Re: PSC-support membership statistics update

[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]

Rick,

I’m glad to hear that you and your wife will be joining us at

the conference in Chicago. Not only will you get an update on the latest

medical information about PSC, but you will both have the chance to meet fellow

PSCers and caregivers who are all eager to share experiences, questions,

advice, etc. Looking forward to meeting you.

Ricky

PSC 2003

From:

[mailto: ] On Behalf

Of Rick Kamp

Sent: Sunday, January 04, 2009 1:10 PM

To:

Subject: RE: PSC-support membership statistics update

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

[Guest guest]

Rick,

I’m glad to hear that you and your wife will be joining us at

the conference in Chicago. Not only will you get an update on the latest

medical information about PSC, but you will both have the chance to meet fellow

PSCers and caregivers who are all eager to share experiences, questions,

advice, etc. Looking forward to meeting you.

Ricky

PSC 2003

From:

[mailto: ] On Behalf

Of Rick Kamp

Sent: Sunday, January 04, 2009 1:10 PM

To:

Subject: RE: PSC-support membership statistics update

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

[Guest guest]

Rick,

I’m glad to hear that you and your wife will be joining us at

the conference in Chicago. Not only will you get an update on the latest

medical information about PSC, but you will both have the chance to meet fellow

PSCers and caregivers who are all eager to share experiences, questions,

advice, etc. Looking forward to meeting you.

Ricky

PSC 2003

From:

[mailto: ] On Behalf

Of Rick Kamp

Sent: Sunday, January 04, 2009 1:10 PM

To:

Subject: RE: PSC-support membership statistics update

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

[Guest guest]

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

From:

[mailto: ] On Behalf

Of mdwblaze

Sent: Sunday, January 04, 2009 3:43 PM

To:

Subject: Re: PSC-support membership statistics update

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]

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

From:

[mailto: ] On Behalf

Of mdwblaze

Sent: Sunday, January 04, 2009 3:43 PM

To:

Subject: Re: PSC-support membership statistics update

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]

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

From:

[mailto: ] On Behalf

Of mdwblaze

Sent: Sunday, January 04, 2009 3:43 PM

To:

Subject: Re: PSC-support membership statistics update

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]

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: ] 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

_,_._,___

[Guest guest]

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: ] 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

_,_._,___

[Guest guest]

RickyIs there any available recordings of the conference?ThanksShaulSent via BlackBerry by AT&TFrom: "Ricky Safer" Date: Sun, 4 Jan 2009 15:46:55 -0700To: < >Subject: RE: PSC-support membership statistics update Rick, I’m glad to hear that you and your wife will be joining us at the conference in Chicago. Not only will you get an update on the latest medical information about PSC, but you will both have the chance to meet fellow PSCers and caregivers who are all eager to share experiences, questions, advice, etc. Looking forward to meeting you. Ricky PSC 2003 From: [mailto: ] On Behalf Of Rick KampSent: Sunday, January 04, 2009 1:10 PMTo: Subject: RE: PSC-support membership statistics update 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

[Guest guest]

RickyIs there any available recordings of the conference?ThanksShaulSent via BlackBerry by AT&TFrom: "Ricky Safer" Date: Sun, 4 Jan 2009 15:46:55 -0700To: < >Subject: RE: PSC-support membership statistics update Rick, I’m glad to hear that you and your wife will be joining us at the conference in Chicago. Not only will you get an update on the latest medical information about PSC, but you will both have the chance to meet fellow PSCers and caregivers who are all eager to share experiences, questions, advice, etc. Looking forward to meeting you. Ricky PSC 2003 From: [mailto: ] On Behalf Of Rick KampSent: Sunday, January 04, 2009 1:10 PMTo: Subject: RE: PSC-support membership statistics update 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

[Guest guest]

Dawn,

I had kidney issues for the first time

when I was five weeks prior to transplant. Do you know what your creatine

value is? Knowing what I know now, I would be concerned.

Joe

PSC and UC-1990, Transplant-2007

From:

[mailto: ] On Behalf Of mdwblaze

Sent: Sunday, January 04, 2009

3:43 PM

To:

Subject: Re:

PSC-support membership statistics update

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]

Dawn,

I had kidney issues for the first time

when I was five weeks prior to transplant. Do you know what your creatine

value is? Knowing what I know now, I would be concerned.

