Re: PSC-support membership statistics update

[Guest guest]

Arne, athan, and ,

Thanks to the three of you for

building up this group! The increased membership statistics are amazing.

Ricky

PSC

2003

From:

[mailto: ] On Behalf

Of A & J M

Sent: Saturday, January 03, 2009 8:11 PM

To:

Subject: PSC-support membership statistics update

Almost

1600 now!

Year

New

Members

Total

1998

7

7

1999

45

52

2000

58

120

2001

94

214

2002

102

316

2003

133

449

2004

156

605

2005

231

836

2006

317

1153

2007

211

1364

2008

234

1598

Arne

UC

1977, PSC 2000

Alive

and well in Minnesota

[Guest guest]

This post brought about a lot of emotions from me. I’ll

share a few here that I had about this statistic:

Pros: I have learned a LOT from the experiences shared

here and I’m very happy to be a part of this very specific group.

Several of you have poured your hearts out and have been incredibly

helpful. It is people like you that put a smile on my face and I hope

that one day I can be as optimistic and encouraging as you are! I am very

thankful for all of you who are helping and sharing here.

Cons: Obviously, there are 1597 other people here that

have varying degrees of a very difficult disease. My heart goes out to

all of you and I pray for all of you continually. There are also at least

1000 of you with UC, if we use the common statistics. How many of us will

die this year? And next? How much are we held back as a result of

this disease?

It may be that I’m still struggling with the course of the

disease especially now that I can see my LFT labs slowly and steadily moving

up. The point of Arne’s post is that we are a community of

people helping each other out and trying to make it through a big hurdle in our

lives. It is nice to have more friends and a bigger community with PSC in

common. And it is amazing to see the exponential growth in this

group. I hope that this doesn’t come across as hijacking the thread

or discounting Arne’s news. I really do love all of you and wish the

best for all 1598 of us and our families.

Rick

From:

[mailto: ] On Behalf Of A & J M

Sent: Saturday, January 03, 2009 10:11 PM

To:

Subject: PSC-support membership statistics update

Almost

1600 now!

Year

New Members

Total

1998

7

7

1999

45

52

2000

58

120

2001

94

214

2002

102

316

2003

133

449

2004

156

605

2005

231

836

2006

317

1153

2007

211

1364

2008

234

1598

Arne

UC 1977, PSC 2000

Alive and well in Minnesota

[Guest guest]

This post brought about a lot of emotions from me. I’ll

share a few here that I had about this statistic:

Pros: I have learned a LOT from the experiences shared

here and I’m very happy to be a part of this very specific group.

Several of you have poured your hearts out and have been incredibly

helpful. It is people like you that put a smile on my face and I hope

that one day I can be as optimistic and encouraging as you are! I am very

thankful for all of you who are helping and sharing here.

Cons: Obviously, there are 1597 other people here that

have varying degrees of a very difficult disease. My heart goes out to

all of you and I pray for all of you continually. There are also at least

1000 of you with UC, if we use the common statistics. How many of us will

die this year? And next? How much are we held back as a result of

this disease?

It may be that I’m still struggling with the course of the

disease especially now that I can see my LFT labs slowly and steadily moving

up. The point of Arne’s post is that we are a community of

people helping each other out and trying to make it through a big hurdle in our

lives. It is nice to have more friends and a bigger community with PSC in

common. And it is amazing to see the exponential growth in this

group. I hope that this doesn’t come across as hijacking the thread

or discounting Arne’s news. I really do love all of you and wish the

best for all 1598 of us and our families.

Rick

From:

[mailto: ] On Behalf Of A & J M

Sent: Saturday, January 03, 2009 10:11 PM

To:

Subject: PSC-support membership statistics update

Almost

1600 now!

Year

New Members

Total

1998

7

7

1999

45

52

2000

58

120

2001

94

214

2002

102

316

2003

133

449

2004

156

605

2005

231

836

2006

317

1153

2007

211

1364

2008

234

1598

Arne

UC 1977, PSC 2000

Alive and well in Minnesota

[Guest guest]

This post brought about a lot of emotions from me. I’ll

share a few here that I had about this statistic:

Pros: I have learned a LOT from the experiences shared

here and I’m very happy to be a part of this very specific group.

Several of you have poured your hearts out and have been incredibly

helpful. It is people like you that put a smile on my face and I hope

that one day I can be as optimistic and encouraging as you are! I am very

thankful for all of you who are helping and sharing here.

Cons: Obviously, there are 1597 other people here that

have varying degrees of a very difficult disease. My heart goes out to

all of you and I pray for all of you continually. There are also at least

1000 of you with UC, if we use the common statistics. How many of us will

die this year? And next? How much are we held back as a result of

this disease?

It may be that I’m still struggling with the course of the

disease especially now that I can see my LFT labs slowly and steadily moving

up. The point of Arne’s post is that we are a community of

people helping each other out and trying to make it through a big hurdle in our

lives. It is nice to have more friends and a bigger community with PSC in

common. And it is amazing to see the exponential growth in this

group. I hope that this doesn’t come across as hijacking the thread

or discounting Arne’s news. I really do love all of you and wish the

best for all 1598 of us and our families.

Rick

From:

[mailto: ] On Behalf Of A & J M

Sent: Saturday, January 03, 2009 10:11 PM

To:

Subject: PSC-support membership statistics update

Almost

1600 now!

Year

New Members

Total

1998

7

7

1999

45

52

2000

58

120

2001

94

214

2002

102

316

2003

133

449

2004

156

605

2005

231

836

2006

317

1153

2007

211

1364

2008

234

1598

Arne

UC 1977, PSC 2000

Alive and well in Minnesota

[Guest guest]

Ick,

Thanks for your honesty. I also had mixed emotions.

I am so very glad to have found this group and for once know that

everything is not in my head, which is what many doctors told me

before I found my current PCP. EVen some of the specialist he has

tried to find for me treated me like this. I am his only PSC patient

and thank god he is a former hospital chief and knew about the

disease and stays on top of things. When he doesn't have an answer I

turn here. When I cannot reach him or my newest hepatologist I turn

here. When things don't make sence to me, I turn here. When I need

to laugh some one will post something to meet that need and all I

have to do is long on to know that I am finally not a lone with this

disease.

I am saddend by the number of us who are suffering or have a fmaily

member who is suffering with this diease. There is so little known

about it, it's course, and it's treatment. I am heartend somedays by

the amount of pain in this grouop some times, but the flip of that is

also true as I am encouraged and amazed sometimes at the courage and

stregnth of the members of this group.

The success stories give me hope and the fights give me stregnth.

I believe that if we all work together some day some one will not

have to be in our shoes.

I am begining to struggle with how limited my life is becoming and

knowing what my future holds, but I hang on to the fact that the

future is not here and that I must savor each day and be grateful

that I can still work, though difficult. That my family helps me

out a lot and understands that days that I just can't do much of

anything.

I am rambling but I am so grateful for this group and finally not

feeling a lone!!!

Dawn

>

> This post brought about a lot of emotions from me. I'll share a

few here

> that I had about this statistic:

>

>

>

> Pros: I have learned a LOT from the experiences shared here and

I'm very

> happy to be a part of this very specific group. Several of you

have poured

> your hearts out and have been incredibly helpful. It is people

like you

> that put a smile on my face and I hope that one day I can be as

optimistic

> and encouraging as you are! I am very thankful for all of you who

are

> helping and sharing here.

