Re: PSC-support membership statistics update

January 4, 2009

Joe,

Thank you for the information you could provide. I appriciate the

support.

Dawn

>

> Sorry I couldn't help further. I hope that you remain well..

>

> Joe

>

January 4, 2009

Joe,

Thank you for the information you could provide. I appriciate the

support.

Dawn

>

> Sorry I couldn't help further. I hope that you remain well..

>

> Joe

>

January 4, 2009

Arne,

Thank you for your wonderful words...

I am new to PSC (diagnosised April 08), but battled UC in the late 70's until I had an S-pouch created when they removed my colon. I learned then that I had to get on with my life, because I had a 4-year old daughter and my husband to get better to go on with our future.

And I have taken on the outlook you stated that we can either worry about any disease/condition we get, or figure out what we can do to make the best out of the hand the life has dealt us. Beside like you said you never now when your time is up, you could die from a disease or from walking across the street. You never know, so live life to the fullest.

I have chosen to get as much knowledge as I can on PSC now, so I can do the best for myself and for my life. I am not going to let it get me down. I am actually starting Nursing School (BSN) in 16 days at the age of 50 (I will be 51 in February). I will be 53 when I graduate.

Again Arne thank you for your wonderful take,

Beth B---Thornton, CO

PS Arne where are you in Minnesota (I was born in MN and lived there until 1991)

January 4, 2009

Arne,

Thank you for your wonderful words...

I am new to PSC (diagnosised April 08), but battled UC in the late 70's until I had an S-pouch created when they removed my colon. I learned then that I had to get on with my life, because I had a 4-year old daughter and my husband to get better to go on with our future.

And I have taken on the outlook you stated that we can either worry about any disease/condition we get, or figure out what we can do to make the best out of the hand the life has dealt us. Beside like you said you never now when your time is up, you could die from a disease or from walking across the street. You never know, so live life to the fullest.

I have chosen to get as much knowledge as I can on PSC now, so I can do the best for myself and for my life. I am not going to let it get me down. I am actually starting Nursing School (BSN) in 16 days at the age of 50 (I will be 51 in February). I will be 53 when I graduate.

Again Arne thank you for your wonderful take,

Beth B---Thornton, CO

PS Arne where are you in Minnesota (I was born in MN and lived there until 1991)

January 4, 2009

Arne,

Thank you for your wonderful words...

I am new to PSC (diagnosised April 08), but battled UC in the late 70's until I had an S-pouch created when they removed my colon. I learned then that I had to get on with my life, because I had a 4-year old daughter and my husband to get better to go on with our future.

And I have taken on the outlook you stated that we can either worry about any disease/condition we get, or figure out what we can do to make the best out of the hand the life has dealt us. Beside like you said you never now when your time is up, you could die from a disease or from walking across the street. You never know, so live life to the fullest.

I have chosen to get as much knowledge as I can on PSC now, so I can do the best for myself and for my life. I am not going to let it get me down. I am actually starting Nursing School (BSN) in 16 days at the age of 50 (I will be 51 in February). I will be 53 when I graduate.

Again Arne thank you for your wonderful take,

Beth B---Thornton, CO

PS Arne where are you in Minnesota (I was born in MN and lived there until 1991)

January 4, 2009

Sorry Arne for yet another comment, but someone recently asked me how

I felt having PSC.

My answer was along the lines of:

" The majority of people 'think' they will die sometime in the never

never. I think I have the advantage in that I have been given a

glimpse of the future in that 'I know I am going to die', and I am

now navigating the future with a very different persepective than

before diagnosed. " The questioner said " oh " and didn't ask any more.

Thanks again for the numbers Arne

>

> Arne,

>

> Thanks for getting on your soap box and passing on this very

important

> message to all of us!!

>

> Ricky

>

> PSC 2003

January 4, 2009

Sorry Arne for yet another comment, but someone recently asked me how

I felt having PSC.

