New at this

[Guest guest]

Hi! My name is Tammy and I am new at this emailing people that I do not know at all. I was told almost 5 years ago that I have small duct PSC.

Also told that small duct is better than large duct : ) As my wonderful sister and friends have benn so wonderful to stand behind me in all of this it

sometimes hard for me to tell them how I am feeling inside and outside. Lets face it when they tell you there is nothing they can do for you and there is

no cure for what you have it is a very hard thing to take. Blood test all the time, ERCP,Things up your.......... too make sure all of that is going well,Dr

vists and so on it gets a little old. I have prayed for an answer and then online support poped in my head, so I am here. Please help me !

Tammy

[Guest guest]

Hi Tammy

What a lovely name. Its so great you have the support of your sister

and friends.

Welcome to our group, you look as if you have got the hang of posting

to the group with your 3 postings.

I am sure you find support and answers from other members of the

group.

If you look near the top of the postings page, you will see a

Message# and Search Box, if you type key words like 'small duct PSC'

into the search box it will bring up previous postings on that

subject.

Best wishes

from the bottom of the world in New Zealand

>

> Hi! My name is Tammy and I am new at this emailing people that I do

not know at all. I was told almost 5 years ago that I have small duct

PSC.

[Guest guest]

WelcomeYou've come to the right place. I don't think we can tell you why PSC fell in your lot but we sure can share experiences and offer support. Good luckShaulPSC UC Sent via BlackBerry by AT&TFrom: Tammy Eklund Date: Mon, 5 Jan 2009 13:51:51 -0800 (PST)To: < >Subject: RE:New At This Hi! My name is Tammy and I am new at this emailing people that I do not know at all. I was told almost 5 years ago that I have small duct PSC.Also told that small duct is better than large duct : ) As my wonderful sister and friends have benn so wonderful to stand behind me in all of this it sometimes hard for me to tell them how I am feeling inside and outside. Lets face it when they tell you there is nothing they can do for you and there is no cure for what you have it is a very hard thing to take. Blood test all the time, ERCP,Things up your.......... too make sure all of that is going well,Drvists and so on it gets a little old. I have prayed for an answer and then online support poped in my head, so I am here. Please help me ! Tammy

[Guest guest]

WelcomeYou've come to the right place. I don't think we can tell you why PSC fell in your lot but we sure can share experiences and offer support. Good luckShaulPSC UC Sent via BlackBerry by AT&TFrom: Tammy Eklund Date: Mon, 5 Jan 2009 13:51:51 -0800 (PST)To: < >Subject: RE:New At This Hi! My name is Tammy and I am new at this emailing people that I do not know at all. I was told almost 5 years ago that I have small duct PSC.Also told that small duct is better than large duct : ) As my wonderful sister and friends have benn so wonderful to stand behind me in all of this it sometimes hard for me to tell them how I am feeling inside and outside. Lets face it when they tell you there is nothing they can do for you and there is no cure for what you have it is a very hard thing to take. Blood test all the time, ERCP,Things up your.......... too make sure all of that is going well,Drvists and so on it gets a little old. I have prayed for an answer and then online support poped in my head, so I am here. Please help me ! Tammy

[Guest guest]

Welcome Tammy,

This is a great group. I also have small duct PSC and was offically

DX 5 years ago though my symptoms began 15 years ago. You have found

a great bunch of people

Dawn

>

> Hi! My name is Tammy and I am new at this emailing people that I do

not know at all. I was told almost 5 years ago that I have small duct

PSC.

> Also told that small duct is better than large duct : ) As my

wonderful sister and friends have benn so wonderful to stand behind

me in all of this it

> sometimes hard for me to tell them how I am feeling inside and

outside. Lets face it when they tell you there is nothing they can do

for you and there is

> no cure for what you have it is a very hard thing to take. Blood

test all the time, ERCP,Things up your.......... too make sure all of

that is going well,Dr

> vists and so on it gets a little old. I have prayed for an answer

and then online support poped in my head, so I am here. Please help

me !

