PSC Progressing to Liver Failure? Questions

[Guest guest]

Hello everyone. My husband Tom has been basically asymptomatic for

the first 10 years since diagnosis of PSC (1994), the last four have

shown mild strictures, type II diabetes.

Development since New Years which has resulted in ERCP under general

anesthesia 2/12/08 at University of Washington Medical Center with

Hepatology team:

mild itching started new year's eve. Steadily gotten worse. Night

sweats, fatigue. Was started on prescription powder to control

itching 2x day. Urine now orange. No URQ pain, no jaundice, no

ascites.

Labs taken weekly and keep rising. Presently are:

SGOT: 220 (5-40 IU/L)

Alk Phos: 624 (38-126 IU/L)

SGPT: 658 (5-60 IU/L)

Bilirubin total: 1.9 (0.2 - 1.4 mg/dL)

Bili conjugated (dir): 1.0 (0.0-0.5 mg/dL)

Albumin: 4.2 (3.2-5.0 g/dL)

GGT: 2559

MRI of liver with contrast last friday showed over half of liver

filled with strictures/blockages.

Question: is this the start of liver failure or just dealing with

strictures (eg stents, balloon dilations, etc.) They indicate the

need for general anesthesia " in case they need to do more while in

there. " He has not been " staged " yet - any insight or similarilites

would be greatly appreciated.

Mattich

Puyallup, WA

Husband Tom, age 43, dx 1994.

[Guest guest]

Hi --

Your Tom is a lot like another Tom...me.

My labs are quite similar, and the test results are similar as well.

I've been dealing with PSC since first being diagnosed in 1999. Even

though I have the itching, fatigue, periodic night sweats, and other

fun stuff, I'm still chugging along. Anatomically, they tell me the

liver is trashed...cirrhosis throughout, dominant strictures, lobes

separating, etc. But, I'm still working almost a full week, and

outside of chronic crohns flareups in my throat, I'm doing ok.

In fact, there have been times when I've felt best when the blood

tests were at their worst, and vice versa. The fact that he has gone

10 years seems to me to indicate that the progression is slow...just

like me.

I guess the point is this: I try not to worry about what stage of the

disease I happen to occupy. As long as I'm feeling somewhat OK, I'm

happy. If I start dwelling on anything else, it would quickly drive

me crazy.

Tom

PSC 1999

Crohns 2005

>

> Hello everyone. My husband Tom has been basically asymptomatic for

> the first 10 years since diagnosis of PSC (1994), the last four have

> shown mild strictures, type II diabetes.

>

> Development since New Years which has resulted in ERCP under general

> anesthesia 2/12/08 at University of Washington Medical Center with

> Hepatology team:

>

> mild itching started new year's eve. Steadily gotten worse. Night

> sweats, fatigue. Was started on prescription powder to control

> itching 2x day. Urine now orange. No URQ pain, no jaundice, no

> ascites.

>

> Labs taken weekly and keep rising. Presently are:

> SGOT: 220 (5-40 IU/L)

> Alk Phos: 624 (38-126 IU/L)

> SGPT: 658 (5-60 IU/L)

> Bilirubin total: 1.9 (0.2 - 1.4 mg/dL)

> Bili conjugated (dir): 1.0 (0.0-0.5 mg/dL)

> Albumin: 4.2 (3.2-5.0 g/dL)

> GGT: 2559

>

> MRI of liver with contrast last friday showed over half of liver

> filled with strictures/blockages.

>

> Question: is this the start of liver failure or just dealing with

> strictures (eg stents, balloon dilations, etc.) They indicate the

> need for general anesthesia " in case they need to do more while in

> there. " He has not been " staged " yet - any insight or similarilites

> would be greatly appreciated.

>

> Mattich

> Puyallup, WA

> Husband Tom, age 43, dx 1994.

>

[Guest guest]

-----Original

Message-----

Labs taken weekly and

keep rising.

If those of us with

experience can help, I’m hoping one of the ways is this……. Please,

please stop getting his labs done weekly. Unless the doctor has a very specific

reason, it’s being done far, far too often. With an Albumin of 4.2 labs don’t need

to be done more often than every 3 months at most (honestly I’d do them

every 6 months unless your doctor has a very specific reason.) I’m no doctor so please forgive me

for budding in, but we have been there, done that and your husband’s blood

veins will be ruined and scarred to the point of finding them will be

impossible. Not being able to find

a blood vein is quite painful and he is going to need easy access to them. HTH

Barb in Texas - Together in the Fight, Whatever it

Takes!

Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

[Guest guest]

Thank you - your email was very calming. Thank you. We find it easy

to become anxious due to two other very close family member deaths in

the last 2 years so " reality " seems so daunting at times.

