Re: PSC progression

[Guest guest]

must be stage 4, then, as he has bridging fibrosis and cirrhosis. His one GI said he's probably had this for 10 years. I pointed out that 's only 8, to which he said "that tells you how bad it is, then". That being the case, I'm just being thankful he's not in liver failure at this point. AmiTim Romlein wrote: > What

are varicies and ascites? I've heard them mentioned, and know> does not have them, but since they seem to be a possiblity for> him at some point, I figured I should find out what they are.>Varicies are swollen veins (usually in the esophagus) that are causeby portal hypertension. Portal hypertension can occur when cirrhosisrestricts the flow of blood through the liver, causing it to back upand produce ballooning in the portal venous system. If the variciesrupture the resulting blood loss can be fatal. Such a rupture is oftenreferred to as a "bleed" and may cause vomiting up large quanties ofblood. Varicies are monitored by an endoscopic examination of theesophagus (basically the first part of an ERCP) and controlled bybanding, sclerotherapy or beta blockers to reduce portal pressure.http://www.mayoclinic.com/health/esophageal-varices/AN00991http://www.gastromd.com/education/esophagealvarices.htmlhttp://www.emedicine.com/med/topic745.htmAscites is the accumulation of fluid within the abdominal cavity. Thiscauses the swollen belly appearance of patients with end stage liverdisease. http://www.emedicine.com/med/topic173.htm> Also, I'm a little confused in certain situations when they> consinder "later in the disease course". Do they mean from when> when diagnosed or when disease may have actually began? > already had many many strictures and cirrhosis by the time his PSC> was

discovered last fall.Later in the disease course refers to the total time from inception tocomplete liver failure. Typically early in the course of PSC there areno external symptoms, only elevated liver enzymes. As PSC progresses,strictures become evident in the bile ducts when viewed with ERCP orMRCP. Fatigue, blockages, jaundice, itching and cholangitis mayappear, followed by other complication such as portal hypertension,edema, ascities, hepatic encephalopathy, muscle weakness and wasting.Histological examination (looking at tissue under the microscope) ofliver biopsy will show the liver progressing from Stage I, minordamage with inflammatory cells surrounding bile ducts, to Stage II,evidence of fibrosis, then Stage III with bridging fibrosis orscarring, finally to Stage IV, cirrhosis. The histological stages mayor may not correspond well with the overt symptoms. All the factorsare taken into consideration when

determining where in the course ofPSC you happen to be.Tim R

Want to be your own boss? Learn how on Yahoo! Small Business.

[Guest guest]

must be stage 4, then, as he has bridging fibrosis and cirrhosis. His one GI said he's probably had this for 10 years. I pointed out that 's only 8, to which he said "that tells you how bad it is, then". That being the case, I'm just being thankful he's not in liver failure at this point. AmiTim Romlein wrote: > What

are varicies and ascites? I've heard them mentioned, and know> does not have them, but since they seem to be a possiblity for> him at some point, I figured I should find out what they are.>Varicies are swollen veins (usually in the esophagus) that are causeby portal hypertension. Portal hypertension can occur when cirrhosisrestricts the flow of blood through the liver, causing it to back upand produce ballooning in the portal venous system. If the variciesrupture the resulting blood loss can be fatal. Such a rupture is oftenreferred to as a "bleed" and may cause vomiting up large quanties ofblood. Varicies are monitored by an endoscopic examination of theesophagus (basically the first part of an ERCP) and controlled bybanding, sclerotherapy or beta blockers to reduce portal pressure.http://www.mayoclinic.com/health/esophageal-varices/AN00991http://www.gastromd.com/education/esophagealvarices.htmlhttp://www.emedicine.com/med/topic745.htmAscites is the accumulation of fluid within the abdominal cavity. Thiscauses the swollen belly appearance of patients with end stage liverdisease. http://www.emedicine.com/med/topic173.htm> Also, I'm a little confused in certain situations when they> consinder "later in the disease course". Do they mean from when> when diagnosed or when disease may have actually began? > already had many many strictures and cirrhosis by the time his PSC> was

