I was diagnosed in May 2017 during and ERCP for biliary tract. In August, I had a flare that led to a 3 day stay at the hospital - very high bilirubin score and full jaundice. I was back to ‘normal’ within a week or so.
Living now almost symptom free, does it make sense I am tired at night? I wake at 6 am for work and want to crawl into bed by 8 pm every night. Normally I am a 10-11 pm bedtime.
just curious, I will be bringing it up at docs next month
Regarding tiredness, YES that is definitely a symptom of PSC. I would work all day and then come home and collapse in the chair often sleeping till supper. It’s a new normal for you. I do encourage you though to try and get at least 30 minutes a day walking or some form of core strengthening exercise now and the years to come. This will keep your body amidst the sickness in shape for a transplant should you need one someday. Very important. Glad your numbers have come back down. Often the ERCP procedure will give that reprieve which in early stages of PSC will last one or more years in some people. But as progression takes place the normal levels will be less frequent. Enjoy this time now and do all you can to stay in good physical shape. Live life, enjoy your family, plan for the future, and just let your body tell you when you need rest, another ERCP intervention, etc. Don’t let PSC stop you from living life! Take care.
PSC 2011 / Liver Transplant 2015
Thanks so much for clarifying. I do workout 4-5 days a week at lunch. Good cardio exercise has been my norm for 15+ years.
I appreciate your openness and input.
I have to say, many a night I’m crawling up the stairs and I feel like I am abandoning my wife - upside is no argument over what shows to watch
If you have a good foot massage in your family, get them to rub your feet at night when you are feeling bad or tired. That really was a blessing to me. I always looked forward to my dear daughter getting home from work each day. She would lovingly rub my feet which meant so much. My wife and my family supported me 100% through it all. The more family understands about PSC the more they will be able to help you when rough times come.
There were many evenings that I would come home and sleep for an hour and a half.
On some weekend days, I would take three naps, which included a nap right after breakfast.
While my wife was pretty understanding, I think at some point she resented the time away from her but covered it well.
This was informative. I get extremely weak during & right after an episode of fever & chills. Now I notice I sleep more often. It’s really hard to go through the day without a long nap. My husband has gotten used to my sleeping more & understands it, but I didn’t realize it was from the PSC. I’m not working full-time anymore, but work 3/4 to part-time. I just don’t have the energy to work full-time. My only concern is the fever/chills/nausea are so unpredictable. I drive for work & I’ve gotten sick in my car. Hopefully, I’ll be retiring in about 9 more years.
Merry, my experience with chills is that the two times I had them, I had a cholangitis infection. And with fever, my doc was pretty adamant that if my temp hit 101 degrees with no identified reason, get to the ER.
Don’t know what your doc has advised you, but both are indicative of cholangitis. Please talk with your doc about your chills and fever.
My doctor never mentioned anything about going to the ER when I get fevers. They usually last about 12 hrs. then suddenly stop.
The reason he wanted me to go to the ER is that the high temp can be documented, and can indicate several liver issues. It also helps in getting exception points to the MELD score if the doc thinks they can be justified.
How high has your temp gotten?
I don’t always have a thermometer when I get the fevers but of the ones I’ve checked, they are usually 101.
I’d definitely recommend visiting the ER with a temp at 101. Thermometers are cheap, buy multiple ones and always keep one close.
The problem is the only treatment for a fever of 101 is antibiotics. The fever would be gone before the antibiotic would have a chance to kick in. My GI doctor has me keep a record of how often the attacks are. Right now I get a CT scan & blood work every 6 months.
That is a poor decision by your doctor. Cholangitis is a life threatening condition. If you are suspected of having cholangitis, you should of course be treated.
I’m not sure what else my doctor can do at this point.
@JeffDC1 Thank you for mentioning the MELD score exception points that may be granted if they can document fevers/other symptoms quickly in an ER setting before they pass, my husband is on the transplant list now & we were really unclear for awhile why they wanted us to go in every time he had a slight fever. It’s clear to us now that even if it’s not an infection it helps the transplant team be able to build our case, really made the effort seem a lot more worth while after we knew more about why.
My husband hasn’t had a lot of trouble with being tired, when he’s not with infection - he pops out of bed to go for a run, goes to work (with some light extra breaks) - he enjoys taking a break in our office to watch comedy shorts or something to keep him laughing/enjoying the resting time as a bonus. Lately though he’s been more tired (also achey) yet also can’t get to sleep - has anyone experienced this or found helpful ways to aid sleep without taking medication?