My answer was along the lines of:

" The majority of people 'think' they will die sometime in the never

never. I think I have the advantage in that I have been given a

glimpse of the future in that 'I know I am going to die', and I am

now navigating the future with a very different persepective than

before diagnosed. " The questioner said " oh " and didn't ask any more.

Thanks again for the numbers Arne

>

> Arne,

>

> Thanks for getting on your soap box and passing on this very

important

> message to all of us!!

>

> Ricky

>

> PSC 2003

January 4, 2009

Sorry Arne for yet another comment, but someone recently asked me how

I felt having PSC.

My answer was along the lines of:

" The majority of people 'think' they will die sometime in the never

never. I think I have the advantage in that I have been given a

glimpse of the future in that 'I know I am going to die', and I am

now navigating the future with a very different persepective than

before diagnosed. " The questioner said " oh " and didn't ask any more.

Thanks again for the numbers Arne

>

> Arne,

>

> Thanks for getting on your soap box and passing on this very

important

> message to all of us!!

>

> Ricky

>

> PSC 2003

January 4, 2009

I remember that we lost a few members, those that you mention were way before me. Out of curiosity. Do you know the percentage of members that are active. Was walter a member of this group?I met his brother (I think his name was Stanley) three years ago at a Bar Mitzvah in the four Seasons Las Vegas (he was the MC). I was going to ask about his brother, but I (think it was his wife or companion told me not to). Suprisingly it had a foot ball themeThanks again to Arne and and all who are responsible for this group. I have learned tons of info. Keep up the great work!!!ShaulSent via BlackBerry by AT&TFrom: "A&J M" Date: Sun, 4 Jan 2009 21:36:24 -0600To: < >Subject: RE: PSC-support membership statistics update I had no idea this post would go this way. Here’s my take on it (and yes, I’m an optimist). There were a total of 7 members in 1998, now there are 1600. What does that mean to me? The internet was just getting going in the late 90’s. Usage was growing about 100%/year, similar to . There are probably no more PSCers now than then - Walter Payton had not even announced he had PSC in 1998 (arguably, our first “celebrity”). I can’t prove it, but I’d be willing to bet the word is getting out. I know my hep has distributed many PSC partners brochures. How many of us will die from PSC? It’s far more likely that many of us will die from other causes. The CDC lists the following leading causes of death (US data, of course - 2005): · Heart disease: 652,091 · Cancer: 559,312 · Stroke (cerebrovascular diseases): 143,579 · Chronic lower respiratory diseases: 130,933 · Accidents (unintentional injuries): 117,809 · Diabetes: 75,119 · Alzheimer's disease: 71,599 · Influenza/Pneumonia: 63,001 · Nephritis, nephrotic syndrome, and nephrosis: 43,901 · Septicemia: 34,136 One of our members greatly feared dying of PSC and died of something else. One of the early members fought PSC tooth and nail and died after being hit by a car when he was training for a masters bicycle race (!). Watch out for that bus! I have a family history of heart disease (my father died at 48) and diabetes (grandmother. I have asthma (respiratory). I work on a farm (accidents). Am I worried about PSC? Sure, but to be fair, shouldn’t I also worry about driving to work, baling hay, canoeing in the wilderness and diet? Oh yeah – and bicycling! My only point of posting the membership statistics was to show that we CAN be a force in fighting PSC. There IS power in numbers. Knowledge IS power. My favorite statement from the last conference was from the presenters (mostly Mayo clinicians). “This is the best informed group of patients we’ve ever met”. That would NOT have been said without this group. If it comes to transplant, I have a fair idea what to expect – just from reading the posts of transplantees. Keep up the good work. Every member is valued. Every member has something to contribute. I don’t know how many times my hep has learned of new developments through the posts I read here. He had no idea that Lindor terminated the URSO study, for example. I was lost and floundering after diagnosis, until I stumbled across this group. I literally don’t know what I’d have done without it. Thank you – all of you (I’ll shut up now). J Arne UC 1977, PSC 2000 Alive and well in Minnesota