discovered last fall.Later in the disease course refers to the total time from inception tocomplete liver failure. Typically early in the course of PSC there areno external symptoms, only elevated liver enzymes. As PSC progresses,strictures become evident in the bile ducts when viewed with ERCP orMRCP. Fatigue, blockages, jaundice, itching and cholangitis mayappear, followed by other complication such as portal hypertension,edema, ascities, hepatic encephalopathy, muscle weakness and wasting.Histological examination (looking at tissue under the microscope) ofliver biopsy will show the liver progressing from Stage I, minordamage with inflammatory cells surrounding bile ducts, to Stage II,evidence of fibrosis, then Stage III with bridging fibrosis orscarring, finally to Stage IV, cirrhosis. The histological stages mayor may not correspond well with the overt symptoms. All the factorsare taken into consideration when

determining where in the course ofPSC you happen to be.Tim R

Want to be your own boss? Learn how on Yahoo! Small Business.

[Guest guest]

Ami,

Sounds like

Noah and are similarly placed on the PSC scale anyway. We have the

bridging fibrosis and cirrhosis too and all 4 portal tracts are involved. What

amazes me is that his liver function is still able to be “normal.”

This is proof how differently it hits everyone. I feel like I hear tick-tock

going in the background all the time.

Mom of Zoe (13) My very normal (teenager normal) soccer player;

Noah (8) Indeterminate colitis, PSC, Osteopenia (1-4 lumbar

vertebrae);

Aidan (4 1/2) Moderately-severe SNHL bilaterally

Recycle

Yourself

Become an

Organ Donor

[Guest guest]

Ami,

Sounds like

Noah and are similarly placed on the PSC scale anyway. We have the

bridging fibrosis and cirrhosis too and all 4 portal tracts are involved. What

amazes me is that his liver function is still able to be “normal.”

This is proof how differently it hits everyone. I feel like I hear tick-tock

going in the background all the time.

Mom of Zoe (13) My very normal (teenager normal) soccer player;

Noah (8) Indeterminate colitis, PSC, Osteopenia (1-4 lumbar

vertebrae);

Aidan (4 1/2) Moderately-severe SNHL bilaterally

Recycle

Yourself

Become an

Organ Donor

[Guest guest]

Ami,

Sounds like

Noah and are similarly placed on the PSC scale anyway. We have the

bridging fibrosis and cirrhosis too and all 4 portal tracts are involved. What

amazes me is that his liver function is still able to be “normal.”

This is proof how differently it hits everyone. I feel like I hear tick-tock

going in the background all the time.

Mom of Zoe (13) My very normal (teenager normal) soccer player;

Noah (8) Indeterminate colitis, PSC, Osteopenia (1-4 lumbar

vertebrae);

Aidan (4 1/2) Moderately-severe SNHL bilaterally

Recycle

Yourself

Become an

Organ Donor

[Guest guest]

Hi. I just thought I'd chime in to you..we used to live outside of

Ames Iowa and we are actually moving back to that area. My husband

has PSC and when we lived there he saw Dr. Fleming in Ames and was

also sent to Mayo to see Dr. Lindor. I suspect when we move back we

will go back. Currently we live in Texas and go to Baylor to see a

specialist there. Anyway- small world!

Mindy

Mike's wife

>

> We see Dr Lindor at Mayo every year. We live in Iowa, about four

hours away from Rochester. My husband hates to go because he thinks

it is a waste of time. I say you need to keep up and make sure their

has been no progression. We are scheduled for July 10th this year.

>

>

> RE: PSC progression

>

>

>

> There is some evidence that there are a LOT more people with PSC

than currently thought - just much more slower developing. I was

diagnosed with PSC in 2000, and have been symptom-free since 2001.