>

> Tammy

>

[Guest guest]

Welcome Tammy,

This is a great group. I also have small duct PSC and was offically

DX 5 years ago though my symptoms began 15 years ago. You have found

a great bunch of people

Dawn

>

> Hi! My name is Tammy and I am new at this emailing people that I do

not know at all. I was told almost 5 years ago that I have small duct

PSC.

> Also told that small duct is better than large duct : ) As my

wonderful sister and friends have benn so wonderful to stand behind

me in all of this it

> sometimes hard for me to tell them how I am feeling inside and

outside. Lets face it when they tell you there is nothing they can do

for you and there is

> no cure for what you have it is a very hard thing to take. Blood

test all the time, ERCP,Things up your.......... too make sure all of

that is going well,Dr

> vists and so on it gets a little old. I have prayed for an answer

and then online support poped in my head, so I am here. Please help

me !

>

> Tammy

>

[Guest guest]

Thank you for your reply to my email I have told my sister about the site and she is glad that I

did email and we both hope that I now have someone to talk with about what I have. She

so hard, but when you do not have this disorder it is hard to understand....Again I thank you

so much for the reply ! I do have a question maybe you can help with this. I am having a very

hard time telling someone I care about allot about what is wrong with me and what it is. This has

been very hard for me and I am not sure why. Help ! Has anyone had this issue.

Tammy

To: Sent: Monday, January 5, 2009 7:32:56 PMSubject: Re: RE:New At This

WelcomeYou've come to the right place. I don't think we can tell you why PSC fell in your lot but we sure can share experiences and offer support. Good luckShaulPSC UC Sent via BlackBerry by AT & T

From: Tammy Eklund Date: Mon, 5 Jan 2009 13:51:51 -0800 (PST)To: <@ yahoogroups. com>Subject: RE:New At This

Hi! My name is Tammy and I am new at this emailing people that I do not know at all. I was told almost 5 years ago that I have small duct PSC.

Also told that small duct is better than large duct : ) As my wonderful sister and friends have benn so wonderful to stand behind me in all of this it

sometimes hard for me to tell them how I am feeling inside and outside. Lets face it when they tell you there is nothing they can do for you and there is

no cure for what you have it is a very hard thing to take. Blood test all the time, ERCP,Things up your........ .. too make sure all of that is going well,Dr

vists and so on it gets a little old. I have prayed for an answer and then online support poped in my head, so I am here. Please help me !

Tammy

[Guest guest]

Thank you for your reply to my email I have told my sister about the site and she is glad that I

did email and we both hope that I now have someone to talk with about what I have. She

so hard, but when you do not have this disorder it is hard to understand....Again I thank you

so much for the reply ! I do have a question maybe you can help with this. I am having a very

hard time telling someone I care about allot about what is wrong with me and what it is. This has

been very hard for me and I am not sure why. Help ! Has anyone had this issue.

Tammy

To: Sent: Monday, January 5, 2009 7:32:56 PMSubject: Re: RE:New At This

WelcomeYou've come to the right place. I don't think we can tell you why PSC fell in your lot but we sure can share experiences and offer support. Good luckShaulPSC UC Sent via BlackBerry by AT & T

From: Tammy Eklund Date: Mon, 5 Jan 2009 13:51:51 -0800 (PST)To: <@ yahoogroups. com>Subject: RE:New At This

Hi! My name is Tammy and I am new at this emailing people that I do not know at all. I was told almost 5 years ago that I have small duct PSC.

Also told that small duct is better than large duct : ) As my wonderful sister and friends have benn so wonderful to stand behind me in all of this it

sometimes hard for me to tell them how I am feeling inside and outside. Lets face it when they tell you there is nothing they can do for you and there is

no cure for what you have it is a very hard thing to take. Blood test all the time, ERCP,Things up your........ .. too make sure all of that is going well,Dr

vists and so on it gets a little old. I have prayed for an answer and then online support poped in my head, so I am here. Please help me !