>

>

>

> Cons: Obviously, there are 1597 other people here that have

varying degrees

> of a very difficult disease. My heart goes out to all of you and I

pray for

> all of you continually. There are also at least 1000 of you with

UC, if we

> use the common statistics. How many of us will die this year? And

next?

> How much are we held back as a result of this disease?

>

>

>

> It may be that I'm still struggling with the course of the disease

> especially now that I can see my LFT labs slowly and steadily

moving up.

> The point of Arne's post is that we are a community of people

helping each

> other out and trying to make it through a big hurdle in our lives.

It is

> nice to have more friends and a bigger community with PSC in

common. And it

> is amazing to see the exponential growth in this group. I hope

that this

> doesn't come across as hijacking the thread or discounting Arne's

news. I

> really do love all of you and wish the best for all 1598 of us and

our

> families.

>

>

>

> Rick

>

>

>

>

>

>

>

> From: [mailto:psc-

support ] On

> Behalf Of A&J M

> Sent: Saturday, January 03, 2009 10:11 PM

> To:

> Subject: PSC-support membership statistics update

>

>

>

> Almost 1600 now!

>

>

>

>

> Year

>

> New Members

>

> Total

>

>

> 1998

>

> 7

>

> 7

>

>

> 1999

>

> 45

>

> 52

>

>

> 2000

>

> 58

>

> 120

>

>

> 2001

>

> 94

>

> 214

>

>

> 2002

>

> 102

>

> 316

>

>

> 2003

>

> 133

>

> 449

>

>

> 2004

>

> 156

>

> 605

>

>

> 2005

>

> 231

>

> 836

>

>

> 2006

>

> 317

>

> 1153

>

>

> 2007

>

> 211

>

> 1364

>

>

> 2008

>

> 234

>

> 1598

>

>

>

>

>

> Arne

>

> UC 1977, PSC 2000

>

> Alive and well in Minnesota

>

[Guest guest]

Ick,

Thanks for your honesty. I also had mixed emotions.

I am so very glad to have found this group and for once know that

everything is not in my head, which is what many doctors told me

before I found my current PCP. EVen some of the specialist he has

tried to find for me treated me like this. I am his only PSC patient

and thank god he is a former hospital chief and knew about the

disease and stays on top of things. When he doesn't have an answer I

turn here. When I cannot reach him or my newest hepatologist I turn

here. When things don't make sence to me, I turn here. When I need

to laugh some one will post something to meet that need and all I

have to do is long on to know that I am finally not a lone with this

disease.

I am saddend by the number of us who are suffering or have a fmaily

member who is suffering with this diease. There is so little known

about it, it's course, and it's treatment. I am heartend somedays by

the amount of pain in this grouop some times, but the flip of that is

also true as I am encouraged and amazed sometimes at the courage and

stregnth of the members of this group.

The success stories give me hope and the fights give me stregnth.

I believe that if we all work together some day some one will not

have to be in our shoes.

I am begining to struggle with how limited my life is becoming and

knowing what my future holds, but I hang on to the fact that the

future is not here and that I must savor each day and be grateful

that I can still work, though difficult. That my family helps me

out a lot and understands that days that I just can't do much of

anything.

I am rambling but I am so grateful for this group and finally not

feeling a lone!!!

Dawn

>

> This post brought about a lot of emotions from me. I'll share a

few here

> that I had about this statistic:

>

>

>

> Pros: I have learned a LOT from the experiences shared here and

I'm very

> happy to be a part of this very specific group. Several of you

have poured

> your hearts out and have been incredibly helpful. It is people

like you

> that put a smile on my face and I hope that one day I can be as

optimistic

> and encouraging as you are! I am very thankful for all of you who

are

> helping and sharing here.

>

>

>

> Cons: Obviously, there are 1597 other people here that have

varying degrees

> of a very difficult disease. My heart goes out to all of you and I

pray for

> all of you continually. There are also at least 1000 of you with

UC, if we

> use the common statistics. How many of us will die this year? And

next?

> How much are we held back as a result of this disease?

>

>

>

> It may be that I'm still struggling with the course of the disease

> especially now that I can see my LFT labs slowly and steadily

moving up.

> The point of Arne's post is that we are a community of people

helping each

> other out and trying to make it through a big hurdle in our lives.

It is

> nice to have more friends and a bigger community with PSC in

common. And it

> is amazing to see the exponential growth in this group. I hope

that this

> doesn't come across as hijacking the thread or discounting Arne's

news. I

> really do love all of you and wish the best for all 1598 of us and

our

> families.

>

>

>

> Rick

>

>

>

>

>

>

>

> From: [mailto:psc-

support ] On

> Behalf Of A&J M

> Sent: Saturday, January 03, 2009 10:11 PM

> To:

> Subject: PSC-support membership statistics update

>

>

>

> Almost 1600 now!

>

>

>

>

> Year

>

> New Members

>

> Total

>

>

> 1998

>

> 7

>

> 7

>

>

> 1999

>

> 45

>

> 52

>

>

> 2000

>

> 58

>

> 120

>

>

> 2001

>

> 94

>

> 214

>

>

> 2002

>

> 102

>

> 316

>

>

> 2003

>

> 133

>

> 449

>

>

> 2004

>

> 156

>

> 605

>

>

> 2005

>

> 231

>

> 836

>

>

> 2006

>

> 317

>

> 1153

>

>

> 2007

>

> 211

>

> 1364

>

>

> 2008

>

> 234

>

> 1598

>

>

>

>

>

> Arne

>

> UC 1977, PSC 2000

>

> Alive and well in Minnesota

>

[Guest guest]

-Sorry Rick,

I didn't realize that I had misspelled your name till after I sent

send.

Dawn

-- In , " mdwblaze " wrote:

>

> Ick,

>

> Thanks for your honesty. I also had mixed emotions.

>

> I am so very glad to have found this group and for once know that

> everything is not in my head, which is what many doctors told me

> before I found my current PCP. EVen some of the specialist he has

> tried to find for me treated me like this. I am his only PSC

patient

> and thank god he is a former hospital chief and knew about the

> disease and stays on top of things. When he doesn't have an answer

I

> turn here. When I cannot reach him or my newest hepatologist I

turn

> here. When things don't make sence to me, I turn here. When I

need

> to laugh some one will post something to meet that need and all I

> have to do is long on to know that I am finally not a lone with

this

> disease.

>

> I am saddend by the number of us who are suffering or have a fmaily

> member who is suffering with this diease. There is so little known

> about it, it's course, and it's treatment. I am heartend somedays

by

> the amount of pain in this grouop some times, but the flip of that

is

> also true as I am encouraged and amazed sometimes at the courage

and

> stregnth of the members of this group.

>

> The success stories give me hope and the fights give me stregnth.

>

> I believe that if we all work together some day some one will not

> have to be in our shoes.

>

> I am begining to struggle with how limited my life is becoming and

> knowing what my future holds, but I hang on to the fact that the

> future is not here and that I must savor each day and be grateful

> that I can still work, though difficult. That my family helps me

> out a lot and understands that days that I just can't do much of

> anything.

>

> I am rambling but I am so grateful for this group and finally not

> feeling a lone!!!

