RE: Newly diagnosed with questions

[Guest guest]

Alison, a good place to start is with the FAQs at http://www.psc-

literature.org/FAQ.htm, and the PSC Partners brochure at

http://www.pscpartners.org/brochures.htm.

Diagnosis IS a scary and confusing time, but you've come to the right

place.

The CA-19-9 tumor marker test is used to detect CCA

(cholangiocarcinoma), but it is not a very good test until the

numbers get very large, and the results can be affected by other

things.

Transplant is an option, but one of the world's foremost authorities

has stated that (I like this quote!) you're more likely to die WITH

PSC then FROM PSC.

You have very good questions - keep asking them!

Arne

57 - UC 1977 - PSC 2000

Alive and well in Minnesota

Hi everyone,

My husband was diagnosed with PSC on Wednesday. I have been reading

a lot on the Internet, but it's mostly just made me confused...

[Guest guest]

It is good that you found this group.

Everyone is open and willing to share knowledge and experience. I have

had the disease for at least 20 years. While I was diagnosed in 1990, I

had my first symptoms in 1987. Symptoms include itching, fatigue, RUQ

discomfort, higher cholesterol, higher liver enzymes, vitamin deficiencies,

etc. PSC is different for every patient in some way or another.

Once I started on Urso, my liver enzymes

went back to almost normal, my itching went away, and I went back to a fairly

normal life. My cholesterol increased over the years but was controlled

by diet, exercise and medication. I took vitamin supplements. I had a

couple of infections from 1990 until June 2007. I also have Ulcerative

Colitis. The two diseases often present together since they are both

auto-immune diseases. The UC has always been well controlled with meds

also.

The restrictions vary by doctor. Diet

can play a part in control of the disease. It may require supplements to

avoid vitamin deficiencies. I took several supplements (still do).

I would ask the GI or Hep about the most important ones. I was allowed an

occasional alcoholic beverage, but most doctors frown on that.

Is your husband seeing a gastroenterologist

or a hepatologist? I recommend seeing a hepatologist – one with PSC

knowledge. I was followed by a GI and he did a great job, but after

seeing a hepatologist prior to transplant, I think I would have benefitted from

seeing one earlier.

The MRCP is one of the most used

diagnostic tests for PSC. Another is an ERCP. Some doctors prefer

to do the MRCP since it is non-invasive. Either will give the doctor a

view of the bile ducts so that he can determine his plan of treatment.

If you read a lot on the Internet, you

know that liver transplant is something that will happen. I had mine in

2007. I was very fortunate not to have had a lot of symptoms for 17

years, but when I did my health went downhill pretty rapidly. I started

showing symptoms in late June 2007 and was transplanted in October, 2007.

The transplant went well and I am symptom free of both PSC and UC. My

only restrictions now are no alcohol and watch my sugar and salt intake.

I am sure others will respond to your

questions. Each member has unique insights and helpful suggestions.

I know the diagnosis is a shock, but with

proper care, it can really have little impact on “normal”

life. I truly believe that stress plays a part in this disease, as does

diet and exercise. A positive frame of mind also helps.

Joe

PSC & UC 1990; Liver Tx 2007

From: Joe Berry

Sent: Friday, February 13, 2009

10:17 AM

To: joe-berry@...

Subject: Fw: Newly

diagnosed with questions

From: alisonebeard

Subject: Newly diagnosed with questions

To:

Date: Friday, February 13, 2009, 9:40 AM

Hi everyone,

My husband was diagnosed with PSC on Wednesday. I have been reading a

lot on the Internet, but it's mostly just made me confused. They are

scheduling my husband for an MRCP, and they said his something-19

scores were fine--I guess that means no bile duct cancer? There are a

lot of posts here, and I don't know where to begin. Is there a

particular thread that would be good for a newbie to read? The doctor

told my husband no drinking and he also started him on Ursodiol. What

else do we need to do here at the beginning of our diagnosis? We

asked about a liver transplant and our doc didn't seem to want to

focus on that. I'd hate to think of my husband suffering or even

dying from this--is that a possibility? Thanks for any advice or

reassurance.

