working while having psc

[Guest guest]

Hi I am a new member, I was wondering if people are able to work while having psc. I find that I get tired in the afternoon and need to take a nap, so I get most of my household chores done in the morning, also I take questran for my puritus, but I still itch at night. Any suggestions?

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[Guest guest]

Hi,

welcome to the PSC Group. Referring to your e-mail, I feel the same way. I am not able to work, as I have the same problem to be soo tired and exhausted, that I have to lay down in the afternoon and sleep. Specially when I ate and took the medication, my eyes starts automatically to shut down and in no time I am in Neverland for about 1 hour. After the nap it takes me quite a while to get awake, but than I am fine until I go to bed again. Now which employer would take me and give me a chance to rest in the afternoon, I don't think they would like that. I tried to find a part time job for the morning hours, but that seems as well difficult, as I have to tell the employer that I have PSC and have to get my external stent changed every 8 weeks at the Clinic. So that means I have to take a day off. My friends told me as well, not to tell the employer about my illness and wait and see how it is going, but unfortunately I can not do that, because this would be unfair and with PSC you never know what the next day brings. So I'll be rather honest and with that I am unemployed. I had to go through the itching as well, when my Billi was too high, but at the moment it is stable and the itch is coming and going but not as bad as it was before. My Hepatologist didn't give me any medication for the itch, so I had to deal with the problem, which was often nerv wrecking. PSC is unfortunately one of these diseases which are completly unpredicatable and my doc told me the last time, that I have to deal with the fact that I have a chronic liver disease. He is always so straight forward and not very understanding how I feel inside. But oh well, I am not prepared to push daisies and I take the day as it comes and keep my humor going, otherwise I would be a total grump.

I wish you a great week and again, welcome to the Group.

Jutta (diagnosed with PSC in 2004)_,___

Mortgage refinance is hot 1) Rates near 30-yr lows 2) Good credit get intro-rate 4.625%*

[Guest guest]

I'm still working despite being nearly 10 years into my psc adventure. It IS tough, particularly at this time of year...I'm a tax accountant, so the hours from January-April are brutal. I do make it a point to limit the number of returns I'm doing...and because of the fatigue and other symptoms, I try not to work much past 5 every day. I'm also working one full day every weekend, but I'm forcing myself to at least take Sundays off.I've been blessed in that I'm self employed, so I set my own timetable and schedule. For employers, I'm sure one could build a strong argument that PSC falls under the Americans with Disabilities Act. Plus, since we all know that fatigue and other things can hit at any moment, maybe those of us with psc would be more efficient and productive during the good times, knowing that some sick time may be right around the corner! C , EA Consulting Group, Inc.2005

Loudoun County Service Business of the Year19440 Golf Vista Plaza Ste 240Leesburg, VA 20176 cell faxThis written advice is not intended or written to be used, and it cannot be used by a taxpayer, for the purpose of avoiding penalties that may be imposed on the taxpayer.

[Guest guest]

Hi Pranita

My PSC diagnosis was only in 2005, so it's still fairly recent;

however, from what I've read here and elsewhere, that hardly seems to

matter on account of the unpredictability of the disease. While there

were numerous days in the past few months where I woke up in the

morning feeling exhausted, that has improved somewhat more recently

making me less prone to feeling I need a mid-day nap. I've also

started taking calcium supplements to address early stages of

osteoporosis. Interestingly, when I noticed my dreams becoming much

more vivid once I started the calcium, I read that calcium may help

with inducing more deep sleep including the stages where we dream (or

so-called REM sleep). [Hey, even if it's a placebo effect, I'll take

it if it works.]

I work in healthcare and fortunately, the employer is sufficiently

enlightened that we have somewhere to rest on our breaks--we work 12

hour shifts. So on days where I need the mid-day nap, I take use of

that availability.

There is research out there as well that has looked at napping during

work hours and how it leads to better productivity post-nap. This was

looking at otherwise healthy employees so if a " nap area " is

available, everyone would benefit. Unfortunately, it also requires

that the employer is on board with that since it's not mandated that

they offer the option to their staff. There's also the issue of trying

to " sell the employer " the notion that this isn't sleeping on the job.

[Guest guest]

It's pretty variable. I have only missed a few days of work due to gut issues since diagnosis seven years ago. Once my gall bladder was removed, I haven't had problems. Fatigue - yes, but I also have M.S. and arthritis. And menopause can't come soon enough. I am lucky in that I work for an employer that respects the ADA - after only a few threats. The first rule with this disease is that there are no rules.......Pranita wrote: .....I was wondering if people are able to work while having psc....

[Guest guest]

I'm still working - 12 hours/day for the next month At least it's the day shift. But only 2-1/2 years to go!