>

> Dawn

>

>

>

>

>

> >

> > This post brought about a lot of emotions from me. I'll share a

> few here

> > that I had about this statistic:

> >

> >

> >

> > Pros: I have learned a LOT from the experiences shared here and

> I'm very

> > happy to be a part of this very specific group. Several of you

> have poured

> > your hearts out and have been incredibly helpful. It is people

> like you

> > that put a smile on my face and I hope that one day I can be as

> optimistic

> > and encouraging as you are! I am very thankful for all of you

who

> are

> > helping and sharing here.

> >

> >

> >

> > Cons: Obviously, there are 1597 other people here that have

> varying degrees

> > of a very difficult disease. My heart goes out to all of you and

I

> pray for

> > all of you continually. There are also at least 1000 of you with

> UC, if we

> > use the common statistics. How many of us will die this year?

And

> next?

> > How much are we held back as a result of this disease?

> >

> >

> >

> > It may be that I'm still struggling with the course of the disease

> > especially now that I can see my LFT labs slowly and steadily

> moving up.

> > The point of Arne's post is that we are a community of people

> helping each

> > other out and trying to make it through a big hurdle in our

lives.

> It is

> > nice to have more friends and a bigger community with PSC in

> common. And it

> > is amazing to see the exponential growth in this group. I hope

> that this

> > doesn't come across as hijacking the thread or discounting Arne's

> news. I

> > really do love all of you and wish the best for all 1598 of us

and

> our

> > families.

> >

> >

> >

> > Rick

> >

> >

> >

> >

> >

> >

> >

> > From: [mailto:psc-

> support ] On

> > Behalf Of A&J M

> > Sent: Saturday, January 03, 2009 10:11 PM

> > To:

> > Subject: PSC-support membership statistics update

> >

> >

> >

> > Almost 1600 now!

> >

> >

> >

> >

> > Year

> >

> > New Members

> >

> > Total

> >

> >

> > 1998

> >

> > 7

> >

> > 7

> >

> >

> > 1999

> >

> > 45

> >

> > 52

> >

> >

> > 2000

> >

> > 58

> >

> > 120

> >

> >

> > 2001

> >

> > 94

> >

> > 214

> >

> >

> > 2002

> >

> > 102

> >

> > 316

> >

> >

> > 2003

> >

> > 133

> >

> > 449

> >

> >

> > 2004

> >

> > 156

> >

> > 605

> >

> >

> > 2005

> >

> > 231

> >

> > 836

> >

> >

> > 2006

> >

> > 317

> >

> > 1153

> >

> >

> > 2007

> >

> > 211

> >

> > 1364

> >

> >

> > 2008

> >

> > 234

> >

> > 1598

> >

> >

> >

> >

> >

> > Arne

> >

> > UC 1977, PSC 2000

> >

> > Alive and well in Minnesota

> >

>

[Guest guest]

-Sorry Rick,

I didn't realize that I had misspelled your name till after I sent

send.

Dawn

-- In , " mdwblaze " wrote:

>

> Ick,

>

> Thanks for your honesty. I also had mixed emotions.

>

> I am so very glad to have found this group and for once know that

> everything is not in my head, which is what many doctors told me

> before I found my current PCP. EVen some of the specialist he has

> tried to find for me treated me like this. I am his only PSC

patient

> and thank god he is a former hospital chief and knew about the

> disease and stays on top of things. When he doesn't have an answer

I

> turn here. When I cannot reach him or my newest hepatologist I

turn

> here. When things don't make sence to me, I turn here. When I

need

> to laugh some one will post something to meet that need and all I

> have to do is long on to know that I am finally not a lone with

this

> disease.

>

> I am saddend by the number of us who are suffering or have a fmaily

> member who is suffering with this diease. There is so little known

> about it, it's course, and it's treatment. I am heartend somedays

by

> the amount of pain in this grouop some times, but the flip of that

is

> also true as I am encouraged and amazed sometimes at the courage

and

> stregnth of the members of this group.

>

> The success stories give me hope and the fights give me stregnth.

>

> I believe that if we all work together some day some one will not

> have to be in our shoes.

>

> I am begining to struggle with how limited my life is becoming and

> knowing what my future holds, but I hang on to the fact that the

> future is not here and that I must savor each day and be grateful

> that I can still work, though difficult. That my family helps me

> out a lot and understands that days that I just can't do much of

> anything.

>

> I am rambling but I am so grateful for this group and finally not

> feeling a lone!!!

>

> Dawn

>

>

>

>

>

> >

> > This post brought about a lot of emotions from me. I'll share a

> few here

> > that I had about this statistic:

> >

> >

> >

> > Pros: I have learned a LOT from the experiences shared here and

> I'm very

> > happy to be a part of this very specific group. Several of you

> have poured

> > your hearts out and have been incredibly helpful. It is people

> like you

> > that put a smile on my face and I hope that one day I can be as

> optimistic

> > and encouraging as you are! I am very thankful for all of you

who

> are

> > helping and sharing here.

> >

> >

> >

> > Cons: Obviously, there are 1597 other people here that have

> varying degrees

> > of a very difficult disease. My heart goes out to all of you and

I

> pray for

> > all of you continually. There are also at least 1000 of you with

> UC, if we

> > use the common statistics. How many of us will die this year?

And

> next?

> > How much are we held back as a result of this disease?

> >

> >

> >

> > It may be that I'm still struggling with the course of the disease

> > especially now that I can see my LFT labs slowly and steadily

> moving up.

> > The point of Arne's post is that we are a community of people

> helping each

> > other out and trying to make it through a big hurdle in our

lives.

> It is

> > nice to have more friends and a bigger community with PSC in

> common. And it

> > is amazing to see the exponential growth in this group. I hope

> that this

> > doesn't come across as hijacking the thread or discounting Arne's

> news. I

> > really do love all of you and wish the best for all 1598 of us

and

> our

> > families.

> >

> >

> >

> > Rick

> >

> >

> >

> >

> >

> >

> >

> > From: [mailto:psc-

> support ] On

> > Behalf Of A&J M

> > Sent: Saturday, January 03, 2009 10:11 PM

> > To:

> > Subject: PSC-support membership statistics update

> >

> >

> >

> > Almost 1600 now!

> >

> >

> >

> >

> > Year

> >

> > New Members

> >

> > Total

> >

> >

> > 1998

> >

> > 7

> >

> > 7

> >

> >

> > 1999

> >

> > 45

> >

> > 52

> >

> >

> > 2000

> >

> > 58

> >

> > 120

> >

> >

> > 2001

> >

> > 94

> >

> > 214

> >

> >

> > 2002

> >

> > 102

> >

> > 316

> >

> >

> > 2003

> >

> > 133

> >

> > 449

> >

> >

> > 2004

> >

> > 156

> >

> > 605

> >

> >

> > 2005

> >

> > 231

> >

> > 836

> >

> >

> > 2006

> >

> > 317

> >

> > 1153

> >

> >

> > 2007

> >

> > 211

> >

> > 1364

> >

> >

> > 2008

> >

> > 234

> >

> > 1598

> >

> >

> >

> >

> >

> > Arne

> >

> > UC 1977, PSC 2000

> >

> > Alive and well in Minnesota

> >

>

[Guest guest]

-Sorry Rick,

I didn't realize that I had misspelled your name till after I sent

send.