Alison

[Guest guest]

Hello

I cant log on to these sites, any others

thanks

skomula mn

>

> Hi everyone,

> My husband was diagnosed with PSC on Wednesday. I have been

reading

> a lot on the Internet, but it's mostly just made me confused...

>

[Guest guest]

Hello

I cant log on to these sites, any others

thanks

skomula mn

>

> Hi everyone,

> My husband was diagnosed with PSC on Wednesday. I have been

reading

> a lot on the Internet, but it's mostly just made me confused...

>

[Guest guest]

Hello

I cant log on to these sites, any others

thanks

skomula mn

>

> Hi everyone,

> My husband was diagnosed with PSC on Wednesday. I have been

reading

> a lot on the Internet, but it's mostly just made me confused...

>

[Guest guest]

Hello Alison

My husband was diagnosed over 4 yrs ago but I think he had it much

longer, and he is still in denial, he seems fine with no problems so

far. He has just been seeing a regular doctor and he isn't interested

in seeing a specialist at this time. I would take him to a doctor who

has knowledge about psc and make sure to write the questions out so

you can ask when you see him. This site has helped me with questions

I had, I hope it helps you as well.

skomula mn

>

> Hi everyone,

> My husband was diagnosed with PSC on Wednesday. I have been

reading a

> lot on the Internet, but it's mostly just made me confused. They

are

> scheduling my husband for an MRCP, and they said his something-19

> scores were fine--I guess that means no bile duct cancer? There

are a

> lot of posts here, and I don't know where to begin. Is there a

> particular thread that would be good for a newbie to read? The

doctor

> told my husband no drinking and he also started him on Ursodiol.

What

> else do we need to do here at the beginning of our diagnosis? We

> asked about a liver transplant and our doc didn't seem to want to

> focus on that. I'd hate to think of my husband suffering or even

> dying from this--is that a possibility? Thanks for any advice or

> reassurance.

> Alison

>

[Guest guest]

Hi Alison,

My husband was diagnosed two years ago. He was really sick at the time which lead us to having blood-work done. That lead us to the ultrasound, which lead to the biopsy. We found out that he has stage 2 PSC. It is hard when you first get the news. Not many people know much about this disease; including doctors. You automatically want to cure them in some way. You get disappointed to find out that there is not much you can do to prevent or repair things. They can only live with it as comfortably as possible. The only med my husband is on is Urdisol as well. Every now and again I see him get really tired and his colouring changes a bit. For the most part he is still able to function normally. I just aprreciate everyday that he seems healthy and happy. I think we are still in the denial phase, especially since we have not had to experience many of the horrible symptoms others have. This is a good group to be in touch with even if you just

browse through some of the emails.

Good Luck.

Have a good day! Elisha Buckingham elishabuckingham@...

Subject: Re: Newly diagnosed with questionsTo: Received: Friday, February 13, 2009, 11:28 AM

Hello AlisonMy husband was diagnosed over 4 yrs ago but I think he had it much longer, and he is still in denial, he seems fine with no problems so far. He has just been seeing a regular doctor and he isn't interested in seeing a specialist at this time. I would take him to a doctor who has knowledge about psc and make sure to write the questions out so you can ask when you see him. This site has helped me with questions I had, I hope it helps you as well.skomula mn>> Hi everyone,> My husband was diagnosed with PSC on Wednesday. I have been reading a > lot on the Internet, but it's mostly just made me confused. They are > scheduling my husband for an MRCP, and they said his something-19 > scores

were fine--I guess that means no bile duct cancer? There are a > lot of posts here, and I don't know where to begin. Is there a > particular thread that would be good for a newbie to read? The doctor > told my husband no drinking and he also started him on Ursodiol. What > else do we need to do here at the beginning of our diagnosis? We > asked about a liver transplant and our doc didn't seem to want to > focus on that. I'd hate to think of my husband suffering or even > dying from this--is that a possibility? Thanks for any advice or > reassurance.> Alison>

Now with a new friend-happy design! Try the new Yahoo! Canada Messenger

[Guest guest]

Hi Alison,

My husband was diagnosed two years ago. He was really sick at the time which lead us to having blood-work done. That lead us to the ultrasound, which lead to the biopsy. We found out that he has stage 2 PSC. It is hard when you first get the news. Not many people know much about this disease; including doctors. You automatically want to cure them in some way. You get disappointed to find out that there is not much you can do to prevent or repair things. They can only live with it as comfortably as possible. The only med my husband is on is Urdisol as well. Every now and again I see him get really tired and his colouring changes a bit. For the most part he is still able to function normally. I just aprreciate everyday that he seems healthy and happy. I think we are still in the denial phase, especially since we have not had to experience many of the horrible symptoms others have. This is a good group to be in touch with even if you just

browse through some of the emails.