Tammy

[Guest guest]

Tammy,

They are debating my stage right now. My last biopsy says stage 1-2

by ERCP says satge 2 possibly early stage 3. I have lost a lot of

the small ducts already and some of the larger ducts are forming

strictures. I take Ursodol 1200 mgs daily, Multi Vit daily, 600 mgs

calcium twice daily, B-12 injections monthly. I have just been

placed on a hypoglycemic and low oxalate diet. I also take

synthroid .2 daily (Hypothroid disease), Floracorticoid (spelled

wrong- adrenal insufficency) and arthrotec for degenerative disc and

joint disease and welbutrin for depression. I have a lot going on!!!

As for telling people - this is how I told my boyfriend and kids - I

have a disease that affects my liver, it will get progressively

worse; however, I am doing everything I can to have a full life and

fight it. Right now, there is no cure for this disease but there are

people who are working to find better treatment options and hopefully

they will have one before I get to sick.

I don't know if that helps but it has worked well for me with the

people I am close to. It takes some of the negativity away from it.

Dawn

> >

> > Hi! My name is Tammy and I am new at this emailing people that I

do

> not know at all. I was told almost 5 years ago that I have small

duct

> PSC.

> > Also told that small duct is better than large duct : ) As my

> wonderful sister and friends have benn so wonderful to stand behind

> me in all of this it

> > sometimes hard for me to tell them how I am feeling inside and

> outside. Lets face it when they tell you there is nothing they can

do

> for you and there is

> > no cure for what you have it is a very hard thing to take. Blood

> test all the time, ERCP,Things up your........ .. too make sure all

of

> that is going well,Dr

> > vists and so on it gets a little old. I have prayed for an answer

> and then online support poped in my head, so I am here. Please help

> me !

> >

> > Tammy

> >

>

[Guest guest]

Tammy,

They are debating my stage right now. My last biopsy says stage 1-2

by ERCP says satge 2 possibly early stage 3. I have lost a lot of

the small ducts already and some of the larger ducts are forming

strictures. I take Ursodol 1200 mgs daily, Multi Vit daily, 600 mgs

calcium twice daily, B-12 injections monthly. I have just been

placed on a hypoglycemic and low oxalate diet. I also take

synthroid .2 daily (Hypothroid disease), Floracorticoid (spelled

wrong- adrenal insufficency) and arthrotec for degenerative disc and

joint disease and welbutrin for depression. I have a lot going on!!!

As for telling people - this is how I told my boyfriend and kids - I

have a disease that affects my liver, it will get progressively

worse; however, I am doing everything I can to have a full life and

fight it. Right now, there is no cure for this disease but there are

people who are working to find better treatment options and hopefully

they will have one before I get to sick.

I don't know if that helps but it has worked well for me with the

people I am close to. It takes some of the negativity away from it.

Dawn

> >

> > Hi! My name is Tammy and I am new at this emailing people that I

do

> not know at all. I was told almost 5 years ago that I have small

duct

> PSC.

> > Also told that small duct is better than large duct : ) As my

> wonderful sister and friends have benn so wonderful to stand behind

> me in all of this it

> > sometimes hard for me to tell them how I am feeling inside and

> outside. Lets face it when they tell you there is nothing they can

do

> for you and there is

> > no cure for what you have it is a very hard thing to take. Blood

> test all the time, ERCP,Things up your........ .. too make sure all

of

> that is going well,Dr

> > vists and so on it gets a little old. I have prayed for an answer

> and then online support poped in my head, so I am here. Please help

> me !

> >

> > Tammy

> >

>

[Guest guest]

Tammy,

They are debating my stage right now. My last biopsy says stage 1-2

by ERCP says satge 2 possibly early stage 3. I have lost a lot of

the small ducts already and some of the larger ducts are forming

strictures. I take Ursodol 1200 mgs daily, Multi Vit daily, 600 mgs

calcium twice daily, B-12 injections monthly. I have just been

placed on a hypoglycemic and low oxalate diet. I also take

synthroid .2 daily (Hypothroid disease), Floracorticoid (spelled

wrong- adrenal insufficency) and arthrotec for degenerative disc and

joint disease and welbutrin for depression. I have a lot going on!!!