Dawn

-- In , " mdwblaze " wrote:

>

> Ick,

>

> Thanks for your honesty. I also had mixed emotions.

>

> I am so very glad to have found this group and for once know that

> everything is not in my head, which is what many doctors told me

> before I found my current PCP. EVen some of the specialist he has

> tried to find for me treated me like this. I am his only PSC

patient

> and thank god he is a former hospital chief and knew about the

> disease and stays on top of things. When he doesn't have an answer

I

> turn here. When I cannot reach him or my newest hepatologist I

turn

> here. When things don't make sence to me, I turn here. When I

need

> to laugh some one will post something to meet that need and all I

> have to do is long on to know that I am finally not a lone with

this

> disease.

>

> I am saddend by the number of us who are suffering or have a fmaily

> member who is suffering with this diease. There is so little known

> about it, it's course, and it's treatment. I am heartend somedays

by

> the amount of pain in this grouop some times, but the flip of that

is

> also true as I am encouraged and amazed sometimes at the courage

and

> stregnth of the members of this group.

>

> The success stories give me hope and the fights give me stregnth.

>

> I believe that if we all work together some day some one will not

> have to be in our shoes.

>

> I am begining to struggle with how limited my life is becoming and

> knowing what my future holds, but I hang on to the fact that the

> future is not here and that I must savor each day and be grateful

> that I can still work, though difficult. That my family helps me

> out a lot and understands that days that I just can't do much of

> anything.

>

> I am rambling but I am so grateful for this group and finally not

> feeling a lone!!!

>

> Dawn

>

>

>

>

>

> >

> > This post brought about a lot of emotions from me. I'll share a

> few here

> > that I had about this statistic:

> >

> >

> >

> > Pros: I have learned a LOT from the experiences shared here and

> I'm very

> > happy to be a part of this very specific group. Several of you

> have poured

> > your hearts out and have been incredibly helpful. It is people

> like you

> > that put a smile on my face and I hope that one day I can be as

> optimistic

> > and encouraging as you are! I am very thankful for all of you

who

> are

> > helping and sharing here.

> >

> >

> >

> > Cons: Obviously, there are 1597 other people here that have

> varying degrees

> > of a very difficult disease. My heart goes out to all of you and

I

> pray for

> > all of you continually. There are also at least 1000 of you with

> UC, if we

> > use the common statistics. How many of us will die this year?

And

> next?

> > How much are we held back as a result of this disease?

> >

> >

> >

> > It may be that I'm still struggling with the course of the disease

> > especially now that I can see my LFT labs slowly and steadily

> moving up.

> > The point of Arne's post is that we are a community of people

> helping each

> > other out and trying to make it through a big hurdle in our

lives.

> It is

> > nice to have more friends and a bigger community with PSC in

> common. And it

> > is amazing to see the exponential growth in this group. I hope

> that this

> > doesn't come across as hijacking the thread or discounting Arne's

> news. I

> > really do love all of you and wish the best for all 1598 of us

and

> our

> > families.

> >

> >

> >

> > Rick

> >

> >

> >

> >

> >

> >

> >

> > From: [mailto:psc-

> support ] On

> > Behalf Of A&J M

> > Sent: Saturday, January 03, 2009 10:11 PM

> > To:

> > Subject: PSC-support membership statistics update

> >

> >

> >

> > Almost 1600 now!

> >

> >

> >

> >

> > Year

> >

> > New Members

> >

> > Total

> >

> >

> > 1998

> >

> > 7

> >

> > 7

> >

> >

> > 1999

> >

> > 45

> >

> > 52

> >

> >

> > 2000

> >

> > 58

> >

> > 120

> >

> >

> > 2001

> >

> > 94

> >

> > 214

> >

> >

> > 2002

> >

> > 102

> >

> > 316

> >

> >

> > 2003

> >

> > 133

> >

> > 449

> >

> >

> > 2004

> >

> > 156

> >

> > 605

> >

> >

> > 2005

> >

> > 231

> >

> > 836

> >

> >

> > 2006

> >

> > 317

> >

> > 1153

> >

> >

> > 2007

> >

> > 211

> >

> > 1364

> >

> >

> > 2008

> >

> > 234

> >

> > 1598

> >

> >

> >

> >

> >

> > Arne

> >

> > UC 1977, PSC 2000

> >

> > Alive and well in Minnesota

> >

>

[Guest guest]

Dawn – since your doctors aren’t all that familiar with PSC is

it possible that you should be on a transplant list, and aren’t? Is there

nobody in your area who is totally up on this?

Nita

From:

[mailto: ] On Behalf

Of mdwblaze

Sent: Sunday, January 04, 2009 12:20 PM

To:

Subject: Re: PSC-support membership statistics update

Ick,

Thanks for your honesty. I also had mixed emotions.

I am so very glad to have found this group and for once know that

everything is not in my head, which is what many doctors told me

before I found my current PCP. EVen some of the specialist he has

tried to find for me treated me like this. I am his only PSC patient

and thank god he is a former hospital chief and knew about the

disease and stays on top of things. When he doesn't have an answer I

turn here. When I cannot reach him or my newest hepatologist I turn

here. When things don't make sence to me, I turn here. When I need

to laugh some one will post something to meet that need and all I

have to do is long on to know that I am finally not a lone with this

disease.

I am saddend by the number of us who are suffering or have a fmaily

member who is suffering with this diease. There is so little known

about it, it's course, and it's treatment. I am heartend somedays by

the amount of pain in this grouop some times, but the flip of that is

also true as I am encouraged and amazed sometimes at the courage and

stregnth of the members of this group.

The success stories give me hope and the fights give me stregnth.

I believe that if we all work together some day some one will not

have to be in our shoes.

I am begining to struggle with how limited my life is becoming and

knowing what my future holds, but I hang on to the fact that the

future is not here and that I must savor each day and be grateful

that I can still work, though difficult. That my family helps me

out a lot and understands that days that I just can't do much of

anything.

I am rambling but I am so grateful for this group and finally not

feeling a lone!!!

Dawn

>

> This post brought about a lot of emotions from me. I'll share a

few here

> that I had about this statistic:

>

>

>

> Pros: I have learned a LOT from the experiences shared here and

I'm very

> happy to be a part of this very specific group. Several of you

have poured

> your hearts out and have been incredibly helpful. It is people

like you

> that put a smile on my face and I hope that one day I can be as

optimistic

> and encouraging as you are! I am very thankful for all of you who

are

> helping and sharing here.

>

>

>

> Cons: Obviously, there are 1597 other people here that have

varying degrees

> of a very difficult disease. My heart goes out to all of you and I

pray for

> all of you continually. There are also at least 1000 of you with

UC, if we

> use the common statistics. How many of us will die this year? And

next?

> How much are we held back as a result of this disease?

>

>

>

> It may be that I'm still struggling with the course of the disease

> especially now that I can see my LFT labs slowly and steadily

moving up.

> The point of Arne's post is that we are a community of people

helping each

> other out and trying to make it through a big hurdle in our lives.

It is

> nice to have more friends and a bigger community with PSC in

common. And it

> is amazing to see the exponential growth in this group. I hope

that this

> doesn't come across as hijacking the thread or discounting Arne's

news. I

> really do love all of you and wish the best for all 1598 of us and

our

> families.