Good Luck.

Have a good day! Elisha Buckingham elishabuckingham@...

Subject: Re: Newly diagnosed with questionsTo: Received: Friday, February 13, 2009, 11:28 AM

Hello AlisonMy husband was diagnosed over 4 yrs ago but I think he had it much longer, and he is still in denial, he seems fine with no problems so far. He has just been seeing a regular doctor and he isn't interested in seeing a specialist at this time. I would take him to a doctor who has knowledge about psc and make sure to write the questions out so you can ask when you see him. This site has helped me with questions I had, I hope it helps you as well.skomula mn>> Hi everyone,> My husband was diagnosed with PSC on Wednesday. I have been reading a > lot on the Internet, but it's mostly just made me confused. They are > scheduling my husband for an MRCP, and they said his something-19 > scores

were fine--I guess that means no bile duct cancer? There are a > lot of posts here, and I don't know where to begin. Is there a > particular thread that would be good for a newbie to read? The doctor > told my husband no drinking and he also started him on Ursodiol. What > else do we need to do here at the beginning of our diagnosis? We > asked about a liver transplant and our doc didn't seem to want to > focus on that. I'd hate to think of my husband suffering or even > dying from this--is that a possibility? Thanks for any advice or > reassurance.> Alison>

Now with a new friend-happy design! Try the new Yahoo! Canada Messenger

[Guest guest]

Hi Alison,

My husband was diagnosed two years ago. He was really sick at the time which lead us to having blood-work done. That lead us to the ultrasound, which lead to the biopsy. We found out that he has stage 2 PSC. It is hard when you first get the news. Not many people know much about this disease; including doctors. You automatically want to cure them in some way. You get disappointed to find out that there is not much you can do to prevent or repair things. They can only live with it as comfortably as possible. The only med my husband is on is Urdisol as well. Every now and again I see him get really tired and his colouring changes a bit. For the most part he is still able to function normally. I just aprreciate everyday that he seems healthy and happy. I think we are still in the denial phase, especially since we have not had to experience many of the horrible symptoms others have. This is a good group to be in touch with even if you just

browse through some of the emails.

Good Luck.

Have a good day! Elisha Buckingham elishabuckingham@...

Subject: Re: Newly diagnosed with questionsTo: Received: Friday, February 13, 2009, 11:28 AM

Hello AlisonMy husband was diagnosed over 4 yrs ago but I think he had it much longer, and he is still in denial, he seems fine with no problems so far. He has just been seeing a regular doctor and he isn't interested in seeing a specialist at this time. I would take him to a doctor who has knowledge about psc and make sure to write the questions out so you can ask when you see him. This site has helped me with questions I had, I hope it helps you as well.skomula mn>> Hi everyone,> My husband was diagnosed with PSC on Wednesday. I have been reading a > lot on the Internet, but it's mostly just made me confused. They are > scheduling my husband for an MRCP, and they said his something-19 > scores

were fine--I guess that means no bile duct cancer? There are a > lot of posts here, and I don't know where to begin. Is there a > particular thread that would be good for a newbie to read? The doctor > told my husband no drinking and he also started him on Ursodiol. What > else do we need to do here at the beginning of our diagnosis? We > asked about a liver transplant and our doc didn't seem to want to > focus on that. I'd hate to think of my husband suffering or even > dying from this--is that a possibility? Thanks for any advice or > reassurance.> Alison>

Now with a new friend-happy design! Try the new Yahoo! Canada Messenger

[Guest guest]

Try these:

www.pscpartners.org/brochures.htm

www.psc-literature.org/FAQ.htm

Arne

....I cant log on to these sites, any others...

[Guest guest]

Try these:

www.pscpartners.org/brochures.htm

www.psc-literature.org/FAQ.htm

Arne

....I cant log on to these sites, any others...

