child into this world knowing it will be motherless before he/she graduates high school. My doctor says that I should continue making decisions like I was never diagnosed -- to not let this factor in. He claims that I may not even need a liver translplant and that people with PSC can live years and years with no problems. But that's not what I've been reading in my research. I don't know what to think or feel anymore. Currently, I am symptomless. They discovered a dilated bile duct during a test (MRI or CT scan) I received when I was in the ER for a nasty stomach bug. All blood values are within normal range. The dilated bile duct is all I have right now. Anyone have any recent data on long-term prognosis? Also, it seems the Mayo Clinic is the top of the line in medical care for PSC -- is that correct? If so, which one, Florida, Minnesota, or Arizona?

Thanks so much for all your help. I really need it right now.Suzanna -- Some of my crazy lil' blogs & website....

www.ancestralroots.blogspot.comwww.savedusty.blogspot.comwww.mycrazylilworld.blogspot.com

www.mtmcreationsonline.com

[Guest guest]

Hi,

I can certainly understand how you feel, but take heart! It's not

necessarily as bad as it sounds! I was diagnosed in '92 and finally had

a liver transplant about six months ago. In the time between diagnosis

and transplant I got married, had two kids and started a career. I did

finally have to quit work, but coming home gave me more time to spend

with my kids. I also kept as busy as I could, putting an addition on to

the house (which I am just finishing up now), and keeping active in my

church. The last few months before transplant were pretty rough... I

was feeling pretty miserable most of the time, but I still managed to

keep active. Two days before my transplant I put up a bunch of shelves

in the laundry room!

After the transplant, I felt so much better! I was only in the hospital

for a week, and within a month post transplant I was tilling my garden

(though I probably wasn't really supposed to! I felt so good and wanted

a garden this year!)

Of course I've been extremely blessed. It doesn't always work out this

well for people with PSC, but then it doesn't always work out well for

people who don't have PSC either! Anyone could be hit by a bus

tomorrow, and simply knowing you're at risk for a certain kind of

problem doesn't mean you can't have a good life. In fact it allows you

to plan and prepare for it so, in a way, you're ahead of all those

others who go along blithely expecting everything to be wonderful all

the time!

That's my philosophy anyhow!

athan

[Guest guest]

Suzanna,

I agree with Chaim, you should ignore much of the doom and gloom you

find about PSC on the internet. Much of that is based on people

diagnosed with symptoms caused by advanced PSC. You are asymptomatic

and have a much better prognosis. Dr. Chapman, the English gruru on

PSC, estimates 50% of PSC patients will not progress to end stage

liver disease (ESLD) and the need for a transplant during their

lifetime. In otherwords they will die with PSC not because of it.

Given your diagnosis you are of course contemplating all the

possibilities. But don't select only the negative, living in fear of

what might never happen. Chose instead to embrace life the best you

know how and live it to the fullest.

PSC progression varies greatly. Even though you are thinking about the

need for a tranplant now, I doubt that you will be seriously

considering one for twenty or thirty years. Time enough to see your

children reach adulthood and start their own lives. If you want to

look at the latest data for transplants in the US go to:

http://www.optn.org/latestData/viewDataReports.asp

Where you can select from a range of different types of data.

My personal experience with PSC has been high liver enzymes durig a

routine physical when I was 33, a PSC diagnosis when I was 41, liver

transplant at 51, recurrent PSC and two transplants this year at 60.

So while there have been times when I've had to slow down due to PSC,

I have tried to live to the fullest and make choices that support a

positive outlook.

Tim R, tx 4/4/98, 6/19/07 & 7/7/07

[Guest guest]

Welcome Suzanna,

I am sorry to hear that you are going through the rollercoaster ride

of PSC. However you have found THE best support group! This is a

wonderful board to get those much needed (virtual) hugs. It is also a

wonderful place to put everything into perspective. You will find

people who find out they have PSC and live with it for YEARS! Others

who need to go through the transplant process fairly soon after

hearing about their condition. It may not feel like it now, but

knowing that you have PSC at an early stage is a good thing. It gives

you time to research what this condition is while you are healthy. My

husband was 22 when they told him he had PSC. It was really rare at

that point and he was young and basically put it on the back burner

until 10 years later when it reared its head. Now I would not

recommend handleing the PSC the way he did, however. I KNOW this is

easier said than done... but I suggest you learn the ins and outs of

PSC, but do so in a way that doesn't freak you out. Is there a

possiblity that you may need a transplant? Yes But you can not live

your life waiting... Is there a small chance you won't see your

children drive, maybe. But there is a very REAL chance you will.