>

>

>

> Rick

>

>

>

>

>

>

>

> From:

[mailto:psc-

support ] On

> Behalf Of A & J M

> Sent: Saturday, January 03, 2009 10:11 PM

> To:

> Subject: PSC-support membership statistics update

>

>

>

> Almost 1600 now!

>

>

>

>

> Year

>

> New Members

>

> Total

>

>

> 1998

>

> 7

>

> 7

>

>

> 1999

>

> 45

>

> 52

>

>

> 2000

>

> 58

>

> 120

>

>

> 2001

>

> 94

>

> 214

>

>

> 2002

>

> 102

>

> 316

>

>

> 2003

>

> 133

>

> 449

>

>

> 2004

>

> 156

>

> 605

>

>

> 2005

>

> 231

>

> 836

>

>

> 2006

>

> 317

>

> 1153

>

>

> 2007

>

> 211

>

> 1364

>

>

> 2008

>

> 234

>

> 1598

>

>

>

>

>

> Arne

>

> UC 1977, PSC 2000

>

> Alive and well in Minnesota

>

[Guest guest]

Dawn – since your doctors aren’t all that familiar with PSC is

it possible that you should be on a transplant list, and aren’t? Is there

nobody in your area who is totally up on this?

Nita

From:

[mailto: ] On Behalf

Of mdwblaze

Sent: Sunday, January 04, 2009 12:20 PM

To:

Subject: Re: PSC-support membership statistics update

Ick,

Thanks for your honesty. I also had mixed emotions.

I am so very glad to have found this group and for once know that

everything is not in my head, which is what many doctors told me

before I found my current PCP. EVen some of the specialist he has

tried to find for me treated me like this. I am his only PSC patient

and thank god he is a former hospital chief and knew about the

disease and stays on top of things. When he doesn't have an answer I

turn here. When I cannot reach him or my newest hepatologist I turn

here. When things don't make sence to me, I turn here. When I need

to laugh some one will post something to meet that need and all I

have to do is long on to know that I am finally not a lone with this

disease.

I am saddend by the number of us who are suffering or have a fmaily

member who is suffering with this diease. There is so little known

about it, it's course, and it's treatment. I am heartend somedays by

the amount of pain in this grouop some times, but the flip of that is

also true as I am encouraged and amazed sometimes at the courage and

stregnth of the members of this group.

The success stories give me hope and the fights give me stregnth.

I believe that if we all work together some day some one will not

have to be in our shoes.

I am begining to struggle with how limited my life is becoming and

knowing what my future holds, but I hang on to the fact that the

future is not here and that I must savor each day and be grateful

that I can still work, though difficult. That my family helps me

out a lot and understands that days that I just can't do much of

anything.

I am rambling but I am so grateful for this group and finally not

feeling a lone!!!

Dawn

>

> This post brought about a lot of emotions from me. I'll share a

few here

> that I had about this statistic:

>

>

>

> Pros: I have learned a LOT from the experiences shared here and

I'm very

> happy to be a part of this very specific group. Several of you

have poured

> your hearts out and have been incredibly helpful. It is people

like you

> that put a smile on my face and I hope that one day I can be as

optimistic

> and encouraging as you are! I am very thankful for all of you who

are

> helping and sharing here.

>

>

>

> Cons: Obviously, there are 1597 other people here that have

varying degrees

> of a very difficult disease. My heart goes out to all of you and I

pray for

> all of you continually. There are also at least 1000 of you with

UC, if we

> use the common statistics. How many of us will die this year? And

next?

> How much are we held back as a result of this disease?

>

>

>

> It may be that I'm still struggling with the course of the disease

> especially now that I can see my LFT labs slowly and steadily

moving up.

> The point of Arne's post is that we are a community of people

helping each

> other out and trying to make it through a big hurdle in our lives.

It is

> nice to have more friends and a bigger community with PSC in

common. And it

> is amazing to see the exponential growth in this group. I hope

that this

> doesn't come across as hijacking the thread or discounting Arne's

news. I

> really do love all of you and wish the best for all 1598 of us and

our

> families.

>

>

>

> Rick

>

>

>

>

>

>

>

> From:

[mailto:psc-

support ] On

> Behalf Of A & J M

> Sent: Saturday, January 03, 2009 10:11 PM

> To:

> Subject: PSC-support membership statistics update

>

>

>

> Almost 1600 now!

>

>

>

>

> Year

>

> New Members

>

> Total

>

>

> 1998

>

> 7

>

> 7

>

>

> 1999

>

> 45

>

> 52

>

>

> 2000

>

> 58

>

> 120

>

>

> 2001

>

> 94

>

> 214

>

>

> 2002

>

> 102

>

> 316

>

>

> 2003

>

> 133

>

> 449

>

>

> 2004

>

> 156

>

> 605

>

>

> 2005

>

> 231

>

> 836

>

>

> 2006

>

> 317

>

> 1153

>

>

> 2007

>

> 211

>

> 1364

>

>

> 2008

>

> 234

>

> 1598

>

>

>

>

>

> Arne

>

> UC 1977, PSC 2000

>

> Alive and well in Minnesota

>

[Guest guest]

Rick -

Your emotions are real and probably held by most everyone in the group - including PSC'ers, family and caregivers. As a mom of a UC/PSC son and daughter of a UC'er, this group has helped me so much over the past 3 years.

In addition, this group is part of all three of the PSC Partners goals - the support group benefits many of us. This group fosters education and hopefully education of others via the extensive library Dave has put together. And last but not least, the goal of research for PSC treatment and cure is alive and growing. Through the dedication and focus of this group, including fund-raising and setting up research RFP proposals, as well as the research leadership group that awarded PSC research projects (Hurrah!), PSC research is being done and will be growing!

My enthusiasm and excitement as a member of this group crosses each of these goals. Like others, I appreciate the friendship, caring and "family" relationships that I have developed with all of you. Personally, my commitment to fundraising for PSC research is stronger than ever - because we are key drivers in building and keeping the focus on PSC research. Who cares more about research and finding a cure than all of us? Thank goodness there are researchers out there that have passion and commitment too.

I too wish everyone a happy, healthy (staying healthy, feeling better, and/or a great improvement from 2008, or all of the above!) 2009! And during the dark January days (which I really don't like), we can know each day adds more sunlight and moves us closer to the Chicago PSC conference. If you have not attended before, try to come - it's an amazing experience to meet those you've met via the internet! And you will learn so much.

Joanne H

mom of , 18, UC/PSC 2-06; JRA 98

This post brought about a lot of emotions from me. I’ll share a few here that I had about this statistic:

Pros: I have learned a LOT from the experiences shared here and I’m very happy to be a part of this very specific group. ...Cons: Obviously, there are 1597 other people here that have varying degrees of a very difficult disease. My heart goes out to all of you and I pray for all of you continually. ... I hope that this doesn’t come across as hijacking the thread or discounting Arne’s news. I really do love all of you and wish the best for all 1598 of us and our families.

Rick

..

[Guest guest]

Rick -

Your emotions are real and probably held by most everyone in the group - including PSC'ers, family and caregivers. As a mom of a UC/PSC son and daughter of a UC'er, this group has helped me so much over the past 3 years.

