Scared but trying to stay positive

I am 22 yrs old and just diagnosed with PBC. I don't know my stage yet. In the process of trying to get Medicaid in my state because I don't have any insurance otherwise. I think mine stemmed from my gallbladder. It was small and had alot of sludge in it. So I am thinking that bile got backed up in my liver and that is what caused the PBC. Just trying to reach out to other people with this and see how they are dealing with it. This has completely turned my world upside down.

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  • You have come to the right place nightowl. You will get plenty of support and information from people who have been through exactly what you are going through now.

    Look up the PBC foundation too. there is plenty of information and links on their site too.

    Also read all the questions and blogs on here. Virtually every question that you have on your mind is here somewhere

    Good luck and don't lose heart. x

  • I know I am a strong woman and I am staying that way. The surgeon who took the biopsy of my liver during my gallbladder surgery saved my life. Needless to say I am very thankful for him.

  • You are at the right place to talk about PBC. Its such a relief to be able to talk about it whenever you want, rather then constantly going on about it to those in the "healthy world". It will help with the feeling of isolation as people understand, as well as getting lots of information. It appears whatever symptom I start there are others with it as well, it is very reassuring.

    Take Care, fingers crossed for your results of your biopsy x

  • Hi Nightowl,

    It is always a shock when we get a diagnosis like this but just breathe and know you are not alone and also know that very few people these days get sick enough to need a transplant....

    Just to let you know (and other newbies) PBC is an auto immune disease. This is where your immune system is faulty, and in our case the immune system recognizes the cells in the bile ducts as 'foreign bodies' and attacks those cells. This in terms causes inflammation in the bile ducts. If the inflammation gets severe enough, bile acids can get trapped and leach out of the bile ducts into the liver tissue, causing inflammation within the liver and if this gets too severe, chirrosis and result. It wouldn't have been gall bladder causing the PBC, it is more likely to have been the other way around :)

    You will soon find many many people who live full lives with PBC and also many more who although have more severe symptoms, work around the symptoms and still have full and active lives. I was diagnosed with PBC over 11years ago and probably had it for many many years before, I too went through the fear, but now realise that most people remain asymptomatic for most if not all of their lives. I would recommend you read the articles on the PBC foundation website, they have some of the most uptodate information out there. If you arm yourselves with the correct info, it will save you a lot of heart ache along the way when you read a lot of incorrect and scary info out there.

    Just to end... ask questions as and when you need to and be kind to yourself x

  • I absolutely couldnt have said anything more .She - EAJSWW is right on the button and right in every way. Keep calm and focus of all the positives in your life while you work through this.

  • Well said EAJSWW! I was dx at the age of 25 and was scared to death! But you must just take a minute and breath. Know your not alone & you can't do this alone!!!! You need to have your family & friends learn about PBC with you because it will help you deal with it daily!

    Next important thing to learn is listen to your body.... Learn what it's telling you. I have fought many doctors over my health and know my warning signs and listening has helped me majorly! I have raised two children and live life to the fullest. I have good days and bad days which so will you but you can have many more good then bad! There are things you will have to change in your lifestyle like eating right and taking things at your OWN pace.

    It took me many years to learn but getting mad and stressing out makes things worse but if you tell yourself that "yeah I have an illness but it won't take over my life!" It will help you!

    I am thankful for every mintue I've lived and yeah somedays have really sucked but Other days was wonderful! If you ever have question feel free to ask... Even if you think something stupid ASK! Because support is so very important and remembering your NOT alone! Love ya and wish you the best of luck! :-)

  • Thank you all. Wish there was a "like" button, would have hit it for every comment. Just my penny's worth. Nightowl, they are all so right. I am diagnosed since end May 2012. This site has been a godsend. I actually enjoy it now haha, it's great to keep up with the gossip and going on, spats with Docs, diet info and practical advise on medication etc. :D I hope you sort your insurance and manage to get your head around things. Keep us posted on how you are doing. xx

  • Hi Nightowl -

    Welcome to the forum where the majority of your answers will be - tho' not all -:).

    This is where you can rant, rave, get stuff off your mind and we will all understand.

    They are right to recommend the PBC foundation. I might also recommend, being you are from the States (as am I), Mayo Clinic is awesome for Gastroenterology/Heptology and their website is mayoclinic.com. When you put together the information from both the Foundation and the Clinic, you just can't miss. Also, Mayo appointments are unbelievably easy to get, but I don't know about the insurance issue being I have Medicare. (I'm soon to be 71yr).

    Enough of the "commercials". -:)

    There really isn't much I can add to what has already been previously said by others. EAJSWW is right as for the Gall Bladder vs PBC. I was diagnosed Aug. of '07 and had my GB removed this past June.

    Just take things one day at a time and try to find at least one good thing everyday to be thankful for.

    Oh yes - most of us also take "private messages" if you ever feel that you need them. -:)

    Be blessed,

  • Thank you everyone for helping me understand. I am not even sure I have PBC. I got told I have cirrhosis of the liver. But I rarely drink and no hepatitis. So I have no clue until I go see a dr about all this

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