I appreciate the deep-breathe reminder!

> >

> > Hello everyone. My husband Tom has been basically asymptomatic

for

> > the first 10 years since diagnosis of PSC (1994), the last four

have

> > shown mild strictures, type II diabetes.

> >

> > Development since New Years which has resulted in ERCP under

general

> > anesthesia 2/12/08 at University of Washington Medical Center

with

> > Hepatology team:

> >

> > mild itching started new year's eve. Steadily gotten worse. Night

> > sweats, fatigue. Was started on prescription powder to control

> > itching 2x day. Urine now orange. No URQ pain, no jaundice, no

> > ascites.

> >

> > Labs taken weekly and keep rising. Presently are:

> > SGOT: 220 (5-40 IU/L)

> > Alk Phos: 624 (38-126 IU/L)

> > SGPT: 658 (5-60 IU/L)

> > Bilirubin total: 1.9 (0.2 - 1.4 mg/dL)

> > Bili conjugated (dir): 1.0 (0.0-0.5 mg/dL)

> > Albumin: 4.2 (3.2-5.0 g/dL)

> > GGT: 2559

> >

> > MRI of liver with contrast last friday showed over half of liver

> > filled with strictures/blockages.

> >

> > Question: is this the start of liver failure or just dealing with

> > strictures (eg stents, balloon dilations, etc.) They indicate the

> > need for general anesthesia " in case they need to do more while

in

> > there. " He has not been " staged " yet - any insight or

similarilites

> > would be greatly appreciated.

> >

> > Mattich

> > Puyallup, WA

> > Husband Tom, age 43, dx 1994.

> >

>

[Guest guest]

I agree Barb. I should have clarified, labs have been done weekly

but just for the last 3 since his symptoms kept increasing and

expanding and they wanted to know why. Thus the scheduling of the

ERCP.

Definitely not butting in - very helpful!

>

> -----Original Message-----

> Labs taken weekly and keep rising.

>

> If those of us with experience can help, I'm hoping one of the ways

is

> this... Please, please stop getting his labs done weekly. Unless

the

> doctor has a very specific reason, it's being done far, far too

often.

> With an Albumin of 4.2 labs don't need to be done more often than

every

> 3 months at most (honestly I'd do them every 6 months unless your

doctor

> has a very specific reason.) I'm no doctor so please forgive me for

> budding in, but we have been there, done that and your husband's

blood

> veins will be ruined and scarred to the point of finding them will

be

> impossible. Not being able to find a blood vein is quite painful

and he

> is going to need easy access to them. HTH

>

> Barb in Texas - Together in the Fight, Whatever it Takes!

> Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

>

[Guest guest]

>

> -----Original Message-----

> Labs taken weekly and keep rising.

>

> Reference:If those of us with experience can help, I'm hoping one

of the ways is

> this... Please, please stop getting his labs done weekly.

It's important to know that all labs have internal norms that they go

by and that these do not translate to other labs sometimes. So an

Albumin of 4.2 might not look bad one place and may be different in

another lab. Also the albumin is extremely important in assessing the

whole picture of a PSC pt. The numbers in the lab test for albumin

also might not reflect an acute situation with the liver as albumin

hangs around for awhile in the blood, thereby reflecting a false

picture. You mentioned that his other numbers are rising so it makes

perfect sense to me that the doc is doing them weekly. In any case, I

had a TX 16 months ago, and I still have labs drawn weekly a lot of

the time. AND, my veins, while probably scarred a little, are just

fine. Doctors have loads of resons for doing what they do and if we

constantly second guess them, we do so at our own peril.

Ali

[Guest guest]

Just to add a little more to the conversation, I looked at my own labs

from the past years, and I found labs that were pretty close to the labs

you posted as far back as 1994. I wasn't anywhere near liver failure at

that point (I know that now, but it was harder to be sure at the time!)

so those values don't necessarily mean that his liver is failing. What

actually showed me that my liver was starting to really fail was a very

gradual trend of lower albumin and higher INR. Here are my INR readings

from 2002 to 2007:

0.9, 1, 1, 1, 1.1, 1.2, 1.2, 1.1, 1.2, 1, 1.3, 1.2, 1.1, 1.1, 1.2, 1.1,

1.2, 1.2, 1.3, 1.6, 3.9, 3.1

The 3.1 reading is from the day I had my transplant.

Of course this disease is very unpredictable, so your husband may follow

a very different course than I did, but I think it's safe to say that

that blood work doesn't necessarily mean his liver is failing, and that

a long term trend is more likely to be predictive than a sudden change.

athan