>

>

>

> Arne

> 55 - UC 1977, PSC 2000

> Alive and (mostly) well in Minnesota

>

> ________________________________

>

> From: [mailto:psc-

support ] On Behalf Of rebeccasmith41

>

> ...Is it possible to live with PSC and never have any

complications? We feel like we have been living with a black cloud

over our heads...

>

> Becky

>

[Guest guest]

Hi. I just thought I'd chime in to you..we used to live outside of

Ames Iowa and we are actually moving back to that area. My husband

has PSC and when we lived there he saw Dr. Fleming in Ames and was

also sent to Mayo to see Dr. Lindor. I suspect when we move back we

will go back. Currently we live in Texas and go to Baylor to see a

specialist there. Anyway- small world!

Mindy

Mike's wife

>

> We see Dr Lindor at Mayo every year. We live in Iowa, about four

hours away from Rochester. My husband hates to go because he thinks

it is a waste of time. I say you need to keep up and make sure their

has been no progression. We are scheduled for July 10th this year.

>

>

> RE: PSC progression

>

>

>

> There is some evidence that there are a LOT more people with PSC

than currently thought - just much more slower developing. I was

diagnosed with PSC in 2000, and have been symptom-free since 2001.

>

>

>

> Arne

> 55 - UC 1977, PSC 2000

> Alive and (mostly) well in Minnesota

>

> ________________________________

>

> From: [mailto:psc-

support ] On Behalf Of rebeccasmith41

>

> ...Is it possible to live with PSC and never have any

complications? We feel like we have been living with a black cloud

over our heads...

>

> Becky

>

[Guest guest]

Hi. I just thought I'd chime in to you..we used to live outside of

Ames Iowa and we are actually moving back to that area. My husband

has PSC and when we lived there he saw Dr. Fleming in Ames and was

also sent to Mayo to see Dr. Lindor. I suspect when we move back we

will go back. Currently we live in Texas and go to Baylor to see a

specialist there. Anyway- small world!

Mindy

Mike's wife

>

> We see Dr Lindor at Mayo every year. We live in Iowa, about four

hours away from Rochester. My husband hates to go because he thinks

it is a waste of time. I say you need to keep up and make sure their

has been no progression. We are scheduled for July 10th this year.

>

>

> RE: PSC progression

>

>

>

> There is some evidence that there are a LOT more people with PSC

than currently thought - just much more slower developing. I was

diagnosed with PSC in 2000, and have been symptom-free since 2001.

>

>

>

> Arne

> 55 - UC 1977, PSC 2000

> Alive and (mostly) well in Minnesota

>

> ________________________________

>

> From: [mailto:psc-

support ] On Behalf Of rebeccasmith41

>

> ...Is it possible to live with PSC and never have any

complications? We feel like we have been living with a black cloud

over our heads...

>

> Becky

>

[Guest guest]

Hi. I just thought I'd chime in to you..we used to live outside of

Ames Iowa and we are actually moving back to that area. My husband

has PSC and when we lived there he saw Dr. Fleming in Ames and was

also sent to Mayo to see Dr. Lindor. I suspect when we move back we

will go back. Currently we live in Texas and go to Baylor to see a

specialist there. Anyway- small world!

Mindy

Mike's wife

>

> We see Dr Lindor at Mayo every year. We live in Iowa, about four

hours away from Rochester. My husband hates to go because he thinks

it is a waste of time. I say you need to keep up and make sure their

has been no progression. We are scheduled for July 10th this year.

>

>

> RE: PSC progression

>

>

>

> There is some evidence that there are a LOT more people with PSC

than currently thought - just much more slower developing. I was

diagnosed with PSC in 2000, and have been symptom-free since 2001.

>

>

>

> Arne

> 55 - UC 1977, PSC 2000

> Alive and (mostly) well in Minnesota

>

> ________________________________

>

> From: [mailto:psc-

support ] On Behalf Of rebeccasmith41

>

> ...Is it possible to live with PSC and never have any

complications? We feel like we have been living with a black cloud

over our heads...