[Guest guest]

Try these:

www.pscpartners.org/brochures.htm

www.psc-literature.org/FAQ.htm

Arne

....I cant log on to these sites, any others...

[Guest guest]

I just wanted to thank eveyone who responded to my "Newly diagnosed with questions" thread. It helped immensely to get "real-life" information from people who have dealt with this disease. My husband is part of a large, caring family and I was able to print off/forward your responses and provide them with a little reassurance.

I have another question: what kind of vacation/sick days should we be saving to deal with the course of this disease? Should my husband save every hour of leave he possibly can while he's still feeling well? With PSC, do you just suddenly experience liver failure and need to take a large chunk of time off of work, or will there be occasional days prior to transplant where he will feel bad, and need to stay out of work?

Thanks again to everyone for the advice!

Sincerely,

Alison B.

Subject: Re: Newly diagnosed with questionsTo: Date: Friday, February 13, 2009, 8:11 PM

Try these:www.pscpartners. org/brochures. htmwww.psc-literature. org/FAQ.htmArne...I cant log on to these sites, any others...

[Guest guest]

I just wanted to thank eveyone who responded to my "Newly diagnosed with questions" thread. It helped immensely to get "real-life" information from people who have dealt with this disease. My husband is part of a large, caring family and I was able to print off/forward your responses and provide them with a little reassurance.

I have another question: what kind of vacation/sick days should we be saving to deal with the course of this disease? Should my husband save every hour of leave he possibly can while he's still feeling well? With PSC, do you just suddenly experience liver failure and need to take a large chunk of time off of work, or will there be occasional days prior to transplant where he will feel bad, and need to stay out of work?

Thanks again to everyone for the advice!

Sincerely,

Alison B.

Subject: Re: Newly diagnosed with questionsTo: Date: Friday, February 13, 2009, 8:11 PM

Try these:www.pscpartners. org/brochures. htmwww.psc-literature. org/FAQ.htmArne...I cant log on to these sites, any others...

[Guest guest]

I just wanted to thank eveyone who responded to my "Newly diagnosed with questions" thread. It helped immensely to get "real-life" information from people who have dealt with this disease. My husband is part of a large, caring family and I was able to print off/forward your responses and provide them with a little reassurance.

I have another question: what kind of vacation/sick days should we be saving to deal with the course of this disease? Should my husband save every hour of leave he possibly can while he's still feeling well? With PSC, do you just suddenly experience liver failure and need to take a large chunk of time off of work, or will there be occasional days prior to transplant where he will feel bad, and need to stay out of work?

Thanks again to everyone for the advice!

Sincerely,

Alison B.

Subject: Re: Newly diagnosed with questionsTo: Date: Friday, February 13, 2009, 8:11 PM

Try these:www.pscpartners. org/brochures. htmwww.psc-literature. org/FAQ.htmArne...I cant log on to these sites, any others...

[Guest guest]

It depends on his company's policies and sometimes, on the state. In

my case, it doesn't make any difference anymore, as I would be put on

long term disability for anything over a week. We no longer have " sick

days " , just " personal time off " which you use however you like.

This wasn't true (for me) 5 years ago. Then it DID make sense

to " bank " vacation. Sorry, not much help.

Arne

....I have another question: what kind of vacation/sick days should we

be saving to deal with the course of this disease?  Should my husband

save every hour of leave he possibly can while he's still feeling

well?..

[Guest guest]

It depends on his company's policies and sometimes, on the state. In

my case, it doesn't make any difference anymore, as I would be put on

long term disability for anything over a week. We no longer have " sick

days " , just " personal time off " which you use however you like.

This wasn't true (for me) 5 years ago. Then it DID make sense

to " bank " vacation. Sorry, not much help.

Arne

....I have another question: what kind of vacation/sick days should we

be saving to deal with the course of this disease?  Should my husband

save every hour of leave he possibly can while he's still feeling

well?..

[Guest guest]

Alison,

The problem with PSC is that few of us are

the same. I have had years where the only sick leave was the semi-annual visit

with my hepatologist. The last three months I had three episodes of cholangitis

that landed me in the hospital for a few days for each. I hope that the ERCP

that was performed to open my hepatic bile ducts will help prevent these

episodes. I don't think it is typical to get sudden liver failure (even though it

is possible). Some people on this forum have had PSC for more than 20 years

without serious symptoms, others had transplants within a few years of

diagnose.

