My first blog

I'm 53 and due to see my consultant next Monday for what could be life changing news. My father, who has passed away, and my sister suffers from Primary Billary Cirrhosis. I have some of the classic symptoms, intense itching ( since Christmas) dry eyes and mouth and bouts of diarrhoea. I've found this site whilst trying to understand what I can do myself to improve my symptoms and found that the support and advise given from individuals who have been diagnosed and treated for the same condition offers a wealth of information and support to people in the same or similar position which is heart warming......... However I'm not sure what my next blog might say.......... It's quite frightening really..

6 Replies

  • Hi, firstly try not to worry too much, why worry about something you may not have. As you say there is a mass of infomation on here and good people to chat to. I hope it all goes well for you and keep positive.

  • go to the doctors and ask for a blood test and a scan ,I have just had cirrhosis ,you tend to get tierd and light headed ,drink lots of water and get to you gp asap

  • hi there and welcome!

    Make sure to write down any questions you may have ahead of time, and then bring those with you. I find that always helps me :)

    This is a great site with lots of great info and wonderful supportive people. I am so grateful for the day I found it. Before that, I felt terribly alone. And very afraid. All the information, the medicines, procedures..and you end up feeling like you need a medical dictionary with you 24 hours a day just to understand.

    For my first big visit, after they had done all these tests and blood work, the nurse came in first with a small notepad and a pencil. I looked at her, quizzically, and she said, "This is because today you will probably get a lot of information, and you might forget most of it. This is for you to take notes, and write down instructions. When you get home you can continue to use it for questions you want to ask and the answers you get, your lab results, etc". It was a good thing. I personally think all doctors should hand those out when giving a major diagnosis. It also scared me a little bit..because I knew if I needed that, there was something terribly wrong.

    but that is just my experience. I would encourage everyone to keep a notebook for appointment dates, procedure results, questions, concerns..everything!

    Every time they change your medication..the list could go on forever! lol.

    I hope your next 'post' will be filled with good things, but either way, know that we are here for you and sending you good thoughts and prayers!

    Good luck!


  • I got directed to this site my hep nurse. I'm starting treatment this month and although I'm glad it's starting, I'm terrified. It's nice to know you're not alone, other people have the same symptoms It's good to pop in now and again especially if you're feeling low.

  • If you can, get a close friend/relative or partner as 'clued up' as you are, and take them with you. Give them a copy of your questions and worries, and then they can jog your memory or even ask for you if you become daunted or 'blank'. It's hard to remember everything in those situations - and to remember that you may need to gently remind the consultant that you are a worried human being (not a name on a list) and need gentle, understanding communication and care.

    Meanwhile, read all the info on the 'BLT Site' (link at the top of this page) and also search for the 'PBC Foundation' website - they host another one of these sites on 'Health Unlocked' . There is a link to their own website on their 'Health Unlocked' site, and you can find up-to-the minute info purely on PBC if you been told that you definitely have PBC. If you join (it's free) you will get a copy of their 'PBC Handbook'.

    Reading all the posts on there may help too, but PBC is a very varied condition, so you need to have a good look around - eg I'm a member, but not typical, as I don't (yet) have PBC, as I only have AMAs: but no symptoms and my liver function (blood) have been perfect for 23 years - so I'm not diagnosed as PBC, tho' I may yet get it.

    Above, don't stress - it's the worst thing for all autoimmune conditions. Treat and coddle yourself and do things you love: so, watch/do/sing/dance - especially anything that makes you laugh! Take care.

  • Hi all, many thanks for all the replies to my first post. Trying hard not to worry but having received your advice I do feel better prepared for Monday's appointment. Thanks again

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