January 4, 2009

I remember that we lost a few members, those that you mention were way before me. Out of curiosity. Do you know the percentage of members that are active. Was walter a member of this group?I met his brother (I think his name was Stanley) three years ago at a Bar Mitzvah in the four Seasons Las Vegas (he was the MC). I was going to ask about his brother, but I (think it was his wife or companion told me not to). Suprisingly it had a foot ball themeThanks again to Arne and and all who are responsible for this group. I have learned tons of info. Keep up the great work!!!ShaulSent via BlackBerry by AT&TFrom: "A&J M" Date: Sun, 4 Jan 2009 21:36:24 -0600To: < >Subject: RE: PSC-support membership statistics update I had no idea this post would go this way. Here’s my take on it (and yes, I’m an optimist). There were a total of 7 members in 1998, now there are 1600. What does that mean to me? The internet was just getting going in the late 90’s. Usage was growing about 100%/year, similar to . There are probably no more PSCers now than then - Walter Payton had not even announced he had PSC in 1998 (arguably, our first “celebrity”). I can’t prove it, but I’d be willing to bet the word is getting out. I know my hep has distributed many PSC partners brochures. How many of us will die from PSC? It’s far more likely that many of us will die from other causes. The CDC lists the following leading causes of death (US data, of course - 2005): · Heart disease: 652,091 · Cancer: 559,312 · Stroke (cerebrovascular diseases): 143,579 · Chronic lower respiratory diseases: 130,933 · Accidents (unintentional injuries): 117,809 · Diabetes: 75,119 · Alzheimer's disease: 71,599 · Influenza/Pneumonia: 63,001 · Nephritis, nephrotic syndrome, and nephrosis: 43,901 · Septicemia: 34,136 One of our members greatly feared dying of PSC and died of something else. One of the early members fought PSC tooth and nail and died after being hit by a car when he was training for a masters bicycle race (!). Watch out for that bus! I have a family history of heart disease (my father died at 48) and diabetes (grandmother. I have asthma (respiratory). I work on a farm (accidents). Am I worried about PSC? Sure, but to be fair, shouldn’t I also worry about driving to work, baling hay, canoeing in the wilderness and diet? Oh yeah – and bicycling! My only point of posting the membership statistics was to show that we CAN be a force in fighting PSC. There IS power in numbers. Knowledge IS power. My favorite statement from the last conference was from the presenters (mostly Mayo clinicians). “This is the best informed group of patients we’ve ever met”. That would NOT have been said without this group. If it comes to transplant, I have a fair idea what to expect – just from reading the posts of transplantees. Keep up the good work. Every member is valued. Every member has something to contribute. I don’t know how many times my hep has learned of new developments through the posts I read here. He had no idea that Lindor terminated the URSO study, for example. I was lost and floundering after diagnosis, until I stumbled across this group. I literally don’t know what I’d have done without it. Thank you – all of you (I’ll shut up now). J Arne UC 1977, PSC 2000 Alive and well in Minnesota

January 4, 2009

Congratulations Beth! Good luck with school. I believe you will be able to give so much to your patients.

Joanne H

(, Ca, and an old nurse and nurse practitioner!)

I have chosen to get as much knowledge as I can on PSC now, so I can do the best for myself and for my life. I am not going to let it get me down. I am actually starting Nursing School (BSN) in 16 days at the age of 50 (I will be 51 in February). I will be 53 when I graduate.

Again Arne thank you for your wonderful take,

Beth B---Thornton, CO

..

January 4, 2009

Congratulations Beth! Good luck with school. I believe you will be able to give so much to your patients.

Joanne H

(, Ca, and an old nurse and nurse practitioner!)

I have chosen to get as much knowledge as I can on PSC now, so I can do the best for myself and for my life. I am not going to let it get me down. I am actually starting Nursing School (BSN) in 16 days at the age of 50 (I will be 51 in February). I will be 53 when I graduate.