>

> Becky

>

[Guest guest]

Hi. I just thought I'd chime in to you..we used to live outside of

Ames Iowa and we are actually moving back to that area. My husband

has PSC and when we lived there he saw Dr. Fleming in Ames and was

also sent to Mayo to see Dr. Lindor. I suspect when we move back we

will go back. Currently we live in Texas and go to Baylor to see a

specialist there. Anyway- small world!

Mindy

Mike's wife

>

> We see Dr Lindor at Mayo every year. We live in Iowa, about four

hours away from Rochester. My husband hates to go because he thinks

it is a waste of time. I say you need to keep up and make sure their

has been no progression. We are scheduled for July 10th this year.

>

>

> RE: PSC progression

>

>

>

> There is some evidence that there are a LOT more people with PSC

than currently thought - just much more slower developing. I was

diagnosed with PSC in 2000, and have been symptom-free since 2001.

>

>

>

> Arne

> 55 - UC 1977, PSC 2000

> Alive and (mostly) well in Minnesota

>

> ________________________________

>

> From: [mailto:psc-

support ] On Behalf Of rebeccasmith41

>

> ...Is it possible to live with PSC and never have any

complications? We feel like we have been living with a black cloud

over our heads...

>

> Becky

>

[Guest guest]

Hi. I just thought I'd chime in to you..we used to live outside of

Ames Iowa and we are actually moving back to that area. My husband

has PSC and when we lived there he saw Dr. Fleming in Ames and was

also sent to Mayo to see Dr. Lindor. I suspect when we move back we

will go back. Currently we live in Texas and go to Baylor to see a

specialist there. Anyway- small world!

Mindy

Mike's wife

>

> We see Dr Lindor at Mayo every year. We live in Iowa, about four

hours away from Rochester. My husband hates to go because he thinks

it is a waste of time. I say you need to keep up and make sure their

has been no progression. We are scheduled for July 10th this year.

>

>

> RE: PSC progression

>

>

>

> There is some evidence that there are a LOT more people with PSC

than currently thought - just much more slower developing. I was

diagnosed with PSC in 2000, and have been symptom-free since 2001.

>

>

>

> Arne

> 55 - UC 1977, PSC 2000

> Alive and (mostly) well in Minnesota

>

> ________________________________

>

> From: [mailto:psc-

support ] On Behalf Of rebeccasmith41

>

> ...Is it possible to live with PSC and never have any

complications? We feel like we have been living with a black cloud

over our heads...

>

> Becky

>

[Guest guest]

Hi Mindy! Where currently do you live in Texas? We live in Midland, Texas.

My son, Joe, who has PSC, lives in Austin, Texas. I have been hoping Joe

would seek second opinions, but at this time he is satisfied with his local

gastroenterologist and has not been seen by a hepatologist.

How is Mike doing/feeling?

Chris

mother of Joe (32) UC 1987, j-pouch 1999, PSC, acute pancreatitis 3/2006

[Guest guest]

Hi Mindy! Where currently do you live in Texas? We live in Midland, Texas.

My son, Joe, who has PSC, lives in Austin, Texas. I have been hoping Joe

would seek second opinions, but at this time he is satisfied with his local

gastroenterologist and has not been seen by a hepatologist.

How is Mike doing/feeling?

Chris

mother of Joe (32) UC 1987, j-pouch 1999, PSC, acute pancreatitis 3/2006

[Guest guest]

Hi Chris-

We live in Austin as well, well Leander, suburb.

Where in Austin is your son?

My brother sees Dr. Ziebert, he is a gastro and hasn't

seena hep yet either. We have been very happy with

Dr. Zieberts treatment. He has been the nicest doctor

and works with my brothers non-insurance issues. We

are constantly referring patients to see Dr. Ziebert

for their routine scopes etc. He was the first doctor

that actually wanted to find out what was wrong with

my brother and get him on a treatment plan that worked

for him!

Brother, , 30, PSC & UC

--- Warmbrodt wrote:

> Hi Mindy! Where currently do you live in Texas? We

> live in Midland, Texas.

