What is the life of a pbc cirrhosis patient, what can they do or not do etc etc.

[Bobbycat12]

there seems to be no definite hard and fast rules to cirrhosis..some have it for 15 years and are not too bad, others for a few years and are very ill...its rather like living on a knife edge especially with varice problems, luckily no swollen stomach yet! Not sure if PBC cirrhosis is the same as say Hepitatis or alcholic....though I read that the liver can repair itself with alcholic cirrhosis...

Its all reading up as had no real info from hospital..

Can I exercise with cirhossis? Can I have a normal life as much as possible, will the varice banding go on for always and beta blockers increase, will I automatically get water retention and confusion, how can I help myself re water retention ..I know salt is a problem..

Can anyone advise please?

[Sweetness_1]

Hi

I was just diagnosed with PBC Cirrhosis this past week. My sister has PBC, not yet at cirrhosis stage. And my dad had PSC and ended up with a transplant 16 years ago.

I trying read up on it to, my specialist gave me a phaphlet on cirrhosis and started me on 1500mg of ursodial.

[Sandie1 in reply to Sweetness_1]

I no I maybe sound thick, I was diagnosed with PBS in 2015, but I don't understand some of the"jargon" what is varicella problems?

[Sandie1 in reply to Sandie1]

Varice! !

[MistyField in reply to Sweetness_1]

Hi Sweetness,

I was diagnosed 2013 and now in stage 4. I am 44 and have two boys. We know of no one in my family with liver problems but I am very aware this is hereditary. I am wondering how old you and your sister are...my boys are 18 and 21 and wondering when we should start checking them?

[Jackie71]

I probably fit into what your explaining in that have been diagnosed with PBC for 6 years but must have had it for much longer just not picked up by anyone as went straight in with stage 4. Over those years it has worsened and now classed as Cirrhosis. In answer to your questions I work full time, try to swim twice a week, walk dogs, do all the things I did before except for diet. Diet has changed considerably in that I am far more careful of what i eat or drink you need to remember that with your liver everything you eat has to be processed via the liver and if it is damaged from PBC it can't function at 100% any longer so be careful and eat smaller meals but more often, I think that sort of works for most of us. Once the liver is damaged by the scarring of PBC is doesn't renew as with damage caused by alcohol induced cirrhosis. As far as the itch we all experience with PCB that has completely disappeared for me but if I fall off the wagon and eat too much sugar - which includes fruit, then the itch does return. The one thing I would say is that the whole PBC thing does play with my head even though to everyone else I look fit and healthy I know that I'm not. Just live for today and try not to worry about what the next stage will be, easier said than done but I think it is the right way to go.

[Bobbycat12]

Thank you ..have you got varices? They worry me as they bled and I was in hospital for 6 days....that was scary... But apart from some fatigue I am not too bad..I am 66 so no work now....but like to be and about

[gmo3352]

Hi Bobbycat12

I have been in the cirrhosis stage for about 15 months, and actually learned it was from PBC simultaneously. I know every body responds differently to meds and disease, but in my case, i actually feel so much better then i did before diagnosis and Urso. Because i do feel like a human agan, and can get through a meal without doubling in pain, i have reconnected wth friends, joined my husband in vacations again, returned to teaching (parttime) and just generally do whatever i can! also am in my 60's, 64, and i do yoga and walking which seems to help with both the bone pain and fatigue, as does the Vitamin D. I do have varices, but they are minimal and do not require banding. Cutting salt has really reduced the swelling. I also find that coffee and gratefruit help with water retention. I try to eat more plant based proteins, because i have so much muscle loss!, and replace things like ice cream with frozen greek yogurt ( less salt, more protein) etc. little things do add up! i also learned to forgive myself if i can't get the garden weeded this week, or the house isn't as tidy as i want, etc. no sense being a self-defeatist when this disease will do a better job of it!

I worry most about HE, and of course, longevity, but try so hard to keep those thoughts at bay. Life is so precious. Enjoy and live the best your body will allow. Laugh as much as you can....once we hit 60, i found i know very few people who don't suffer from a chronic or worse disease. An instant support group!

All the best!

[Bobbycat12]

Thank you that was reassuring. I think with myself it was the shock of the bleed and I was very weak when back from hospital and I think this hangs over me as well as the endoscopes which have left it hard to eat for over 10 days each time. However my appetite is much better with urso and that is good. I was told that I would get tired from from time to time and I do which is not normal for me ...the tablets for portal hypertension make me a little tired... So I can't imagine working! . I also have muscle loss especially in my arms which is really horrible ! I was told I could eat anything except for too much salt as I am underweight I was given these calorie drinks by hospital but they are very sweet but apparently this doesn't matter. I find it rather strange so I only drink them sometimes

good luck to you and keep in touch