Again Arne thank you for your wonderful take,

Beth B---Thornton, CO

..

January 4, 2009

Arne...Your a good send!...I'm a west coast guy....do you know of any specialist in Southern California for PSC?

Best to us all in 2009

DB

In San Clemente

To: Sent: Sunday, January 4, 2009 8:40:39 PMSubject: Re: RE: PSC-support membership statistics update

I remember that we lost a few members, those that you mention were way before me. Out of curiosity. Do you know the percentage of members that are active. Was walter a member of this group?I met his brother (I think his name was Stanley) three years ago at a Bar Mitzvah in the four Seasons Las Vegas (he was the MC). I was going to ask about his brother, but I (think it was his wife or companion told me not to). Suprisingly it had a foot ball themeThanks again to Arne and and all who are responsible for this group. I have learned tons of info. Keep up the great work!!!Shaul

Sent via BlackBerry by AT & T

From: "A & J M" Date: Sun, 4 Jan 2009 21:36:24 -0600To: <@ yahoogroups. com>Subject: RE: PSC-support membership statistics update

I had no idea this post would go this way. Here’s my take on it (and yes, I’m an optimist).

There were a total of 7 members in 1998, now there are 1600. What does that mean to me?

The internet was just getting going in the late 90’s. Usage was growing about 100%/year, similar to .

There are probably no more PSCers now than then - Walter Payton had not even announced he had PSC in 1998 (arguably, our first “celebrity”).

I can’t prove it, but I’d be willing to bet the word is getting out. I know my hep has distributed many PSC partners brochures.

How many of us will die from PSC? It’s far more likely that many of us will die from other causes. The CDC lists the following leading causes of death (US data, of course - 2005):

· Heart disease: 652,091

· Cancer: 559,312

· Stroke (cerebrovascular diseases): 143,579

· Chronic lower respiratory diseases: 130,933

· Accidents (unintentional injuries): 117,809

· Diabetes: 75,119

· Alzheimer's disease: 71,599

· Influenza/Pneumonia : 63,001

· Nephritis, nephrotic syndrome, and nephrosis: 43,901

· Septicemia: 34,136

One of our members greatly feared dying of PSC and died of something else. One of the early members fought PSC tooth and nail and died after being hit by a car when he was training for a masters bicycle race (!). Watch out for that bus!

I have a family history of heart disease (my father died at 48) and diabetes (grandmother.. I have asthma (respiratory) . I work on a farm (accidents). Am I worried about PSC? Sure, but to be fair, shouldn’t I also worry about driving to work, baling hay, canoeing in the wilderness and diet? Oh yeah – and bicycling!

My only point of posting the membership statistics was to show that we CAN be a force in fighting PSC. There IS power in numbers. Knowledge IS power. My favorite statement from the last conference was from the presenters (mostly Mayo clinicians). “This is the best informed group of patients we’ve ever met”. That would NOT have been said without this group.

If it comes to transplant, I have a fair idea what to expect – just from reading the posts of transplantees. Keep up the good work. Every member is valued. Every member has something to contribute. I don’t know how many times my hep has learned of new developments through the posts I read here. He had no idea that Lindor terminated the URSO study, for example.

I was lost and floundering after diagnosis, until I stumbled across this group. I literally don’t know what I’d have done without it.

Thank you – all of you (I’ll shut up now). J

Arne

UC 1977, PSC 2000

Alive and well in Minnesota

January 4, 2009

Arne...Your a good send!...I'm a west coast guy....do you know of any specialist in Southern California for PSC?