Usually (most of the time, if there is

such a thing in PSC) there is a slow decrease of the liver function over the

years. People might go from a-symptomatic to itching, pain in the right upper

quadrant of the belly (RUQ pain) fatigue or jaundice. The doctors might jump in

at some point to perform an ERCP (maybe place a stent) and bring you back to

a-symptomatic for a few years. You may get fevers with chills from cholangitis

attacks which will be treated with antibiotics. The real problem is that with

some people the progress of the disease is fast and with some people it is

really slow, some people only have certain symptoms and never experience others.

I thought for a while that I was in the really slow category, but it seems that

my symptoms are increasing on me.

I had my first abnormal liver function

tests in late 2001. I was diagnosed in early 2003. I was a-symptomatic till

late 2005, at which point my gall bladder was taken out and I had a few ERCPs

with stent insertion. Early 2006 the stent was taken out and I was

a-symptomatic till late 2008, at which point I had three cholangitis episodes

and two ERCPs. I am feeling okay now, but I haven't been off the antibiotics

for long.

Once again, we all are different and

statistics don't really work on PSC, unfortunately. This uncertainty is what

makes coping with PSC tough.

Regards,

Chaim Boermeester, Israel

From: [mailto: ] On Behalf Of Alison Beard

Sent: Monday, February 16, 2009

15:15

To:

Subject: Re: Re:

Newly diagnosed with questions

I just wanted to thank eveyone who responded to my

" Newly diagnosed with questions " thread. It helped immensely

to get " real-life " information from people who have dealt with this

disease. My husband is part of a large, caring family and I was able to

print off/forward your responses and provide them with a little

reassurance.

I have another question: what kind of

vacation/sick days should we be saving to deal with the course of this

disease? Should my husband save every hour of leave he possibly can

while he's still feeling well? With PSC, do you just suddenly

experience liver failure and need to take a large chunk of time off of work,

or will there be occasional days prior to transplant where he

will feel bad, and need to stay out of work?

Thanks again to everyone for the advice!

Sincerely,

Alison B.

From: Arne

<stonehollowmn (AT) tds (DOT) net>

Subject: Re: Newly diagnosed with questions

To:

Date: Friday, February 13, 2009, 8:11 PM

Try these:

www.pscpartners. org/brochures. htm

www.psc-literature. org/FAQ.htm

Arne

....I cant log on to these sites, any others...

..

[Guest guest]

I agree that it depends on the company policy; however, I recommend

saving as much as you are allowed. I also recommend becoming

familiar with the federal FMLA and any State or local disability or

equivalent to FMLA programs that you may have available to you to

help protect your husbands job, if needed.

No one wants to plan for this kind of crap but the better prepared

you are less mess it will be IF it happens. so I also recommend

keeping a binder with copies of all of your lab test and diagnostic

work ups in dated order. This will help if your husband ever has to

apply for disability.

As far as the second part of your question, does liver failure come

on suddenly; I do not know.

I was diagnosed in 2003, but they think I have had PSC since at least

1994, when my symptoms first started, and so far (knocking on wood

here) I am not at the point of liver failure. I think it can go

wither way though depending on you and your body and how the disease

chooses to progress.

Hope this helps. By the way, if you couldn't tell, I am very anal

about being prepared and having all my " I's " and " T's " dotted and

crossed. That cmes from being a single mom and feeling the need to

have things in order for my kids.

Dawn

>

> ....I cant log on to these sites, any others...

>

[Guest guest]

I agree that it depends on the company policy; however, I recommend

saving as much as you are allowed. I also recommend becoming

familiar with the federal FMLA and any State or local disability or

equivalent to FMLA programs that you may have available to you to

help protect your husbands job, if needed.

No one wants to plan for this kind of crap but the better prepared

you are less mess it will be IF it happens. so I also recommend

keeping a binder with copies of all of your lab test and diagnostic

work ups in dated order. This will help if your husband ever has to

apply for disability.

As far as the second part of your question, does liver failure come

on suddenly; I do not know.