As for telling people - this is how I told my boyfriend and kids - I

have a disease that affects my liver, it will get progressively

worse; however, I am doing everything I can to have a full life and

fight it. Right now, there is no cure for this disease but there are

people who are working to find better treatment options and hopefully

they will have one before I get to sick.

I don't know if that helps but it has worked well for me with the

people I am close to. It takes some of the negativity away from it.

Dawn

> >

> > Hi! My name is Tammy and I am new at this emailing people that I

do

> not know at all. I was told almost 5 years ago that I have small

duct

> PSC.

> > Also told that small duct is better than large duct : ) As my

> wonderful sister and friends have benn so wonderful to stand behind

> me in all of this it

> > sometimes hard for me to tell them how I am feeling inside and

> outside. Lets face it when they tell you there is nothing they can

do

> for you and there is

> > no cure for what you have it is a very hard thing to take. Blood

> test all the time, ERCP,Things up your........ .. too make sure all

of

> that is going well,Dr

> > vists and so on it gets a little old. I have prayed for an answer

> and then online support poped in my head, so I am here. Please help

> me !

> >

> > Tammy

> >

>

[Guest guest]

Hi Tammy,

You have come to the right place. Everyone here has perspective

on this disease that nobody else can. We are all patients or caregivers. All

very close to the problem. Some of us have had liver transplants. Some are on

the waiting list. Others are still managing their care in other ways. No matter

what though, you can tell us what you are feeling and know that we will

understand. You can ask questions any time of day or night, and we’ll be

there to answer with our own experiences and research. We are all here to help

and support each other.

I think that the biggest thing for me was knowing I’m not

alone. Most everyone I run into has no idea what PSC is. Most medical people

just scratch their heads. It took nearly 10 years to get a diagnosis. Knowing

that there are people here who do understand means the world to me.

Anita

[Guest guest]

Hi Tammy,

You have come to the right place. Everyone here has perspective

on this disease that nobody else can. We are all patients or caregivers. All

very close to the problem. Some of us have had liver transplants. Some are on

the waiting list. Others are still managing their care in other ways. No matter

what though, you can tell us what you are feeling and know that we will

understand. You can ask questions any time of day or night, and we’ll be

there to answer with our own experiences and research. We are all here to help

and support each other.

I think that the biggest thing for me was knowing I’m not

alone. Most everyone I run into has no idea what PSC is. Most medical people

just scratch their heads. It took nearly 10 years to get a diagnosis. Knowing

that there are people here who do understand means the world to me.

Anita

[Guest guest]

Hi Tammy,

You have come to the right place. Everyone here has perspective

on this disease that nobody else can. We are all patients or caregivers. All

very close to the problem. Some of us have had liver transplants. Some are on

the waiting list. Others are still managing their care in other ways. No matter

what though, you can tell us what you are feeling and know that we will

understand. You can ask questions any time of day or night, and we’ll be

there to answer with our own experiences and research. We are all here to help

and support each other.

I think that the biggest thing for me was knowing I’m not

alone. Most everyone I run into has no idea what PSC is. Most medical people

just scratch their heads. It took nearly 10 years to get a diagnosis. Knowing

that there are people here who do understand means the world to me.

Anita

[Guest guest]

This is what I was told as well. He said " ee, you are not going

to die young from liver disease. You are far more likely to die with

this than from it " .

Hang in there Tammy. I know how you feel, I spent the first few weeks

certain this was the beginning of the end for me, ahead of schedule.

The more you learn, the more confident you will become.

ee

> The doctor who diagnosed my PSC and UC told me in 1990 that his goal

was to

> treat me so that I would live a full life and die from old age and

not PSC.

[Guest guest]

This is what I was told as well. He said " ee, you are not going

to die young from liver disease. You are far more likely to die with

this than from it " .

Hang in there Tammy. I know how you feel, I spent the first few weeks

certain this was the beginning of the end for me, ahead of schedule.