Best to us all in 2009

DB

In San Clemente

To: Sent: Sunday, January 4, 2009 8:40:39 PMSubject: Re: RE: PSC-support membership statistics update

I remember that we lost a few members, those that you mention were way before me. Out of curiosity. Do you know the percentage of members that are active. Was walter a member of this group?I met his brother (I think his name was Stanley) three years ago at a Bar Mitzvah in the four Seasons Las Vegas (he was the MC). I was going to ask about his brother, but I (think it was his wife or companion told me not to). Suprisingly it had a foot ball themeThanks again to Arne and and all who are responsible for this group. I have learned tons of info. Keep up the great work!!!Shaul

Sent via BlackBerry by AT & T

From: "A & J M" Date: Sun, 4 Jan 2009 21:36:24 -0600To: <@ yahoogroups. com>Subject: RE: PSC-support membership statistics update

I had no idea this post would go this way. Here’s my take on it (and yes, I’m an optimist).

There were a total of 7 members in 1998, now there are 1600. What does that mean to me?

The internet was just getting going in the late 90’s. Usage was growing about 100%/year, similar to .

There are probably no more PSCers now than then - Walter Payton had not even announced he had PSC in 1998 (arguably, our first “celebrity”).

I can’t prove it, but I’d be willing to bet the word is getting out. I know my hep has distributed many PSC partners brochures.

How many of us will die from PSC? It’s far more likely that many of us will die from other causes. The CDC lists the following leading causes of death (US data, of course - 2005):

· Heart disease: 652,091

· Cancer: 559,312

· Stroke (cerebrovascular diseases): 143,579

· Chronic lower respiratory diseases: 130,933

· Accidents (unintentional injuries): 117,809

· Diabetes: 75,119

· Alzheimer's disease: 71,599

· Influenza/Pneumonia : 63,001

· Nephritis, nephrotic syndrome, and nephrosis: 43,901

· Septicemia: 34,136

One of our members greatly feared dying of PSC and died of something else. One of the early members fought PSC tooth and nail and died after being hit by a car when he was training for a masters bicycle race (!). Watch out for that bus!

I have a family history of heart disease (my father died at 48) and diabetes (grandmother.. I have asthma (respiratory) . I work on a farm (accidents). Am I worried about PSC? Sure, but to be fair, shouldn’t I also worry about driving to work, baling hay, canoeing in the wilderness and diet? Oh yeah – and bicycling!

My only point of posting the membership statistics was to show that we CAN be a force in fighting PSC. There IS power in numbers. Knowledge IS power. My favorite statement from the last conference was from the presenters (mostly Mayo clinicians). “This is the best informed group of patients we’ve ever met”. That would NOT have been said without this group.

If it comes to transplant, I have a fair idea what to expect – just from reading the posts of transplantees. Keep up the good work. Every member is valued. Every member has something to contribute. I don’t know how many times my hep has learned of new developments through the posts I read here. He had no idea that Lindor terminated the URSO study, for example.

I was lost and floundering after diagnosis, until I stumbled across this group. I literally don’t know what I’d have done without it.

Thank you – all of you (I’ll shut up now). J

Arne

UC 1977, PSC 2000

Alive and well in Minnesota

January 4, 2009

Arne...Your a good send!...I'm a west coast guy....do you know of any specialist in Southern California for PSC?

Best to us all in 2009

DB

In San Clemente

To: Sent: Sunday, January 4, 2009 8:40:39 PMSubject: Re: RE: PSC-support membership statistics update

I remember that we lost a few members, those that you mention were way before me. Out of curiosity. Do you know the percentage of members that are active. Was walter a member of this group?I met his brother (I think his name was Stanley) three years ago at a Bar Mitzvah in the four Seasons Las Vegas (he was the MC). I was going to ask about his brother, but I (think it was his wife or companion told me not to). Suprisingly it had a foot ball themeThanks again to Arne and and all who are responsible for this group. I have learned tons of info. Keep up the great work!!!Shaul

Sent via BlackBerry by AT & T

From: "A & J M" Date: Sun, 4 Jan 2009 21:36:24 -0600To: <@ yahoogroups. com>Subject: RE: PSC-support membership statistics update

I had no idea this post would go this way. Here’s my take on it (and yes, I’m an optimist).

