Hi I'm a 47 year old women I have just been diagnosed with PBC. My scan shows late stages but whilst staying in hospital ....

[Fernleard]

my consultant said that my appearance and well being is confusing him. I am waiting for another scan and biopsy and they have said they are transferring me too either Kings in London or a hospital in Cambridge. I have been off work for 7 weeks now . Most days the fatigue takes over and at night my bones feel just like having the flu. I work in London and have to travel a lot I just don't know how I am going to cope.. I have my employee visiting me about the long term sickness on Thursday. My Family are worried because they see me each day and are worried about me returning to London . I'm just so confused about it all its just a shock all of this.. I just don't know what to do. Will I always feel like this?

[Jackie71]

I had similar diagnosis in 2010, ended up in hospital for nine days, weeks off work, but went back to full time, yes do feel tired and have learnt that my energy levels work from when I wake up in the morning and once I get to the point where I am tired that is me done for the day. I was diagnosed with late stage and presented all the symptoms at once including ascites so take 250mg urso 2 in the morning one mid day and the other two in the evening plus water tablets to control the ascites. The stress of living with the 'illness' is daily and I have found that diet is really important factor, no alcohol, no foods from a packet - I make everything from scratch, limit fats to practically nothing and watch the amount of carbohydrate - so I have become incredibly healthy and very boring though I do have my moments and I do go out for meals. Initially lost weight and I weigh myself at least every other day as paranoid about the ascites. Initially the itching was a nightmare but touch wood I have been itch free for months and I put it down to diet if I stray on to sugar and fat rich foods it does come back. For me the next stage is a liver transplant and although not in need yet, I am shortly to be introduced to Addenbrookes for an initial assessment, which really upsets me because it brings home how ill I am and I try very hard to hide the fact. So really what I am saying is even when diagnosed stage 4 push yourself and make the most of everything. Wishing you well.

[littlemo in reply to Jackie71]

Hi Jackie was just reading your reply and wondered how you are doing now? Did you have your transplant assessment and what was the outcome? Are you still working? I only ask as I am waiting on the outcome of a biopsy which I think may show late stages of PBC an possibly also AIH overlap. Thankfully dont have the Ascites and am maintaining my weight and apart from the horrid itch which have always had and fatigue I feel pretty "well" though my LFTS and slight Jaundiced appearance say different. Find this PBC a very ironic disease as have found over the yrs that the times I have felt horrendous liver viewed as "stable via LFTS but times I am feeling ok LFTS are "up the creak!" Hope you are keeping as well as you can. Bfn. x

[Jackie71 in reply to littlemo]

Went to Addenbrooks and it is huge, not been before. As normal took plenty of blood and I have to go back for ultrasound as they want their own team to do it and not depend on the ones from local hospital. I gather that I have been referred so that I can be known to them should I need to go on transplant route. Seems to be that they prefer to do them when you are more healthy and not 'really' ill, also age plays a part too old and you go down the list as recovery is less. Before I went I was terrified and had all but made my mind up that I wasn't going to go down the transplant route but do feel lot more confident about it now. Only problem being that Addenbrooks is long way from home so going to be expensive! I do work full time, do suffer with fatigue but I seem to have come through the itching used to be awful but for the last 6 months have been itch free, fingers crossed that it stays that way. To have some control over fatigue I just try to keep going as once I stop then I don't re-start until next day!

[littlemo in reply to Jackie71]

Thanks for reply Jackie your made of tough stuff I think. I work part-time and find that enough as when I come in from work I have to lie down for about an hr so that can keep going rest of day and more importantly keep up with my 6yr old son who would keep a nation busy not to mention my 17yr old daughter for whom her parents are basically for 2 things money and taxi rides! Its tough sometimes keeping the right balance between work and home but thankfully think have got a good balance at the min. Dont know how you work full-time! Take care and stay in touch.

[Fernleard]

Thank you Jackie for your response I understand what you are trying to tell me, i'm seeing my doctor in the next few days then I can discuss with him about work. Its a shock when you first find out I am still trying to take it all in but it helps to know that there is other people that understand. I am waiting to see a dietician but I make sure that I have a healthy diet with no salt. I have lost weight too but not from the stomach will this always be like this? My scan is showing chronic liver cirrhosis I am waiting to have a biopsy. I wish you well too many thanks. Maria

[littlemo in reply to Fernleard]

