RE: Newly diagnosed with questions

February 16, 2009

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>

>

February 16, 2009

Alison,

Welcome to the group. It is hard to plan for what is going to happen because we are all so different. I was diagnosed almost 20 years ago when I became every sick. I went on long term disability (~4 months) had a operation (they removed the gall bladder and bile ducts outside the liver), but since June of 1990 I haven't been to a hospital (except for 3 DVTs) or missed more than 2 days in a row from work. Although I have missed very little time others in this group seem to need regular hospital visits. It seems to be very individual how this disease effects people.

Ian (52) PSC 89

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...

-- Ian Cribb P.Eng. (6...

February 16, 2009

I work in a hospital and we have what is called EIP (extended illness pay), which is used if we are out sick-need doctor note or hospital discharge with date able to return on it. I actually used up all of my EIP and my PTO (paid time off) last year because I missed a month of time between August and October due to cholangitis attacks.

After I came back from my time out in October my manager had me fill out the FMLA information specifically to cover any extended time off I may need in the future related specifically to my PSC.

But for me now I need to keep just banking my PTO because I am in nursing school, and towards the end og my program in late 2010 I will need to use a lot of it.

Beth Brandel

PS just wanted to check with the other person here that is in nursing school....hope you are doing okay and managing the stress okay. I am currently taking Pharmacology, Health Assessment and an online Pathophyisology (ugh) class. So I am there with you, I just look at it that it will all be worth it in the end. Good Luck in class, also there is no such thing as just an associates degree nurse---you are a NURSE, some of the best nurses on my floor do not have a Bachelors, but I would prefer to have them as my nurse if I was a pt. It is all about how you relate to people, not about the letters behind your name

February 16, 2009

I work in a hospital and we have what is called EIP (extended illness pay), which is used if we are out sick-need doctor note or hospital discharge with date able to return on it. I actually used up all of my EIP and my PTO (paid time off) last year because I missed a month of time between August and October due to cholangitis attacks.

After I came back from my time out in October my manager had me fill out the FMLA information specifically to cover any extended time off I may need in the future related specifically to my PSC.

But for me now I need to keep just banking my PTO because I am in nursing school, and towards the end og my program in late 2010 I will need to use a lot of it.

Beth Brandel

PS just wanted to check with the other person here that is in nursing school....hope you are doing okay and managing the stress okay. I am currently taking Pharmacology, Health Assessment and an online Pathophyisology (ugh) class. So I am there with you, I just look at it that it will all be worth it in the end. Good Luck in class, also there is no such thing as just an associates degree nurse---you are a NURSE, some of the best nurses on my floor do not have a Bachelors, but I would prefer to have them as my nurse if I was a pt. It is all about how you relate to people, not about the letters behind your name

February 23, 2009

Hi! I saw this statement in an earlier post:

> If you read a lot on the Internet, you know that liver transplant is something

that will happen. >

I'm not 100% sure that's accurate. Somebody correct me if I'm wrong, but not

all PSC patients end up needing liver transplants, right? I think I was told

that, while most PSC patients will require a liver transplant at some point, it

is not necessarily a given in all cases. Anybody else heard the same thing?

Sandi in VA

February 23, 2009

Hi! I saw this statement in an earlier post:

> If you read a lot on the Internet, you know that liver transplant is something

that will happen. >

I'm not 100% sure that's accurate. Somebody correct me if I'm wrong, but not

all PSC patients end up needing liver transplants, right? I think I was told

that, while most PSC patients will require a liver transplant at some point, it

is not necessarily a given in all cases. Anybody else heard the same thing?

Sandi in VA

February 23, 2009

Hi! I saw this statement in an earlier post:

> If you read a lot on the Internet, you know that liver transplant is something

that will happen. >

I'm not 100% sure that's accurate. Somebody correct me if I'm wrong, but not

all PSC patients end up needing liver transplants, right? I think I was told

that, while most PSC patients will require a liver transplant at some point, it

is not necessarily a given in all cases. Anybody else heard the same thing?

Sandi in VA

February 23, 2009

Thanks for asking that, Sandi. We are a little confused about what happens next--I guess we just manage the symptoms until it's time for a transplant? Or are there some folks who manage their symptoms so well that they never need a transplant? Thanks to anyone who can provide clarification.

Alison B.

Subject: RE: Newly diagnosed with questionsTo: Date: Monday, February 23, 2009, 6:49 PM

Hi! I saw this statement in an earlier post:> If you read a lot on the Internet, you know that liver transplant is something that will happen. >I'm not 100% sure that's accurate. Somebody correct me if I'm wrong, but not all PSC patients end up needing liver transplants, right? I think I was told that, while most PSC patients will require a liver transplant at some point, it is not necessarily a given in all cases. Anybody else heard the same thing?Sandi in VA

February 23, 2009

Thanks for asking that, Sandi. We are a little confused about what happens next--I guess we just manage the symptoms until it's time for a transplant? Or are there some folks who manage their symptoms so well that they never need a transplant? Thanks to anyone who can provide clarification.

Alison B.

Subject: RE: Newly diagnosed with questionsTo: Date: Monday, February 23, 2009, 6:49 PM

Hi! I saw this statement in an earlier post:> If you read a lot on the Internet, you know that liver transplant is something that will happen. >I'm not 100% sure that's accurate. Somebody correct me if I'm wrong, but not all PSC patients end up needing liver transplants, right? I think I was told that, while most PSC patients will require a liver transplant at some point, it is not necessarily a given in all cases. Anybody else heard the same thing?Sandi in VA

February 23, 2009

Alison,

Hi! You're welcome! I hope somebody else chimes in soon to back me up, but I

feel pretty positive I was told that not all PSCers need a transplant.

In answer to your what happens next, it sounds a little odd, but maintenance and

vigilance are sort of the places to begin. If you don't already have yourself a

hepatologist (or GI if a hep isn't available) who is familiar with PSC, find

one. Once you find that doc, if you don't understand something ask questions.

Seriously, you'd be surprised how many people don't ask their doctors questions.

Make sure you do! Start a notebook and keep records of all lab results, notes

from ERs/doctors visits, etc. You may want to keep track of any symptoms that

start occurring (if and when they do) so you'll be prepared to discuss them with

your doctor. Be reasonable. It's easy to think that every headache,

stomachache, etc. is PSC related. It's not that they couldn't be, but don't

always jump to PSC mode. Sometimes a cold is a cold. If ever in doubt though,

call your doc or go to the ER. Better to be laughed at than to miss something

important. Try to use

one pharmacy so in case you end up on a lot of medications there is somebody

watching your back for interactions. Carry a wallet card with the name of the

disease, any meds and med allergies, etc. in your/his wallet in case you need

it. (You can find a link to one on the PSC Partners Facebook Group

--www.facebook.com, sign up for a free account and then search PSC Partners and

choose the group and join. You can also contact me and I can get you there if

you need help.)

Most PSC patients (I believe) have at least yearly MRCPs or ERCPs,

Colonoscopies, maybe upper endoscopies, checkups on labs every few months, etc.

Most PSC patients also either have or develop IBD problems, so you may want to

be on the lookout for that. Try to keep stress low (ha, ha), watch nutrition

and try to maintain a low fat diet (be aware of the need for potassium, Vitamin

A, D maybe iron and calcium). Some doctors advise going dairy free, but that

seems to be a personal call. My best advice is to find the humor. If you can

laugh at something it's a whole lot less scary! In the meantime, if I were you,

I'd try to live my life as normally as possible and not give over too much power

to the dreaded PSC until (or unless) it starts to give you no choice!

Hope you're feeling steadier and steadier!

Sandi in VA

February 23, 2009