I understand this is very hard, but once your life returns to

something called normal you will find that you can get through this.

God Bless, and know that you are not alone.

Litsa

Wife to Darryll UC/j-pouch, PSC (1994) Transplant 01/03/07

[Guest guest]

>

> Welcome Suzanna,

> I am sorry to hear that you are going through the rollercoaster

ride

> of PSC.

Hi Suzanna

Don't panic and welcome to the PSC group, they are fantastic (

will find a scientific paper to answer every question, Arne will tell

you to drink lots of water, the Mums with children with PSC will

astound you with their comitment, Patrica will come up with so many

papers on liver/IBD papers, the committee that organises the yearly

conference make it better each year.....and so many more amazing

individuals).

When I was diagnosed 2 and a half years ago, I asked the specialist

if

he could guess how long I had had PSC and he said he would have not

been surprised if I had PSC for at least 15 t0 20 years.

I am old enough to be your Mum (mid 50s) with a lovely husband and

4

grown up children. Over the years I was always tired (sounds

familiar?)

and needed to be very well organised (a hassel for a naturally

spontaneous person) and did things like taking the children down to

the river for a swim was more important than tidying up the house

etc, so without even knowing I had PSC I adapted.

I have reasonably high LFTs, but apart from fatigue I am so lucky not

to have any other symptoms.

In a way you are lucky that you know you have this disease and can

suit

your lifestyle. I know I used to get cross seeing what other

people were achieveing and I didn't have the energy to do 'great

things', but I would shrug and mutter about individual differences.

Another thing, since being diagnosed I have found if you say you

have a

Bile Duct Disease you get a better response than saying you have a

Liver Disease, you get suspicious looks as if you are suffering the

consequences of boozing and living life to the extreme, when nothing

could be further from the truth...grin...

Best wishes and welcome

from the bottom of the world in New Zealand

[Guest guest]

Suzanna, I know how frightened you are. When I first was told my

husband would need a liver transplant in 5-10 years, I almost hit the

floor. The first thing I did was get on the internet, which just

freaked me out more. When we were sent to see the hepatologist for

the first time, he said, " STAY OFF THE INTERNET " . So I did for the

next few years until my husband had his j pouch surgeries and started

getting more symptomatic. That is when I found this support group

which has helped me through so much. My husband had his liver

transplant on November 18, 2006 and it doing wonderfully. It has

always helped me to hear the positive stories of people who have gone

on to do amazing things post transplant. athan here is quite

amazing and little Fox is just a miracle. There are also many

others who have lived years without the need for a transplant. It

will be okay. Take your medication, get regular blood work, and live

your life. My husband and I have a wonderful 3 year old daughter

that we were blessed with. She has been what has given us both hope

through it all.

wife of

UC & PSC 2000 J pouch 2004 Tx 11-18-06

[Guest guest]

-----Original

Message-----

>>>>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.

You can’t find

anything to confirm this? I don’t understand

what kind of confirmation you’re looking for ..…..

group members are living proof! What better confirmation

could you find?

>>>>And no one seems to know why they all came back within

normal ranges after I got pregnant

That’s

easy……the baby’s liver was doing the job for both of

you!

>>>>I just made the mistake of looking at the in memoriam

page. Why do I do that to myself?

Looking at the Memorial

page is not a mistake and everyone should do it on a semi-regular basis. The people pictured there are the real

heroes of our fight against PSC.

Every single one of them lived life to the fullest every single day. And now, in the afterlife they shine,

reminding us why we fight for a cure. In no way can you (or anyone else)

take what happened to them personally, each had their very own PSC devil to fight. One of the things we know for sure is –

PSC is different for every patient and what may happen to one - most often

doesn’t happen to another. Please look at all the other group pictures

– everyone is smiling! Young,

old, they are all smiling, that’s not a mistake. We’ve found something a lot of people

will never understand or appreciate – life is good, make the most of it!

>>>>Obviously, modern medicine cannot help me

Good grief woman what

web sites have you been reading? Stop now, you’re getting all sorts

of really bad, misleading information! Yes of course modern medicine can help you, it already has (you’ve been diagnosed early.) Varices can be banded, bile ducts can be

opened, blood pressure can be lowered and *IF*

you need a new liver, you can get one.