In addition, this group is part of all three of the PSC Partners goals - the support group benefits many of us. This group fosters education and hopefully education of others via the extensive library Dave has put together. And last but not least, the goal of research for PSC treatment and cure is alive and growing. Through the dedication and focus of this group, including fund-raising and setting up research RFP proposals, as well as the research leadership group that awarded PSC research projects (Hurrah!), PSC research is being done and will be growing!

My enthusiasm and excitement as a member of this group crosses each of these goals. Like others, I appreciate the friendship, caring and "family" relationships that I have developed with all of you. Personally, my commitment to fundraising for PSC research is stronger than ever - because we are key drivers in building and keeping the focus on PSC research. Who cares more about research and finding a cure than all of us? Thank goodness there are researchers out there that have passion and commitment too.

I too wish everyone a happy, healthy (staying healthy, feeling better, and/or a great improvement from 2008, or all of the above!) 2009! And during the dark January days (which I really don't like), we can know each day adds more sunlight and moves us closer to the Chicago PSC conference. If you have not attended before, try to come - it's an amazing experience to meet those you've met via the internet! And you will learn so much.

Joanne H

mom of , 18, UC/PSC 2-06; JRA 98

This post brought about a lot of emotions from me. I’ll share a few here that I had about this statistic:

Pros: I have learned a LOT from the experiences shared here and I’m very happy to be a part of this very specific group. ...Cons: Obviously, there are 1597 other people here that have varying degrees of a very difficult disease. My heart goes out to all of you and I pray for all of you continually. ... I hope that this doesn’t come across as hijacking the thread or discounting Arne’s news. I really do love all of you and wish the best for all 1598 of us and our families.

Rick

..

[Guest guest]

Rick -

Your emotions are real and probably held by most everyone in the group - including PSC'ers, family and caregivers. As a mom of a UC/PSC son and daughter of a UC'er, this group has helped me so much over the past 3 years.

In addition, this group is part of all three of the PSC Partners goals - the support group benefits many of us. This group fosters education and hopefully education of others via the extensive library Dave has put together. And last but not least, the goal of research for PSC treatment and cure is alive and growing. Through the dedication and focus of this group, including fund-raising and setting up research RFP proposals, as well as the research leadership group that awarded PSC research projects (Hurrah!), PSC research is being done and will be growing!

My enthusiasm and excitement as a member of this group crosses each of these goals. Like others, I appreciate the friendship, caring and "family" relationships that I have developed with all of you. Personally, my commitment to fundraising for PSC research is stronger than ever - because we are key drivers in building and keeping the focus on PSC research. Who cares more about research and finding a cure than all of us? Thank goodness there are researchers out there that have passion and commitment too.

I too wish everyone a happy, healthy (staying healthy, feeling better, and/or a great improvement from 2008, or all of the above!) 2009! And during the dark January days (which I really don't like), we can know each day adds more sunlight and moves us closer to the Chicago PSC conference. If you have not attended before, try to come - it's an amazing experience to meet those you've met via the internet! And you will learn so much.

Joanne H

mom of , 18, UC/PSC 2-06; JRA 98

This post brought about a lot of emotions from me. I’ll share a few here that I had about this statistic:

Pros: I have learned a LOT from the experiences shared here and I’m very happy to be a part of this very specific group. ...Cons: Obviously, there are 1597 other people here that have varying degrees of a very difficult disease. My heart goes out to all of you and I pray for all of you continually. ... I hope that this doesn’t come across as hijacking the thread or discounting Arne’s news. I really do love all of you and wish the best for all 1598 of us and our families.

Rick

..

[Guest guest]

Joanne,

Thank you for the reply. I too am excited about the steps that

are being taken and I hope that things will really get ramped up soon. Although

I’m still very new to this group, I am hoping to get to know some of you and I

am going to make the time to attend the Chicago PSC Partners meeting this year.

My wife isn’t really understanding how this disease is chronic and really can

and does affect day to day living as well as long term survival so I hope that

by attending and meeting some fellow PSCers that it may sink in with her that we

can’t ignore this thing forever and that there may be challenges ahead.

Rick

From:

[mailto: ] On Behalf

Of Copper

Sent: Sunday, January 04, 2009 2:26 PM

To:

Subject: RE: PSC-support membership statistics update

Rick -

Your emotions are real and probably held by most everyone in the

group - including PSC'ers, family and caregivers. As a mom of a UC/PSC

son and daughter of a UC'er, this group has helped me so much over the past 3

years.

In addition, this group is part of all three of the PSC Partners

goals - the support group benefits many of us. This group fosters

education and hopefully education of others via the extensive library Dave

has put together. And last but not least, the goal of research for

PSC treatment and cure is alive and growing. Through the dedication and

focus of this group, including fund-raising and setting up research RFP

proposals, as well as the research leadership group that awarded PSC research

projects (Hurrah!), PSC research is being done and will be growing!

My enthusiasm and excitement as a member of this group crosses each

of these goals. Like others, I appreciate the friendship, caring and

" family " relationships that I have developed with all of you. Personally,

my commitment to fundraising for PSC research is stronger than ever - because

we are key drivers in building and keeping the focus on PSC research. Who

cares more about research and finding a cure than all of us? Thank

goodness there are researchers out there that have passion and commitment too.

I too wish everyone a happy, healthy (staying healthy, feeling

better, and/or a great improvement from 2008, or all of the above!) 2009!

And during the dark January days (which I really don't like), we can know each

day adds more sunlight and moves us closer to the Chicago PSC conference.

If you have not attended before, try to come - it's an amazing experience to

meet those you've met via the internet! And you will learn so much.

Joanne H

mom of , 18, UC/PSC 2-06; JRA 98

This post brought about a lot of

emotions from me. I’ll share a few here that I had about this statistic:

Pros: I have learned a LOT from

the experiences shared here and I’m very happy to be a part of this very

specific group. ...Cons: Obviously, there are 1597 other people here

that have varying degrees of a very difficult disease. My heart goes out

to all of you and I pray for all of you continually. ... I hope that this doesn’t come across as

hijacking the thread or discounting Arne’s news. I really do love all of

you and wish the best for all 1598 of us and our families.

Rick

..

[Guest guest]

Joanne,

Thank you for the reply. I too am excited about the steps that

are being taken and I hope that things will really get ramped up soon. Although

I’m still very new to this group, I am hoping to get to know some of you and I

am going to make the time to attend the Chicago PSC Partners meeting this year.

My wife isn’t really understanding how this disease is chronic and really can

and does affect day to day living as well as long term survival so I hope that

by attending and meeting some fellow PSCers that it may sink in with her that we

can’t ignore this thing forever and that there may be challenges ahead.

Rick

From:

[mailto: ] On Behalf

Of Copper

Sent: Sunday, January 04, 2009 2:26 PM

To:

Subject: RE: PSC-support membership statistics update

Rick -

Your emotions are real and probably held by most everyone in the

group - including PSC'ers, family and caregivers. As a mom of a UC/PSC

son and daughter of a UC'er, this group has helped me so much over the past 3

years.

In addition, this group is part of all three of the PSC Partners

goals - the support group benefits many of us. This group fosters

education and hopefully education of others via the extensive library Dave

has put together. And last but not least, the goal of research for

PSC treatment and cure is alive and growing. Through the dedication and

focus of this group, including fund-raising and setting up research RFP

proposals, as well as the research leadership group that awarded PSC research

projects (Hurrah!), PSC research is being done and will be growing!

