At what point have people gone off work with PSC?

Hi all. A little about myself. I am a construction welder for work. I have colitis since age 8, and psc for a few years now. I

had bile obstructions in January and in June. I had a apt today with a liver surgeon and im a 14 on the scale for transplant.

The drs say things aren’t crucial because I’m responding to the stents and ballon dialation. I was feeling fine today and then went to work feeling nauseous and confused. This confusion thing is really scaring me as it’s coming and going.

Having said the above, and being that I work with cranes and move steel beams exceeding 60, am I wrong to go on disability. I was off for 8 weeks with the bile duct blockage.

Should I have stayed off longer?

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Bucco,
Sorry to hear that you are having problems recently. Regarding the confusion, what types of meds are you currently on? Perhaps one of those is contributing to the confusion. Unless you are having ammonia buildup I wouldn’t think that would be an issue. After each of my ERCP’s, I would usually rest the next couple days after the procedure, but not for 8 weeks. You must have really had a pretty good set back. Regarding nausea, one medication that really helped me was Zofran. I took one every day. You might ask your liver doctor about the possibility of taking that. I did find that certain smells of foods, etc. really made me sick feeling, so you have to figure out what works best for you. Be sure an stay up on top of your labs as the doctor orders. Although a 14 MELD right now, that number can climb rapidly when you least expect it, so always know where you are on the MELD scale. There is an online calculator if you need the link. It doesn’t sound like at this point you would qualify for disability. I’d work as long as you can safely. You are in a very important job that requires your complete alertness.
Please let us know any way we can help.

Mark
PSC 2011 / Liver Transplant 2015

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Howdy,
I had to retire early (age 62) from a very lucrative job in Abu Dhabi UAE in 2018. My PSC symptoms got to where my energy was so low that could hardly make it through a day. So I left my job and applied for for disability which was declined even though I had doctors statements. But it is what it is but as far as my health is concerned, my condition is stable with normal blood LFTs but the fatigue is currently my worse symptom. I hope you’re able to stabilize your symptoms so you can keep working. Good luck

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Hi Buco,

I also had a stent in place, unfortunately I didn’t respond well and had an infection there. I was absolutely fine then took a weird turn; migraine, confusion, pain and sickness. I would definitely go back to the doctor who inserted the stent to check everything is ok first and foremost. You may need to be careful of infection especially with PSC.

I ended up having my stent removed just 2 weeks after having placed. So maybe check that before you completely sign yourself off for work.

Also taking time off work to recover is never a bad thing, just keep resting and keep doing the things that make you happy. You may want to consider driving Uber or something if you want to have more casual work until you recover then it’s on your own time.

The confusion sounds scary, I hope you’re able to get some medication or maybe the stent has caused a stone or infection. Be very careful with those things! You could even be allergic to the material…

Take care of yourself,

Sarah

It has been my experience that most people get denied for disability 2-3 times before they are approved. So don’t give up to soon. I was diagnosed with PSC 20 years ago. I had confusion often about 3 years ago and they put me on a medication that cleared it up in about 2 days for as long as I continued to take it. It was extremely expensive and I had to get the medication from the manufacturer because insurance does not pay for it. Two years ago I went on Medicare then the manufacture would not pay for it and neither would Medicare. I just had to learn to live with it. It appears the PSC causes bacteria to build up in the intestine then migrate to the brain. I get intestinal obstructions 6-9 times a year because most of my large intestine was removed due to dysplasia. I usually drink about 3 oz of coke (maybe it’s a wives tale) but I was told that it is very similar to digestive juices and 70% of the time it does appear to clear the blockage. The hospital does not like me staying home but I just could not afford it and I hate hospitals. Medicare now pays for it but I still hate hospitals and wearing a mask all the time so I still try to get through it at home first. It sounds very dangerous for you to continue to due the type of work you do with the confusion. I hope you find an answer.

Make an appointment with your liver doctor to discuss going on permanent disability. I believe that your PSC diagnosis plus the recent bile duct blockages as well as your residual symptoms may be enough to qualify you for disability. Be careful taking nausea drugs before work, as these can be sedating. Each person’s experience is different—go with what your head and body is telling you.
Mary Monastesse, Family Nurse Practitioner

Regarding anti-nausea medications, Zofran is a non-sedating anti-nausea medicine. Whereas, something like Phenergan does contain some alcohol that can make you sleepy. These are just two examples. Check with your doctor of course before taking anything new.

Mark

With my PSC, I worked until my Doctor said I needed to stop. My MELD score when I stopped was around 29, and after I went on disability it was only a couple more months before my score skyrocketed to 42 and I had my transplant.

Do what you can do with your work, but remember it is your life and with work, they will replace you like a set of windshield wipers!

Best wishes, Stephen

Coming up on two years since my transplant and back to my old self (before the PSC)

Everyone is different. But with construction, i think the stakes are higher due to safety issues-yours and others. Make sure your doc has your job description so that they have a much better idea of what you do on your job; do not assume they do.

Regarding what your doc says, the only liver level that got his attention was bilirubin.

With your confusion coming and going, there is a symptom of PSC called HE, hepatic encephalitis caused by too much ammonia getting to the brain, that can cause confusion-related issues.
See if you can get your ammonia level checked. A low sodium level can have the same effect, so have that checked as well.

You did not mention fatigue. That is a verrrrry common symptom and there is no medication for that.
Being in construction, you would be in the best position to know how your body will adapt.

There are a lot of people on here who have both PCS and UC, so you are not alone there.

I spaced mine out a few years.

Jeff

Hi everyone.

Thanks so much for the input.

I’m feeling much better now, and am hoping I can work unmolested for awhile. Hopefully this last attack was related to a colitis flare and gallbladder removal. I’ve altered my diet to as paleo as I can, and trying other lifestyle changes.

My family and I have agreed that the next episode will be my last for work until a new liver.

Hi fcmmark.

I take stellera for colitis and that’s it. Thanks for the kind words mark. Much appreciated.

Thanks Christensen. Good luck with your health too.

Thanks Sarah. I’ve been looking into getting into something else.

Good luck with your health.

Thank you Josh. Sorry for your struggles. Good luck with the future.

Thank you Mary. Have a virtual appointment coming up. I’m gonna adress this with the dr. Thank you.

Great to hear your doing well semper. I agree with what you said, we are all consumables when it comes to the workplace.

Thank you for the advice Jeff.hoping I can go normal for awhile.

Thank you all once again for all the advice. It’s much appreciated. Sorry for the short replies, have to do something with the wife but I wanted to get back to you all.

This is a wonderful community, because of you all. Much thanks to the founders for providing a great public service.

God bless.