The miracles that modern medicine can work, is too long to list.

Suzanna, here is your

homework assignment for the weekend – go out, have

fun with your family and don’t think about PSC for a couple of days. Your LFT’s are normal, your Crohn’s

is in remission and you don’t have any symptoms – life is good –

kiss your babies and enjoy it! Keep in mind that *If*

you need us, over 1000 people can jump to your aid with just the slightest touch

of a keypad. Stop reading those

other web sites – they don’t know what their talking about.

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

[Guest guest]

I want to thank EVERYONE who was so kind to respond to all of my

posts. As you can see, I was freaking out, which is something I have

a tendency to do upon first receiving scary news. I did see my

doctor for a consultation so that I could discuss the results

further, as well as my fears. (As a side note, he was CLEARLY not

pleased and was borderline rude -- no, he WAS rude -- but he warmed

up after several minutes.)

He has convinced me that I do indeed have PSC (MRCS and CT scan

showed beading and several areas of strictures and dilation above).

It's currently only affecting the small ducts -- several of them. He

assured me that I will not be dying anytime soon and that I most

likely will not need a liver transplant because most PSC patients do

not need one. Naturally, he cannot guarantee this, but it's where

he'd place his bet. Like so many of you have said, he reiterated

that I should go on and live my life without worry about PSC. Easier

said than done because if I could control my worry -- my life, my

gut, well...everything would be so much better! He has referred me

to a hepatologist for follow-up.

I do feel better about the situation, though I'm still not

comfortable with it. I realize that there is nothing that I can do

at this point to slow or stop the progress of the disease. So, I

might as well just get over it and move on. I'll keep trying to

remind myself of that.

Again, I really appreciate all the responses I have gotten here. You

all are a great bunch!

Suzanna

>

> Well, the subject says it all.

>

> Hi, I'm Suzanna and I've just (today) been positively diagnosed

with

> PSC. I'm 37 and have 2 children (ages 3 and 1) and cannot get it

out

> of my mind that I probably won't live to see them get their

driver's

> license. I think I'm making myself physically ill just thinking

> about it.

>

> From the little research I've done online, it seems that I have

about

> 9-11 years before I die or need a liver transplant. And I don't

even

> know whether those will be good years or not. And then, if I do

> manage to get the transplant, it seems there's only a 60% survival

> rate at 2 years post transplant??? Is the prognosis that bad?

>

> So many things are reeling through my head right now. I had hoped

to

> have a third child, but I refuse to bring a child into this world

> knowing it will be motherless before he/she graduates high school.

> My doctor says that I should continue making decisions like I was

> never diagnosed -- to not let this factor in. He claims that I may

> not even need a liver translplant and that people with PSC can live

> years and years with no problems. But that's not what I've been

> reading in my research. I don't know what to think or feel

anymore.

>

> Currently, I am symptomless. They discovered a dilated bile duct

> during a test (MRI or CT scan) I received when I was in the ER for

a

> nasty stomach bug. All blood values are within normal range. The

> dilated bile duct is all I have right now.

>

> Anyone have any recent data on long-term prognosis? Also, it seems

> the Mayo Clinic is the top of the line in medical care for PSC --

is

> that correct? If so, which one, Florida, Minnesota, or Arizona?

>

> Thanks so much for all your help. I really need it right now.

>

> Suzanna

>

[Guest guest]

Hi Suzanna

I'm sorry for what you are going through. I'm struggling with it

too. I was diagnosed August third. I'm 24 and I have 4 kids (6, 2

1/2, and 6 month old twins). I still struggle with it on a daily

basis. I do have symptoms and an enlarged liver and spleen so I'm

scared out of my mind. But I'm hoping and praying for the best. It

will get a little easier to cope once you've had more time to digest

the info. I still am struggling but I'm now able to ignore it (as

much as my body will allow) and carry on with my life. It's made me

cherish each day I have with my kids because who knows what will

happen in the future.

Feel free to email me directly if you'd like. I see a doctor in

Omaha Nebraska that is really good. I'm not sure where you are

from. But I think any Mayo clinic would be good as well. I know

the one is MN is doing some studies on PSC and genetics.

Good luck to you! And welcome to the group (although I'm sorry you

have to be here). It's a wonderful place to have to come and talk.

24 in Nebraska

PSC 8/07

PBC 10/06