There were a total of 7 members in 1998, now there are 1600. What does that mean to me?

The internet was just getting going in the late 90’s. Usage was growing about 100%/year, similar to .

There are probably no more PSCers now than then - Walter Payton had not even announced he had PSC in 1998 (arguably, our first “celebrity”).

I can’t prove it, but I’d be willing to bet the word is getting out. I know my hep has distributed many PSC partners brochures.

How many of us will die from PSC? It’s far more likely that many of us will die from other causes. The CDC lists the following leading causes of death (US data, of course - 2005):

· Heart disease: 652,091

· Cancer: 559,312

· Stroke (cerebrovascular diseases): 143,579

· Chronic lower respiratory diseases: 130,933

· Accidents (unintentional injuries): 117,809

· Diabetes: 75,119

· Alzheimer's disease: 71,599

· Influenza/Pneumonia : 63,001

· Nephritis, nephrotic syndrome, and nephrosis: 43,901

· Septicemia: 34,136

One of our members greatly feared dying of PSC and died of something else. One of the early members fought PSC tooth and nail and died after being hit by a car when he was training for a masters bicycle race (!). Watch out for that bus!

I have a family history of heart disease (my father died at 48) and diabetes (grandmother.. I have asthma (respiratory) . I work on a farm (accidents). Am I worried about PSC? Sure, but to be fair, shouldn’t I also worry about driving to work, baling hay, canoeing in the wilderness and diet? Oh yeah – and bicycling!

My only point of posting the membership statistics was to show that we CAN be a force in fighting PSC. There IS power in numbers. Knowledge IS power. My favorite statement from the last conference was from the presenters (mostly Mayo clinicians). “This is the best informed group of patients we’ve ever met”. That would NOT have been said without this group.

If it comes to transplant, I have a fair idea what to expect – just from reading the posts of transplantees. Keep up the good work. Every member is valued. Every member has something to contribute. I don’t know how many times my hep has learned of new developments through the posts I read here. He had no idea that Lindor terminated the URSO study, for example.

I was lost and floundering after diagnosis, until I stumbled across this group. I literally don’t know what I’d have done without it.

Thank you – all of you (I’ll shut up now). J

Arne

UC 1977, PSC 2000

Alive and well in Minnesota

January 5, 2009

Good Morning Arne,No need to shut up, all that you said was great.I love what you have to say in this paragraph.Now imagine if we can add to this by not only being the best informed group of patients but alsothe best group of patients to gather enough data to help researchers know more about PSC.Who better to do this than this group that shares so much freely and because of this support groupand the conferences have the opportunity to put together what so far the researchers haven't had thenumbers to do.Here's hoping 2009 is the year that together we make that difference in PSC treatment !!My only point of posting the membership statistics was to show that we CAN be a force in fighting PSC. There IS power in numbers. Knowledge IS power. My favorite statement from the last conference was from the presenters (mostly Mayo clinicians). “This is the best informed group of patients we’ve ever met”. That would NOT have been said without this group.

January 5, 2009

Good Morning Arne,No need to shut up, all that you said was great.I love what you have to say in this paragraph.Now imagine if we can add to this by not only being the best informed group of patients but alsothe best group of patients to gather enough data to help researchers know more about PSC.Who better to do this than this group that shares so much freely and because of this support groupand the conferences have the opportunity to put together what so far the researchers haven't had thenumbers to do.Here's hoping 2009 is the year that together we make that difference in PSC treatment !!My only point of posting the membership statistics was to show that we CAN be a force in fighting PSC. There IS power in numbers. Knowledge IS power. My favorite statement from the last conference was from the presenters (mostly Mayo clinicians). “This is the best informed group of patients we’ve ever met”. That would NOT have been said without this group.