The more you learn, the more confident you will become.

ee

> The doctor who diagnosed my PSC and UC told me in 1990 that his goal

was to

> treat me so that I would live a full life and die from old age and

not PSC.

[Guest guest]

This is what I was told as well. He said " ee, you are not going

to die young from liver disease. You are far more likely to die with

this than from it " .

Hang in there Tammy. I know how you feel, I spent the first few weeks

certain this was the beginning of the end for me, ahead of schedule.

The more you learn, the more confident you will become.

ee

> The doctor who diagnosed my PSC and UC told me in 1990 that his goal

was to

> treat me so that I would live a full life and die from old age and

not PSC.

[Guest guest]

Joe

thank you for your answer I am glad that you are doing well. Why di

dy you say look for fevers? Is that a big deal? I have been fighting

fever off and on for 5 years. By the time I get to the Dr.alot of the

time they are gone or not over 99.9 or a 100.00 the consdier that low

grade. My labs are regular all the time For the most part I do not

let this get to me, and now I feel so much better that I have found

other people who have what I have. How are you seens your transplant?

>

> Hi Tammy,

>

>

>

> The doctor who diagnosed my PSC and UC told me in 1990 that his

goal was to

> treat me so that I would live a full life and die from old age and

not PSC.

> I was diagnosed in 1990 and for 17 years lived a fairly normal

life. I then

> had a transplant in 2007 and again I am leading a fairly normal

life.

>

>

>

> As Anita said, pay attention to your body, especially fevers, great

fatigue,

> take your meds, and get regular labs. This disease is not a death

sentence.

>

>

>

>

> Joe

>

> 1990-PSC, UC, 2007-Tx

>

[Guest guest]

Joe

thank you for your answer I am glad that you are doing well. Why di

dy you say look for fevers? Is that a big deal? I have been fighting

fever off and on for 5 years. By the time I get to the Dr.alot of the

time they are gone or not over 99.9 or a 100.00 the consdier that low

grade. My labs are regular all the time For the most part I do not

let this get to me, and now I feel so much better that I have found

other people who have what I have. How are you seens your transplant?

>

> Hi Tammy,

>

>

>

> The doctor who diagnosed my PSC and UC told me in 1990 that his

goal was to

> treat me so that I would live a full life and die from old age and

not PSC.

> I was diagnosed in 1990 and for 17 years lived a fairly normal

life. I then

> had a transplant in 2007 and again I am leading a fairly normal

life.

>

>

>

> As Anita said, pay attention to your body, especially fevers, great

fatigue,

> take your meds, and get regular labs. This disease is not a death

sentence.

>

>

>

>

> Joe

>

> 1990-PSC, UC, 2007-Tx

>

[Guest guest]

Thank you Anita for the advice I will talk to the Dr. on Tuesday when I

see him for my test we do a CT and a lovely colon test : ) You know the

old lets do a whole day befor of going to the bathroom.. You were right

I thought I was just strange with my body temp not being like everyone

els. Now I know it is just this strange thing we have, so have a great

evening enjoy life and all that God has Blessed us with and I will talk

to you soon.

God's Peace

Tammy

[Guest guest]

Thank you Anita for the advice I will talk to the Dr. on Tuesday when I

see him for my test we do a CT and a lovely colon test : ) You know the

old lets do a whole day befor of going to the bathroom.. You were right

I thought I was just strange with my body temp not being like everyone

els. Now I know it is just this strange thing we have, so have a great

evening enjoy life and all that God has Blessed us with and I will talk

to you soon.

God's Peace

Tammy

[Guest guest]

Thank you Anita for the advice I will talk to the Dr. on Tuesday when I

see him for my test we do a CT and a lovely colon test : ) You know the

old lets do a whole day befor of going to the bathroom.. You were right

I thought I was just strange with my body temp not being like everyone

els. Now I know it is just this strange thing we have, so have a great

evening enjoy life and all that God has Blessed us with and I will talk

to you soon.

God's Peace

Tammy