Hi all
Have been told I am at stage 2 cirrhosis as have small ascites and varices ...feel suddenly very low and sad and strange about it all..I have had PBC for many years and now this is all so fast..does anyone have this too? Or am I better in the general health unlocked for liver disease? Would like anyone's thoughts
Thanks
Hi Bobby. How long have you had pbc for and do you know what stage you were at diagnosis?
I’m setting up a list of questions to ask my doctor at Mayo.
I am happy to ask questions for you. Message me if you would like.
Did you take Urso from the beginning of your diagnosis
I hope that you can get your answers and somehow we all have to find peace with what we are going through
Hi There was no treatment when I was diagnosed 23 plus years ago and no stage given as it was all quite new then, and then never offered Urso until a few years back when my bloods went off scale. Initially I was ill with Urso and said I wanted to stop it...no-one seemed bothered as bloods were better again. Tbh I had no symptons earlier so never thought about it at all. In retrospect I should have been told what could happen years ago. My main question would be now how long have I got! transplant would have to be considered as I am 68 and although not that ill, my consultant has mentioned pre assessment if my liver ascites and varises history scores show this is possible. I am waiting for an ultra sound.
All the best
Hey, Bobbycat! Okay, you find yourself in the spot and it sucks! I was diagnosed last May stage 3. Severe fibrosis. But what are you going to do about it? I don't think there is much else to be done if you are taking your Urso. You can worry and be sad but the disease remains. I have not seen anybody say what can be done when we get to this late stage. It could be you can stabalize where you are. If you are feeling pretty good of a day, get out there and enjoy it. If you're feeling poorly baby yourself and try not to worry avout the next horrible thning until you get there. Personally, I am no saint at this. I DO have this talk with myself every morning....or every 15 minutes depending on my mental state. 😂
Please keep us posted on your journey.
Pam
Thank you....you will see my history in reply to jenny and possibilty of transplant assessment......maybe. I feel quite well at present, just more tired and low and snappy sometimes with my husband! Also get flustered. I am not sure anyone I know really understands, though I have told friends but not over played it. I keep thinking this isnt happening but it was only a few weeks ago the ascites were discovered and my score showed I was now stage 2. I suspect I will get used to the idea soon.
Hi bobbycat. I've only been diagnosed a little over a year ago. I have bouts of sadness...some days I can't get moving. From what I've read it is not uncommon to have depression with PBC. Definitely talk to your doctor about it. I am taking 300mg of Bupropion for depression. I started it about 6 months ago. It has definitely helped me a lot. I started on Paxil a few months before and it was FANTASTIC but the sexual side effects were terrible so I asked to be changed to Bupropion. I started on 150mg and while it helped it wasn't enough. Now I'm on 300 mg and I have a new lease on life. I hope I helped. Feel free to message me if you have any questions.
Michelle
So sorry you are sad Bobbycat, I guess you are having to adjust to this new development like you adjusted to having Pbc originally. It is not easy but I am sure you can rise above it to a place where you can feel happy again. My thoughts and best wishes are with you. Keep in touch. Diane x
Hello I am in early stages of cirrhosis.When I found out my pbc had progressed to cirrhosis I was very upset and shocked but over time I have got used to the idea, it is hard but I hope you can get to a point where you can come to terms with it.I decided to live my life as well as I can considering and have found that having something medium term to look forward to has helped me, such as a holiday or family event. For the last two years it's been my daughter's weddings and my son's graduation I was determined to see those when told I had cirrhosis 2 years ago.I am 54 and I hope to live to see my grandchildren born, I realize I probably won't see them grown up unless I have a transplant but there is always hope of that.Good luck to you.If you don't find things improve I would suggest to go to see your gp as they may be able to help you.Best wishes Jane.
Thank you..it was being told it was second stage that has got to me....and given a lower life expectancy without a transplant ....I am fairly busy as retired so I do quite a lot really including walking etc but get much more tired. Been advised not to go abroad on holiday if possible ..we will see....its nit the end of the world as the UK has a lot to offer.
I am sure you will see your grand children born and grow up if not to adults maybe ....but who knows!
All the best Bobbycat
I understand Bobbycat. This disease leaves so much open to the imagination, as stages and symptoms change unpredictably. I wasn't staged until 8 years post dx and then was told stage 4 cirrhosis. Was told by a friend with MS to take my head off and screw it on differently. Easier said than done for me. Still, when I appreciate each moment, I find that I don't think about the future too much (which is a surefire way to sprout tears for me). Our menagerie of children, pup and cats keep me in the now. Much love and hugs to you.
Liz
Hello bobbycat,
I'm sorry and I feel for you.
When I was diagnosed last fall I was told it was early.. preclinical. When I was at the Mayo Clinic, I was told that I'm much later stage or that there is an additional disease process going on. My husband made an offer on a house and applied for a corporate transfer within the week so I can be treated at the Mayo Clinic. I'm waiting for further testing later this month.
Anyway, I found myself in a very dark place. I was hurting and angry and scared out of my mind. Not only do I have this going on, my ex-husband is being an ass and literally saying to me, the court and my children that he thinks I'm making this up. My sister is distraught.... And me, I just want to get to the doctor who can provide the best care. We're scheduled to move by the end of the month so it's coming.
I was very upset...and somehow I woke up one morning in peace and it has not left. I've made peace with my mortality. I've made peace with the fact that this is all going to end the way it is going to end. It's going to work out the way it is meant to. It's not going to necessarily work out the way I want, but... Like I said I'm at peace.
I hope that you find peace. And for my immediate family when I stopped being sad and became peaceful... That is what scared the hell out of them. I still get scared for my children and my husband but I'm no longer fearful of my own fate.
Work on finding that peace because it feels awesome. ❤️ Everything is going to work out the way it is meant to.
Hi IAmTheGlue i read your message and thought wow thats just me . I am also at peace with my condition but scared for my loved ones especially my youngest daughter . I hope and pray that all who are diagnosed with this horrible disease can reach the same place as us as thinking about dying can consume you. I just have to ride the symtoms every day that i suffer from pbc and they are severe some days . But i now longer think about death
I am newly diagnosed with PBC and am having alot of bloating and abdominal pain. I cannot see my liver specialist until August.
Diagnosed with pbc last week, after 3yrs of chronic muscle pain, 
Hello everyone, I've been diagnosed with PBC and Autoimmune Hepatitis Overlap Syndrome in July'13.
I'm a 50 year old male recently diagnosed with stage 3 PBC, my mother has/had it (stage 3 PBC) since 1987 and is still alive today.
How high were your LFTs when you were diagnosed and what stage were you in