January 5, 2009

Good Morning Arne,No need to shut up, all that you said was great.I love what you have to say in this paragraph.Now imagine if we can add to this by not only being the best informed group of patients but alsothe best group of patients to gather enough data to help researchers know more about PSC.Who better to do this than this group that shares so much freely and because of this support groupand the conferences have the opportunity to put together what so far the researchers haven't had thenumbers to do.Here's hoping 2009 is the year that together we make that difference in PSC treatment !!My only point of posting the membership statistics was to show that we CAN be a force in fighting PSC. There IS power in numbers. Knowledge IS power. My favorite statement from the last conference was from the presenters (mostly Mayo clinicians). “This is the best informed group of patients we’ve ever met”. That would NOT have been said without this group.

January 5, 2009

Hello ! My name is Tammy and I was told almost 5 years ago that I

have small duct PSC, and have been trying to deal with things on my

own with the help of my sister and a few close friends, but have

prayed very hard about finding other people with the same thing that

I have.

Now I know that I am not the only one with this stuff.

What is the MELD score, and are you on the list for a transplant if

so how long after you were told that you had it did it take for you

to reach that point?

God Blessings

Tammy

>

> Oh - one more thing. They may/can list you at a 7. They listed me

at a 6,

> although at that MELD score they just monitor your numbers until

they get

> worse.

>

> From: [mailto:psc-

support ] On

> Behalf Of Anita Oakley

> Sent: Sunday, January 04, 2009 4:55 PM

> To:

> Subject: RE: Re: PSC-support membership statistics

update

>

> Hi Dawn,

>

> I'm so sorry. I know mostly they just go by the numbers. And now

with the

> new rules, I guess that it's almost entirely by the numbers. I got

in on the

> last couple of days of points for reliance on a biliary tube. That

put me at

> a 20, but it will be reevaluated at the 3 month mark, and I'll lose

those

> points if I don't have a liver by then.

>

> However, I know for a fact that if you have three documented cases

of

> treatment for cholangitis attacks within a 6 month period, your

doctor can

> apply for additional points. That would put you at a 15 if

approved. That's

> the low end of eligible but at least it's eligible.

>

> Nita

>

> _,_._,___

>

January 5, 2009

Hi! at the end of the World : )

thank you for responding to my email I do have support of some of my family and most of my frineds!

My real mom and dad wish not to talk about it or act like there is nothing wrong with me. At lest that is my

fathers thing, and my mom I think that she prays for me alot, but that is that. My sister is wonderful but it is

hard for her as we have lost two other brothers. She was not born when our older brother passed, and was

very young when the other one passed. I think she thinks if she does not think about it then it is not so real : )

She is always there when I am in the hospital as much as she can be...She has her own family you know!

My son who is 17 hard for me to beleive found out last year as I kept it from him he moved back to his fathers hous.

We talk almost everyday and I see him alot. We enjoy life togthere alot! : ) He said it is easy this way he does not have

to watch me die. I look at it like God has given me a gift and I get to look at life like other people do not look at it for the

most part. or at lest I try too.

I am however having a very hard time telling this one person in my life what is wrong with me as I am afaird what it will do

to our relantionship. I do not want anyone felling sorry for me, and I guess I am afraid that he will not be able to handle it.

I mean what am I suppose to say to him! He knows there is something wrong with my liver, but I just have not told him

what it is....................... Any advice?

How long have you had PSC?What meds are you on if any?

God Speed

Tammy

P.S. I love what you told Arne

To: Sent: Sunday, January 4, 2009 10:37:39 PMSubject: Re: PSC-support membership statistics update

Sorry Arne for yet another comment, but someone recently asked me how I felt having PSC. My answer was along the lines of:"The majority of people 'think' they will die sometime in the never never. I think I have the advantage in that I have been given a glimpse of the future in that 'I know I am going to die', and I am now navigating the future with a very different persepective than before diagnosed." The questioner said "oh" and didn't ask any more.Thanks again for the numbers Arne>> Arne,> > > > Thanks for getting on your soap box and passing on this very important> message to all of us!!> > > > Ricky >

> PSC 2003

January 5, 2009