My enthusiasm and excitement as a member of this group crosses each

of these goals. Like others, I appreciate the friendship, caring and

" family " relationships that I have developed with all of you. Personally,

my commitment to fundraising for PSC research is stronger than ever - because

we are key drivers in building and keeping the focus on PSC research. Who

cares more about research and finding a cure than all of us? Thank

goodness there are researchers out there that have passion and commitment too.

I too wish everyone a happy, healthy (staying healthy, feeling

better, and/or a great improvement from 2008, or all of the above!) 2009!

And during the dark January days (which I really don't like), we can know each

day adds more sunlight and moves us closer to the Chicago PSC conference.

If you have not attended before, try to come - it's an amazing experience to

meet those you've met via the internet! And you will learn so much.

Joanne H

mom of , 18, UC/PSC 2-06; JRA 98

This post brought about a lot of

emotions from me. I’ll share a few here that I had about this statistic:

Pros: I have learned a LOT from

the experiences shared here and I’m very happy to be a part of this very

specific group. ...Cons: Obviously, there are 1597 other people here

that have varying degrees of a very difficult disease. My heart goes out

to all of you and I pray for all of you continually. ... I hope that this doesn’t come across as

hijacking the thread or discounting Arne’s news. I really do love all of

you and wish the best for all 1598 of us and our families.

Rick

..

[Guest guest]

Joanne,

Thank you for the reply. I too am excited about the steps that

are being taken and I hope that things will really get ramped up soon. Although

I’m still very new to this group, I am hoping to get to know some of you and I

am going to make the time to attend the Chicago PSC Partners meeting this year.

My wife isn’t really understanding how this disease is chronic and really can

and does affect day to day living as well as long term survival so I hope that

by attending and meeting some fellow PSCers that it may sink in with her that we

can’t ignore this thing forever and that there may be challenges ahead.

Rick

From:

[mailto: ] On Behalf

Of Copper

Sent: Sunday, January 04, 2009 2:26 PM

To:

Subject: RE: PSC-support membership statistics update

Rick -

Your emotions are real and probably held by most everyone in the

group - including PSC'ers, family and caregivers. As a mom of a UC/PSC

son and daughter of a UC'er, this group has helped me so much over the past 3

years.

In addition, this group is part of all three of the PSC Partners

goals - the support group benefits many of us. This group fosters

education and hopefully education of others via the extensive library Dave

has put together. And last but not least, the goal of research for

PSC treatment and cure is alive and growing. Through the dedication and

focus of this group, including fund-raising and setting up research RFP

proposals, as well as the research leadership group that awarded PSC research

projects (Hurrah!), PSC research is being done and will be growing!

My enthusiasm and excitement as a member of this group crosses each

of these goals. Like others, I appreciate the friendship, caring and

" family " relationships that I have developed with all of you. Personally,

my commitment to fundraising for PSC research is stronger than ever - because

we are key drivers in building and keeping the focus on PSC research. Who

cares more about research and finding a cure than all of us? Thank

goodness there are researchers out there that have passion and commitment too.

I too wish everyone a happy, healthy (staying healthy, feeling

better, and/or a great improvement from 2008, or all of the above!) 2009!

And during the dark January days (which I really don't like), we can know each

day adds more sunlight and moves us closer to the Chicago PSC conference.

If you have not attended before, try to come - it's an amazing experience to

meet those you've met via the internet! And you will learn so much.

Joanne H

mom of , 18, UC/PSC 2-06; JRA 98

This post brought about a lot of

emotions from me. I’ll share a few here that I had about this statistic:

Pros: I have learned a LOT from

the experiences shared here and I’m very happy to be a part of this very

specific group. ...Cons: Obviously, there are 1597 other people here

that have varying degrees of a very difficult disease. My heart goes out

to all of you and I pray for all of you continually. ... I hope that this doesn’t come across as

hijacking the thread or discounting Arne’s news. I really do love all of

you and wish the best for all 1598 of us and our families.

Rick

..

[Guest guest]

Cons: How many of us

will die this year? And next? How much are we held back as

a result of this disease?

Hope you don’t mind Rick – I am going to hijack

this thread. I know people (especially

new comers) are scared, you have a right to be, PSC can be nasty. We don’t know how many (members,

family, friends or caregivers) will die this year, life is ugly like that.

What we do know is this, lots of people are working every day to find

new treatments and/or a cure for PSC.

You can chose to be a part of that, spreading the word about PSC-Partners,

collecting donations or promoting organ donation. We’re all on the ground floor here,

the trail blazers in unfound territory and there’s only one way to go –

straight up! You don’t have

to be held back by this disease, you can move forward one step at a time. How do you feel today? Pretty good? Good for you!

We have to play with the cards we’re given. Just ask ole Doyle Brunson (poker champ)

from his web site - He was given 3 months to live (cancer) yet here he is 40

years later. No one knows what the

future holds for us, he called cancers bluff and won. He was dealt a 10 & 2 and made poker

history with it. We have that very

same opportunity, all we need is a fighting spirit to make our own history. How do you feel today?

Barb in Texas - Together in the Fight - Whatever it

Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007

@ Baylor/Dallas

[Guest guest]

Rick -

That is wonderful that you and your wife will be coming to Chicago!

Joanne H

(, Ca)

Although I’m still very new to this group, I am hoping to get to know some of you and I am going to make the time to attend the Chicago PSC Partners meeting this year.

..

[Guest guest]

Rick -

That is wonderful that you and your wife will be coming to Chicago!

Joanne H

(, Ca)

Although I’m still very new to this group, I am hoping to get to know some of you and I am going to make the time to attend the Chicago PSC Partners meeting this year.

..

[Guest guest]

Barb,

I do not mind at all. Although I am one of the newcomers

here, I have already learned that when you speak – people listen because

your posts are filled with wisdom and encouragement. I was debating

whether to include that language because it can be scary to ready. My

point in this is that a person could easily feel helpless and doomed with this

diagnosis and especially so if they have not been well informed and coached by

their physicians. I want to be more positive about my diagnosis and

look past the years of a lost battle with UC, but there are still days that I

fail. There was something about Arne’s membership statistics post

that made me reflect and hear all of those pessimistic thoughts again.

And to answer your questions, today I do feel well. There

are a lot of good things in my life right now. It is tomorrow, next

month, next year that concern me. But, I am working on that. Thank

you for your post. It is a good reminder that there is hope.

Rick

From:

[mailto: ] On Behalf

Of Barb Henshaw

Sent: Sunday, January 04, 2009 3:11 PM

To:

Subject: RE: PSC-support membership statistics update

Cons: How many of us will die this

year? And next? How much are we held back as a result of this

disease?

Hope

you don’t mind Rick – I am going to hijack this thread. I

know people (especially new comers) are scared, you have a right to be, PSC can

be nasty. We don’t know how many (members, family, friends or

caregivers) will die this year, life is ugly like that.

What we

do know is this, lots of people are working every day to find new treatments

and/or a cure for PSC. You can chose to be a part of that, spreading the

word about PSC-Partners, collecting donations or promoting organ donation.