Seriously, I have not been slowed down by PSC, except for a couple of hospitalizations in 2000 and 2001. I've been asymptomatic since cholecystectomy (gallbladder removal) in the summer of 2001. I still run 10 miles a week (slowly, I'm not so young anymore), bale hay (less each year - fewer horses), bike to work (weather permitting) and canoe every summer (7 days, 80-100 miles). I may not be average, of course (I get that a lot, but usually not in this respect!).

As is often said, the only thing common in PSC is that everyone's different.

I take sulfasalazine, calcium, high-dose ursodiol, milk thistle, SAMe and high-potency vitamins (oh yeah, and Singulair for asthma). I do manage to attain a relatively low fat, low protein diet, but I'm still trying to lose 10-15 pounds.

Arne

55 - UC 1977, PSC 2000

Alive and (mostly) well in Minnesota

________________________________

Pranita wrote: .....I was wondering if people are able to work while having psc....

[Guest guest]

Husband Fred worked from 1995-2003 while having undiagnosed PSC-related

fatigue, and it was a major challenge for our whole family. Even though he

was taking Adderal (stimulant) for his ADD, he was still very tired and

irritable. His liver enzymes had been out of whack since 1995 - the year he

coincidentally suffered from a mental meltdown. I have to believe the

liver/mental stuff was/is related. In Sept. 2001 he put in for a medical

disability due to the fatigue - and this was 2 1/2 years before his PSC

diagnosis. (He blamed the fatigue on his ADD, which may have contributed at

least to the mental tiredness.)

But after 9/11 he somehow got inspired and (barely) hung in there until his

official retirement from the IRS in 2003. Thank God he was able to retire at

55 - he would not be able to work a full time job at all now. He's doing

well in retirement - but that's cause he does retirement better than anyone

I know! And there's no stress in his life cause he lives with me!

PSC seems to affect everyone so differently, from no symptoms to immediately

life-threatening upon diagnosis. I know Fred feels very blessed and

fortunate - we're both enjoying life to the fullest. He is enjoying doing

" nothing. " (I exaggerate - he spends much of his time on an atheist forum

pretending to be an atheist so he can " sneak " in " God " arguments without

getting kicked off the board.) And I'm enjoying him doing " nothing " because

he's so happy.

I pray that each of you will find happiness somehow, some way--from within,

and/or in unexpected places, moments, situations, relationships.

Wife of Atheist-Faker Fred, PSC 03/04, UC 03/06

[Guest guest]

Pranita,

I worked until the day before each of my transplants. I did miss

time because of complications that caused me to be in the hospital. My

employer has been extremely supportive. Before my first transplant I

would get up, go to work at 8:00am, go home at 5:00pm and then go to

sleep for a while. I lived 2 miles from work so I didn't have much of

a comute and I have a desk job. I was really useless around the

house. Thanks to my wonderful wife the household stayed together.

PSC 89, TX1 1997, TX2 2004

>

> I was wondering if people are able to work while having psc.

[Guest guest]

Pranita, I'm sorry that you have found yourself here but know that you have found a great group of people. I was dx with PSC in 2000 and got my tx in Sept. 2005. I worked the whole time except for the very last week when I had a MELD score of 36 out of 40. I would also get very tired in the afternoons. I started seeing an acupuncturist for this. This helped me get through the day at work but then I would need to lay down for an hour nap when I got home. It's interesting to note that I was tired when I came home from work (I have a desk job) but when I was on vacation I wouldn't get tired at all. Even if we were out and about all day. In fact I was the only one in my family who didn't have jet lag when we flew to Europe. I'm not sure why that was. Maybe it had something to do with the fact that I was being distracted. Pat (CA) Pranita Bakker

wrote: Hi I am a new member, I was wondering if people are able to work while having psc. I find that I get tired in the afternoon and need to take a nap, so I get most of my household chores done in the morning, also I take questran for my puritus, but I still itch at night. Any suggestions? Ask a question on any topic and get answers from real people. Go to

Yahoo! Answers.

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[Guest guest]

I am still working. I have had pruitis non-stop for

2.5 years....not a day goes by, or even a night, that

I don't itch. The thing that saves my patootie is

Ambien CR and Naltrexone. I take the Naltrexone 1

hour before bed and it starts to numb my nerves, and

then the Ambien CR kicks in and I generally am asleep

for about 2-3 hours before I wake, but then the CR

part of Ambien kicks me again and puts me back to

sleep.

Unfortunately, I can't take those during the day, and

I often have to rest when I get home.

Cindy Baudoux-Northrup

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[Guest guest]

I worked at a desk job up until my first transplant in 1998.

Increasing fatigue had forced me to go to a part time (3 days per

week) schedule about a month prior to my transplant. I returrned to

work 3 months after my transplant and have been working up until the

end of February. I accepted my companies buyout offer in part because

of my health. Fatigue is again creeping up on me and I need more rest

throughout the day. I also did it because it made financial sense to

accept the retirement offer at this time.

Tim R, ltx 4/4/98, relisted 2005