Joe

PSC and UC-1990, Transplant-2007

From:

[mailto: ] On Behalf Of mdwblaze

Sent: Sunday, January 04, 2009

3:43 PM

To:

Subject: Re:

PSC-support membership statistics update

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]

Dawn,

I had kidney issues for the first time

when I was five weeks prior to transplant. Do you know what your creatine

value is? Knowing what I know now, I would be concerned.

Joe

PSC and UC-1990, Transplant-2007

From:

[mailto: ] On Behalf Of mdwblaze

Sent: Sunday, January 04, 2009

3:43 PM

To:

Subject: Re:

PSC-support membership statistics update

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]

So far I have not had cholangitis in 2008, though I think I may be

developing it now. 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]

So far I have not had cholangitis in 2008, though I think I may be

developing it now. 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]

So far I have not had cholangitis in 2008, though I think I may be

developing it now. 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 Serum Creatine level was 0.53 (0.50-1.20) in November which is on

the low end of normal. My Urinary Creatine level was 1496 (600-

1800). My urinary Citrate was low, Oxalate was Very High, Phosphorus

was moderately High, Ph was low, Total Volume was low, Calcium

Oxalate was slightly high, and Uric Acid was twice the high end of

normal. My Bun Creatine Ratio is high at 32.9. I am still trying to

figure all of this out. If I had IBD this would make some sence but

so far they have not given me that diagnoses, but they are beginning

to talk about it. Please let me know if you have any insight.

Dawn

-- In , " Joe Berry "

wrote:

>

> Dawn,

>

> I had kidney issues for the first time when I was five weeks prior

to

> transplant. Do you know what your creatine value is? Knowing what

I know

> now, I would be concerned.

>

> Joe

>

> PSC and UC-1990, Transplant-2007

>

>

>

> _____

>

> From: [mailto:psc-

support ] On

> Behalf Of mdwblaze

> Sent: Sunday, January 04, 2009 3:43 PM

> To:

> Subject: Re: PSC-support membership statistics update

>

>

>

> 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]

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

[Guest guest]

Shaul,

We have created a website for each of the conferences which

include photos and all the PowerPoint presentations from all the speakers. If

you’d like to access the websites from any of our past conferences

(2005/2006/2007/2008), we charge a nominal fee of $10 per conference to access

the information. If you’re interested, you can pay by PayPal or send in a

check to:

PSC Partners Seeking a Cure 5237 So. Kenton Way Englewood

CO 80111

If you have any questions, just let me know.

Ricky PSC 2003

From:

[mailto: ] On Behalf

Of CholangitisSuprt@...

Sent: Sunday, January 04, 2009 7:13 PM

To:

Subject: Re: PSC-support membership statistics update

Ricky

Is there any available recordings of the conference?

Thanks

Shaul

Sent via BlackBerry by AT & T

PSC 2003

[Guest guest]

Arne,

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

important message to all of us!!

Ricky

PSC 2003

From:

[mailto: ] On Behalf

Of A & J M

Sent: Sunday, January 04, 2009 8:36 PM

To:

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?

[Guest guest]

Arne,

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

important message to all of us!!

Ricky

PSC 2003

From:

[mailto: ] On Behalf

Of A & J M

Sent: Sunday, January 04, 2009 8:36 PM

To:

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?

[Guest guest]

I was diagnosed with OSC and UC in 1990;

however, since then my biopsies from colonoscopies have not been positive for

UC. In October I had mild colitis according to the biopsies; however, it

took the biopsy to determine that because the doctor saw none when he performed

the procedure. I’d say you have some form of colitis.

Unfortunately I do not have any further

insight. Your creatinine level is good and I think that is an indication

of kidney function. Some of your other numbers are unusual.

Sorry I couldn’t help further.

I hope that you remain well..

Joe

[Guest guest]

I was diagnosed with OSC and UC in 1990;

however, since then my biopsies from colonoscopies have not been positive for

UC. In October I had mild colitis according to the biopsies; however, it

took the biopsy to determine that because the doctor saw none when he performed

the procedure. I’d say you have some form of colitis.

Unfortunately I do not have any further

insight. Your creatinine level is good and I think that is an indication

of kidney function. Some of your other numbers are unusual.

Sorry I couldn’t help further.

I hope that you remain well..

Joe

[Guest guest]

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

>