We’re all on the ground floor here, the trail blazers in unfound

territory and there’s only one way to go – straight up! You

don’t have to be held back by this disease, you can move forward one step

at a time. How do you feel today? Pretty good? Good for you!

We have

to play with the cards we’re given. Just ask ole Doyle Brunson

(poker champ) from his web site - He was given 3 months to live (cancer) yet

here he is 40 years later. No one knows what the future holds for us, he

called cancers bluff and won. He was dealt a 10 & 2 and made poker

history with it. We have that very same opportunity, all we need is a

fighting spirit to make our own history. How do you feel today?

Barb in Texas - Together in the Fight - Whatever it

Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @

Baylor/Dallas

[Guest guest]

Barb,

I do not mind at all. Although I am one of the newcomers

here, I have already learned that when you speak – people listen because

your posts are filled with wisdom and encouragement. I was debating

whether to include that language because it can be scary to ready. My

point in this is that a person could easily feel helpless and doomed with this

diagnosis and especially so if they have not been well informed and coached by

their physicians. I want to be more positive about my diagnosis and

look past the years of a lost battle with UC, but there are still days that I

fail. There was something about Arne’s membership statistics post

that made me reflect and hear all of those pessimistic thoughts again.

And to answer your questions, today I do feel well. There

are a lot of good things in my life right now. It is tomorrow, next

month, next year that concern me. But, I am working on that. Thank

you for your post. It is a good reminder that there is hope.

Rick

From:

[mailto: ] On Behalf

Of Barb Henshaw

Sent: Sunday, January 04, 2009 3:11 PM

To:

Subject: RE: PSC-support membership statistics update

Cons: How many of us will die this

year? And next? How much are we held back as a result of this

disease?

Hope

you don’t mind Rick – I am going to hijack this thread. I

know people (especially new comers) are scared, you have a right to be, PSC can

be nasty. We don’t know how many (members, family, friends or

caregivers) will die this year, life is ugly like that.

What we

do know is this, lots of people are working every day to find new treatments

and/or a cure for PSC. You can chose to be a part of that, spreading the

word about PSC-Partners, collecting donations or promoting organ donation.

We’re all on the ground floor here, the trail blazers in unfound

territory and there’s only one way to go – straight up! You

don’t have to be held back by this disease, you can move forward one step

at a time. How do you feel today? Pretty good? Good for you!

We have

to play with the cards we’re given. Just ask ole Doyle Brunson

(poker champ) from his web site - He was given 3 months to live (cancer) yet

here he is 40 years later. No one knows what the future holds for us, he

called cancers bluff and won. He was dealt a 10 & 2 and made poker

history with it. We have that very same opportunity, all we need is a

fighting spirit to make our own history. How do you feel today?

Barb in Texas - Together in the Fight - Whatever it

Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @

Baylor/Dallas

[Guest guest]

Barb,

I do not mind at all. Although I am one of the newcomers

here, I have already learned that when you speak – people listen because

your posts are filled with wisdom and encouragement. I was debating

whether to include that language because it can be scary to ready. My

point in this is that a person could easily feel helpless and doomed with this

diagnosis and especially so if they have not been well informed and coached by

their physicians. I want to be more positive about my diagnosis and

look past the years of a lost battle with UC, but there are still days that I

fail. There was something about Arne’s membership statistics post

that made me reflect and hear all of those pessimistic thoughts again.

And to answer your questions, today I do feel well. There

are a lot of good things in my life right now. It is tomorrow, next

month, next year that concern me. But, I am working on that. Thank

you for your post. It is a good reminder that there is hope.

Rick

From:

[mailto: ] On Behalf

Of Barb Henshaw

Sent: Sunday, January 04, 2009 3:11 PM

To:

Subject: RE: PSC-support membership statistics update

Cons: How many of us will die this

year? And next? How much are we held back as a result of this

disease?

Hope

you don’t mind Rick – I am going to hijack this thread. I

know people (especially new comers) are scared, you have a right to be, PSC can

be nasty. We don’t know how many (members, family, friends or

caregivers) will die this year, life is ugly like that.

What we

do know is this, lots of people are working every day to find new treatments

and/or a cure for PSC. You can chose to be a part of that, spreading the

word about PSC-Partners, collecting donations or promoting organ donation.

We’re all on the ground floor here, the trail blazers in unfound

territory and there’s only one way to go – straight up! You

don’t have to be held back by this disease, you can move forward one step

at a time. How do you feel today? Pretty good? Good for you!

We have

to play with the cards we’re given. Just ask ole Doyle Brunson

(poker champ) from his web site - He was given 3 months to live (cancer) yet

here he is 40 years later. No one knows what the future holds for us, he

called cancers bluff and won. He was dealt a 10 & 2 and made poker

history with it. We have that very same opportunity, all we need is a

fighting spirit to make our own history. How do you feel today?

Barb in Texas - Together in the Fight - Whatever it

Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @

Baylor/Dallas

[Guest guest]

My MEDL score is 7, I don't qualify and the effects on ones life

don't matter, just the numbers. My new Hepatoligist is PSC knowledge

and is on a rsearch team for it. From what I understand from my

Doctor, My PSC is now effecting my Kidney's and Pancreas. They are

confused by this because I DON'T have UC or Chrons though they are

begining to question if I have COlitis without the Ulcers. I have

been trying to study some on Small Duct PSC(what I have), which from

what I can tell is similar to PBC to see how the course may differ

from " traditional " PSC.

I am lucky (at least I think so) because I am a Counselor in a very

small private practice and everyone in the practice has health

problems. The fatigue is getting bad, and honestly I am having a bad

day today so it's more of a problems today then it is on other days.

I will be on the phon ein the morning ecause I have this pressure in

my back on the upper right side and " twingy " pain in my URQ. I am

itching more then normal so I think I might be in the early part of a

cholangitis attack. Not sure. It will get better, though, it always

does. ANyway thanks for the concern

Dawn

>

> Dawn - since your doctors aren't all that familiar with PSC is it

possible

> that you should be on a transplant list, and aren't? Is there

nobody in your

> area who is totally up on this?

>

>

> >

>

[Guest guest]

My MEDL score is 7, I don't qualify and the effects on ones life

don't matter, just the numbers. My new Hepatoligist is PSC knowledge

and is on a rsearch team for it. From what I understand from my

Doctor, My PSC is now effecting my Kidney's and Pancreas. They are

confused by this because I DON'T have UC or Chrons though they are

begining to question if I have COlitis without the Ulcers. I have

been trying to study some on Small Duct PSC(what I have), which from

what I can tell is similar to PBC to see how the course may differ

from " traditional " PSC.

I am lucky (at least I think so) because I am a Counselor in a very

small private practice and everyone in the practice has health

problems. The fatigue is getting bad, and honestly I am having a bad

day today so it's more of a problems today then it is on other days.

I will be on the phon ein the morning ecause I have this pressure in

my back on the upper right side and " twingy " pain in my URQ. I am

itching more then normal so I think I might be in the early part of a

cholangitis attack. Not sure. It will get better, though, it always

does. ANyway thanks for the concern

Dawn

>

> Dawn - since your doctors aren't all that familiar with PSC is it

possible

> that you should be on a transplant list, and aren't? Is there

nobody in your

> area who is totally up on this?

>

>

> >

>