Hi Fernleard was just reading your post. How are you doing now, did you have your biopsy done yet? Kings is a great hospital so it will be great if u do go there you will be well looked after. Was it a Fibroscan that diagnosed the chronic cirrhosis? I am currently waiting on result of a biopsy had done last Friday. I had a Fibrosan done 2yrs ago which showed advanced Fibrosis possibly early cirrhosis and at my last apt consultant felt I may have developed AIH overlap hence reason for biopsy. I assume it will also stage the PBC so am waiting with baited breathe as he also told me at last apt he feels that I will need a transplant in the future but its a question of when which was a big shock. How did you get on with your employer? Over the yrs I have had to change jobs and reduce hrs but thankfully am still working part-time (18.75hrs/wk) and have the support of Occupational Health if and when I need it. I hope you have an understanding boss an a good OCC Health department. But mostly hope you are keeping as well as you can. Bfn. x

[Facegirl7]

Just remember to breathe. It's tough news to hear, and most of us don't look sick(my doc didn't take me seriously until the results of my biopsy). I am pbc stage 3 with autoimmune hepatitis overlap. I am 51 and was diagnosed a few months ago. Cirrhosis is scarring, and in later stages we just show that. Most of us walk around with this for years and not know. My hep doc says I've had it years! I pray that once you are on treatment you will begin to feel like you again. I am on Urso as well, and budesonide for AIH. Puffiness should improve. I had swelling, joint pain, and my hair fell out!!!! Hair is coming back and I feel like me. Be good to yourself. Rest. And trust the folks watching you. And if it would ever come to transplant, us pbcers do very well! Much love!

[Fernleard in reply to Facegirl7]

Thank you so much for your reply its helping me so much I no longer feel alone. Are you working? The thing that frightens me is that if I return to work where I am doing so much my confusion will come back and that's one off the side effects I struggle with. Do you know if there is anything I can do or take to help me sleep at night? Ive had yet another sleepless night.. Thanks again for your kind words and advise I send you love and best wishes.

[spoul in reply to Fernleard]

Hi there felt I had to reply to you about work. I was diagnosed 15yrs ago at age 39. I worked as a midwife and over the next 12 yrs they made adjustments to my work as Pbc is covered by dda. However 3-4 yrs ago it became apparent to me that I would have to apply for ill health retirement. The fatigue was overwhelming and I had to go to bed after work, my concentration was also affected and doing the job I did I was afraid of making mistakes. I took time off sick frequently but it was never long before I was off again after returning. I took advice from the union and retired 3 years ago. My quality of life is much improved, my fatigue is still there but I pace myself. Hope this helps you x

[Facegirl7 in reply to Fernleard]

Hi! Yes, I am working but I am a private contractor and my hours are flexible. I have concentration problems at times. I try really hard to work through it. My doc says I can take Benadryl to sleep. Your doc may ok that for you. Try to rest. Only one day at a time. Xoxo

[littlemo in reply to Facegirl7]

Hi Facegirl was just reading ur reply there, were u diagnosed with PBC and AIH overlap at the same time? I only ask as I have had PBC for 12yrs (diagnosed 11yrs ago) and recently my new consultant is querying if I too have AIH overlap. I had a biopsy done last friday to rule it out or confirm the AIH and I assume the stage of my PBC. So am on tender hooks. Does the AIH give you much trouble?

[Jackie71]

I think that everyone is different but I rarely have complete nights sleep and I think you just get to muddle through. Work wise I went back on half days for fortnight and then back to full time and apart form the odd days sick have managed. The fluid is a problem while in hospital I did have two drains where they took litres of fluid off me and after that did feel better, I have to say by the time I get to the end of the day my clothes are tighter than they started in the morning so the fluid must always be there. You probably won't have a day when you don't think about your illness but you have to think of all the positives and there are plenty of them, I wasn't ready to die when diagnosed and that has been my outlook throughout. Take care

[Lil55]

I was diagnosed at age 39 and now I am 58. I had a needle stick injury ( I work as a scrub nurse in the OR ) and blood tests revealed a problem with my liver. Biopsy showed I had severe cirrhosis already but the body has an amazing ability to cope ( at least in my case ) and it was only July this year that I had to retire from my work , and am now to be assessed for liver transplantation. Once the shock of diagnosis wears off you can learn to live with the disease...often not easy because people say " you look well" just take it day by day and let them turn into years.

[meandmypbc]

I see I have much to learn about this pbc, I was diagnosed yesterday .I have no symptoms except shock in knowing what I have !! I have all sorts of tests to look forward to !!

The probkem I have is telling my boss !! Not sure how to approach it !!

Im not really sure how I feel about it yet !!

[Anne123_45 in reply to meandmypbc]

Hey I got diagnosed in may same for me massive shock.. My boss was great.. What I found and I include myself is people have no idea what the condition is.. This is a great site.. Support 24/7

[meandmypbc in reply to Anne123_45]

Thanks for that !! I will let you know how I get on today with my boss !!

[Fernleard in reply to Anne123_45]

I agree with you this site has made me smile again....

[Fernleard]

Thanks to everyone that replied... I feel for you meandmypbc I have only just come to terms with this, I have a meeting today with my manager and HR.