A brief intro to me and my life with PBC

Hi all I am a 44 year old woman who has been living with PBC for 14yrs but only diagnosed 13yrs ago. I am married with two children aged almost 8 ( his birthday this coming Thursday 23rd ) and an 18yr old daughter who is turning 19 in few weeks. I have had the awful itch lot of people with PBC have to a greater and lesser degrees 24 / 7 since 2001 this is the symptom that actually made me go to the Dr. The fatigue and joint pain was also havin I put down to where I was working at the time (care of the elderly hospital ward with capacity for 36 patients and it was usually full to capacity so very busy and I worked full time then doin 12hr shifts ). The only thing ever helped me with the itch and does still to this day was a medication called Questran Light. Doesn't take it away totally but does bring it down to milder tolerable levels. Have not let Pbc rule my life just took my meds attended my liver clinic appointments and got on with life which was the very good advice the consultant who diagnosed me gave to me telling me also that my life expectancy was not shortened because of this diagnosis as he had many people in their 70's and 80's living with PBC. So took this advice. Have completed a diploma a degree had a baby and gotten married all since my diagnosis. Life is for living is my motto.

16 Replies

  • Hello mayday-Yeah.

    Good for you, that is how I take this whole PBC (or Pretty Bloody Crap thing as I call it!). Life is definitely for living and enjoying oneself especially when we have been diagnosed with something that currenly we are informed ther eis no cure.

    In the early days of PBC I think I thought that I could get rid of it, that it wasn't what I had but over time I came to accept and decided I'd just deal with things as and when as opposed to worrying myself silly as to if they would ever occur when they might not do.

    I started itching myself early in 2010 and that also is what took me to a GP. I was then diagnosed with PBC 9 months on from starting to itch. The itch for me has lessened over time and now I only really get bugged with it at night. I have so far decided I do not want any additional meds to the urso as most of the time it is tolerable and I think if I did reach a desperation level I would indeed seek something to give it a try.

    I was 45 when I started to itch, 46 at diagnosis and next week I am 51.

    Like yourself and joint pain, I thought I injured my shoulder at work (manual, 5 days per week) the year before I started to itch. I find that days when I have been lifting things or when my granddaughter is with me and out walking and she pulls on my arm I tend to get the ache the following day so doubt mine is through PBC even though it is the right shoulder that a lot of patients with PBC have mentioned.

    I have at times in the past 5yrs felt I have been sort of short-changed as I was widowed before I reached age 30 and left with a 7 yr old and a 5yr old to raise and then as they had grown-up themselves, I thought I could start to get on with my own life again without that same worry about what would happen to my children if I was no longer here (my mother died before my oldest was aged 1) and then just as I got together with my now husband and we had only been married 9mths along comes the itch.

    So good to read your experiences and here's to us both and everyone else who chooses to crack on with life despite this PBC.

  • Welcome.. I am sure that you will find a wealth of infomation on here. Ther is a brilliant crowd on here all ready to chat to you...

  • I had an emergency liver transplant in October 2014 at the Q.E. All went well but I am now experiencing pains in shins,feet and ankles and very little energy. I am 65 next month. The consultant said it was nothing to do with the operation. I have had a blood test for Vit D haven'nt heard anything yet? I know I am lucky to be here but sometimes feel low when not being able to do anything. Before my transplant I had PBC.

  • I had my TX done at the QE in Birmingham in June 2013. But unfortunately I now have a problem and my next move is another transplant. If you feel down there is always some one ready to chat on here...

  • How are you feeling Brummi?

  • Hi, I have a slight tummy ache today but nothing serious. Now awaiting my liver assessment on 11th May. Hows you..

  • I'm ok. Stage 4 for who knows how long. All enzyme levels are up but bilirubin seems to be fine. Cirrosis is progressing but not at an alarming rate.

    More worried about you having a second tx!

    Will be thinking of you and hoping for the best!


  • Well done love your attitude I've only been diagnosed a year but I've stopped worrying I get on with it good days bad days & an annual check up. Watch my diet & became t total by choice & things role on as normal. Good gp who deals with any. Questions & of course the.foundation

    . But the worry has gone & life's for living. X

  • What a lovely positive post that will give encouragement to so many other people.

    I was dx nearly 6 years ago but the consultant thinks I may have had PBC some years before dx. After about a year of denial and ups and downs I now just get on with life as normal. I'm still working full time and aged 62 this year, so things are not so bad.

  • Thanks and good for you. You put me to shame I had to cut down to part time work few yrs after diagnosed but it was more so could raise my daughter who was only 6 when I was diagnosed, but have kept working up til just the end of Jan there when it really became too much physically and mentally I was on the transplant list for 5months at that stage. Still waiting to get my transplant hopefully not b too much longer as specking to consultant last Fri and reassured me statistically speaking I should b called soon. Fingers crossed!

  • Thanks everyone I think the best way to deal with this disease is to keep positive mental attitude and if by the way you ever get the chance to attend the PMA workshops that the Pbc run do go they are brilliant and like this forum a good way to meet others with PBC and learn from their experiences and have a bit of a moan but also a jolly good laugh. Have found the Pbc foundation a great help over the yrs too particularly in my tougher down days. Got good advice and support from them. Thanks Robert and Colette hope to become a volunteer once have had my transplant and recovered from it. Watch this space! X X

  • This has helped me so much! I'm still struggling since dx a year and bit ago.

    Thank you. X

  • Good for you!! I have same attitude to my life. I have had PBC for over 16 years. Next week it will be 9 years since I had my op for breast cancer. I turned down Chemo because no one really sure what it would do to my liver. I just keep busy and am interested in lots of things and sing and keep active - positive thinking.

  • Hello mayday !

    Your very welcome here & thanks for sharing with us . I'm Lynda I'm 39 ( 40 in july) Dx 11 yrs ago have good and bad years along the way but I really find myself Starting to feel the grip of pbc taken hold of me. It's something I've pushed to one side for a very long time but I cant seem to do that anymore. Don't get me wrong I work full time & bring up 2 children 16 & 8 on my own and I'm very active I cycle loads but I know and my body is reminding me now every day of this disease. From pains in my rib area to tender spleens. ... tired body and constantly cold / dry mouth lack of appetite I honestly don't feel the same person that I was even a Yr Ago it's really becoming a reality to me that I am sick inside ..... it's such a hidden illness everone thinks I look so well but I know that's not the truth ..... I have nodules on my liver and cirrhosis is present. I feel a lack of understanding

    And support and it's a lonely hard road to face .... so grateful for these forums! Thanks for reading ! X

  • Hi Lynda I have found that that is hard to deal with people constantly telling me I look well when am far from it now with now waiting on a transplant. I suppose I can't blame them as I am walking round with what appears a deep Mediterranean tan( I am Irish so I used to be milk bottle white!). I used to tell people why I have this lovely tan but got fed up eventually as too time consuming? Now I just tell people this is my natural skin colour and leave them envious of me!lol! Little do they know would rather be milk bottle white and have my health any day! But hey can't change it so have to accept it and keep living! X

  • Hi Lynda. I was diagnosed in 2003 quite by chance due to a blood test after I had my son in November 2002. My legs were still swollen so my GP did a blood test to check my kidneys and ticked the Liver function test box too! I was beyond shocked when I was diagnosed and had an emergency appt at the QEHB but since then, I've not had a single day of symptoms! I feel quite a fraud sometimes! I am now however taking Urso, not very happily I may add!! And they discovered a gall stone at my last ultra sound, but lots of people live with gall stones quite undiscovered.

    My life hasn't changed a bit and long may it stay that way!

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