17 year itch or not

As I'm now entering my 17th year since diagnosis just wondering how many of you out there who have had for similar length time or longer without transplant?

I know that my life has changed over the years and although the deterioration is slow I can recognise there are things I can't do now that I could do say a couple of years ago. I retired on ill health 5 years ago and I have a better quality of life now. I accept the things I can't do and concentrate on the things I can. I have a caring family that support me ,which must be hard as I appear outwardly well.

My future is uncertain but I'm entering a new phase in a positive frame of mind and would be interested to hear your stories

9 Replies

  • Hi there! I have been diagnosed since I was 34 and next birthday I will be 57! I was diagnosed with early signs of PBC but in later years I had the additional diagnosis of AIH. The reason I was diagnosed so early was because I was itching badly and my mum had passed away suffering from complications from PBC - unfortunately no liver transplant for her. So I read the signs and saw a wonderful gastroenterologist who did a liver biopsy. So from then on I have not consumed much alcohol and it's only been the last five years (really since the menopause) that I had to go on medication. My family understand too - well at least my husband and my two sisters - as we all saw my mums illness progress - she was not as lucky as by the time she was diagnosed at the age of 56 her liver was already very cirrhosed and in those days not enough was known about it all - never offered any medication - she had heavy bleeds from the varices in her oesophagus and blood transfusions but for some reason she was never put on transplant list and to this day I do not understand why. However whilst my two grown up kids (son and daughter) know I have this illness, they have grown up with it and for the large part don't really understand or even want to - they see quite a healthy person on the outside and that's what they want to see. For the most part I feel okay so have to be grateful that I am in good hands and I fully understand my disease.

  • Hi there, that's really good to know that your keeping well after all this time. Unfortunately I do have extensive cirrhosis but as yet does not seem to be affecting my liver function too much. The consultant described it simply that the good liver cells are functioning normally.

    He also led me to believe that if you remained otherwise healthy they would consider a liver transplant up to age 70!...... Leaving me a 15 yr window as I'm now 55.

    Thanks for your reply and keep well


  • Hello spoul.

    As difficult as it can be with PBC at times, the irritations we find (ie the itch and/or fatigue) with it, that unknowing, I do find reading on this site about contributors who were diagnosed quite some time ago is most uplifting. As you know I passed by the 4yr mark a couple weeks ago and I am doing pretty well despite my night time itch.

    Hope we continue to be as less problematic as we possible can.

    All the best.

  • I have only been diagnosed a couple of months and have been off work (a very stressfull 45 hour a week job) due to fatigue and am very low with this pbc diagnose don't seem to know if I can expect to go back to work soon .? Finding it hard to take in information etc will this improve ? Is it finally knowing the diagnose or the condition that has me so physically and mentally low ?

  • Hi tessiecat

    I can recall those early months/ years trying to get my head around it all. I was a nurse/ midwife and I'd never heard of the disease so I trolled the Internet for first few years filling my head full of info. Some of this info was helpful some not....I also joined a support group in the early days and it really helped me although it wasn't local and I found the travelling tiring. If you ever get chance to go to the self management day courses that Robert from the Pbc runs, they are advertised in the bear facts and are invaluable. I made two good friends on one in Manchester 4 years ago and we now meet regular for a moan but our conversation isn't dominated by our PBC ......but we know we can ask each other anything.

    You mention feeling depressed and I can empathise with this. Having suffered from periodic bouts of depression before diagnosis it's difficult for me to say the true cause. I was very insular in my outlook following diagnosis until I found support thro Pbc foundation and groups. It helped me to talk about how I was feeling physically and mentally.

    There's only you know if you can tackle work again, I had to take Ill health retirement 4 years ago. It wasn't a easy decision to make but the only advice I would give as everyone's circumstances are different is before you think about reducing your hours consider the effects on your pension. Then consider your options (speak to your occupational health) our health is so important and if we don't have that.........you know the rest haha

    Hope this helps a bit, keep and well and keep in touch Sue

  • Thankyou for replying ... It does help greatly . I think I need to slow down on decisions I'm a bit of a control freak and feel my health is taking control of me !

  • Haha that made me laugh tessiecat because I'm just the same

  • I first had abnormal LFTs in 1996, aged mid-30s, though first bx wasn't done till 1999 as I had a pregnancy to contend with then too! At the time I didn't need treatment and I was 'watched' but not very carefully, I think with hindsight, till 2011 when my LFTs deteriorated quite abruptly. I was offered another BX which found fibrotic changes in my liver and bile-ducts. It was confirmed I had autoimmune cholangiopathy (which is a kind of overlap of PBC and AIH but with negative AMA). I have several other AI conditions and experience a lot of crushing fatigue, joint and muscle pains, mood swings, and so forth. I find it all pretty awful but my liver and bile-duct disease is under control, I am told. At 53 I can't return to the work I did as nurse in acute care, and I never seem to have enough good days to be able to work out an alternative plan. I feel I need to do something for the next decade or so till I can draw a state pension!

  • Hi witchiegirl

    Is ill health retirement not an option for you? I was in special group as a midwife I could get my full pension at 55...... I retired at 51 and they enhanced my pension to 55. I was awarded tier 2 but even tier 1 you will get what you've paid into your pension. I know how you feel I spent the last few years wondering how I could still do my job but worrying about how I'd manage financially if I finished sooner. In hindsight wished I'd finished before as the fatigue left you very vulnerable to making mistakes. Thankfully this didn't happen but the anxiety of 'what if' is draining in itself

    Take care of yourself Sue x

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