I was diagnosed in 2003, but they think I have had PSC since at least

1994, when my symptoms first started, and so far (knocking on wood

here) I am not at the point of liver failure. I think it can go

wither way though depending on you and your body and how the disease

chooses to progress.

Hope this helps. By the way, if you couldn't tell, I am very anal

about being prepared and having all my " I's " and " T's " dotted and

crossed. That cmes from being a single mom and feeling the need to

have things in order for my kids.

Dawn

>

> ....I cant log on to these sites, any others...

>

[Guest guest]

I can tell you that no matter how much you plan and bank vacation days, it never

seems to be enough....and one thing I would like to say is, if you are 'saving'

all your vacation...are you taking time to live your life or letting PSC run

your life? I agree you need some wiggle room, but to save everything for sick

can get pretty old - fast. Learn the FMLA laws and let your HR know you know

the laws.

[Guest guest]

I can tell you that no matter how much you plan and bank vacation days, it never

seems to be enough....and one thing I would like to say is, if you are 'saving'

all your vacation...are you taking time to live your life or letting PSC run

your life? I agree you need some wiggle room, but to save everything for sick

can get pretty old - fast. Learn the FMLA laws and let your HR know you know

the laws.

[Guest guest]

If it were me I’d save as much as

possible without sacrificing vacations with family and relaxation – those

are needed too. In my case, I missed two weeks in 1987 and 1 week in 1990

– both acute episodes where I was jaundiced and I was being

diagnosed. After that, until 2007 I never missed any work for PSC until

my health rapidly declined and I needed a transplant. My case is not the

typical. As others in the group have mentioned their lot was not as easy

as mine.

Joe

PSC & UC 1990; Liver Tx 2007

I have another question: what kind of

vacation/sick days should we be saving to deal with the course of this

disease? Should my husband save every hour of leave he possibly can

while he's still feeling well? With PSC, do you just suddenly

experience liver failure and need to take a large chunk of time off of work,

or will there be occasional days prior to transplant where he

will feel bad, and need to stay out of work?

[Guest guest]

If it were me I’d save as much as

possible without sacrificing vacations with family and relaxation – those

are needed too. In my case, I missed two weeks in 1987 and 1 week in 1990

– both acute episodes where I was jaundiced and I was being

diagnosed. After that, until 2007 I never missed any work for PSC until

my health rapidly declined and I needed a transplant. My case is not the

typical. As others in the group have mentioned their lot was not as easy

as mine.

Joe

PSC & UC 1990; Liver Tx 2007

I have another question: what kind of

vacation/sick days should we be saving to deal with the course of this

disease? Should my husband save every hour of leave he possibly can

while he's still feeling well? With PSC, do you just suddenly

experience liver failure and need to take a large chunk of time off of work,

or will there be occasional days prior to transplant where he

will feel bad, and need to stay out of work?

[Guest guest]

I did forget to add that the family vacation is a big part of staying

healthy. I take 1 week every year no matter what to de-stress and

take care of me. In fact I just got back from this years trip on

Friday.

Dawn

>

> If it were me I'd save as much as possible without sacrificing

vacations

> with family and relaxation - those are needed too. In my case, I

missed two

> weeks in 1987 and 1 week in 1990 - both acute episodes where I was

jaundiced

> and I was being diagnosed. After that, until 2007 I never missed

any work

> for PSC until my health rapidly declined and I needed a

transplant. My case

> is not the typical. As others in the group have mentioned their

lot was not

> as easy as mine.

>

>

>

>

>

> Joe

>

> PSC & UC 1990; Liver Tx 2007

>

>

>

>

>

>

>

>

> I have another question: what kind of vacation/sick days should we

be saving

> to deal with the course of this disease? Should my husband save

every hour

> of leave he possibly can while he's still feeling well? With PSC,

do you

> just suddenly experience liver failure and need to take a large

chunk of

> time off of work, or will there be occasional days prior to

transplant where

> he will feel bad, and need to stay out of work?

>

>

> http://geo.yahoo.com/serv?

s=97359714/grpId=1243731/grpspId=1705094696/msgId

> =108075/stime=1234796143/nc1=3848644/nc2=5349275/nc3=5579901>

>