> My son, Joe, who has PSC, lives in Austin, Texas. I

> have been hoping Joe

> would seek second opinions, but at this time he is

> satisfied with his local

> gastroenterologist and has not been seen by a

> hepatologist.

>

> How is Mike doing/feeling?

>

> Chris

> mother of Joe (32) UC 1987, j-pouch 1999, PSC, acute

> pancreatitis 3/2006

>

>

>

>

>

[Guest guest]

Hi Chris-

We live in Austin as well, well Leander, suburb.

Where in Austin is your son?

My brother sees Dr. Ziebert, he is a gastro and hasn't

seena hep yet either. We have been very happy with

Dr. Zieberts treatment. He has been the nicest doctor

and works with my brothers non-insurance issues. We

are constantly referring patients to see Dr. Ziebert

for their routine scopes etc. He was the first doctor

that actually wanted to find out what was wrong with

my brother and get him on a treatment plan that worked

for him!

Brother, , 30, PSC & UC

--- Warmbrodt wrote:

> Hi Mindy! Where currently do you live in Texas? We

> live in Midland, Texas.

> My son, Joe, who has PSC, lives in Austin, Texas. I

> have been hoping Joe

> would seek second opinions, but at this time he is

> satisfied with his local

> gastroenterologist and has not been seen by a

> hepatologist.

>

> How is Mike doing/feeling?

>

> Chris

> mother of Joe (32) UC 1987, j-pouch 1999, PSC, acute

> pancreatitis 3/2006

>

>

>

>

>

[Guest guest]

Hi ,

It's so great that your brother, has a good doc. And he works with

the insurance issues! How wonderful! I wish and your family well.

Joe and his wife live in north central Austin. He sees Dr. Becker,

gastroenterologist (South Austin office - St. 's Hospital of South

Austin).

Since Austin does not have a tx center, I guess there are not any

hepatologists in Austin. San , Dallas (Baylor), Houston (Medical

Center) probably.

Chris

mother of Joe (32) UC 1987, j-pouch 1999, PSC, acute pancreatitis 3/2006

[Guest guest]

Hi ,

It's so great that your brother, has a good doc. And he works with

the insurance issues! How wonderful! I wish and your family well.

Joe and his wife live in north central Austin. He sees Dr. Becker,

gastroenterologist (South Austin office - St. 's Hospital of South

Austin).

Since Austin does not have a tx center, I guess there are not any

hepatologists in Austin. San , Dallas (Baylor), Houston (Medical

Center) probably.

Chris

mother of Joe (32) UC 1987, j-pouch 1999, PSC, acute pancreatitis 3/2006

[Guest guest]

Hi ,

It's so great that your brother, has a good doc. And he works with

the insurance issues! How wonderful! I wish and your family well.

Joe and his wife live in north central Austin. He sees Dr. Becker,

gastroenterologist (South Austin office - St. 's Hospital of South

Austin).

Since Austin does not have a tx center, I guess there are not any

hepatologists in Austin. San , Dallas (Baylor), Houston (Medical

Center) probably.

Chris

mother of Joe (32) UC 1987, j-pouch 1999, PSC, acute pancreatitis 3/2006

[Guest guest]

Small world indeed - I lived in Ames for 5 years in the early 70s.

Arne

55 - UC 1977, PSC 2000

Alive and (mostly) well in Minnesota

________________________________

From: [mailto: ] On Behalf Of texaswagner@...

Hi. I just thought I'd chime in to you..we used to live outside of Ames Iowa and we are actually moving back to that area... Anyway- small world!

Mindy

Mike's wife

[Guest guest]

Small world indeed - I lived in Ames for 5 years in the early 70s.

Arne

55 - UC 1977, PSC 2000

Alive and (mostly) well in Minnesota

________________________________

From: [mailto: ] On Behalf Of texaswagner@...

Hi. I just thought I'd chime in to you..we used to live outside of Ames Iowa and we are actually moving back to that area... Anyway- small world!

Mindy

Mike's wife