PBC new diagnosis - not sure I want to live thru it

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Just diagnosed tonight - sent an email with my lab results. Early stage and will be treated with long term medication per doctor’s note. He emailed me.  Doctor appt isn’t for one month but I am going to try to move it up. 

Question - why would I continue living? It sounds like I take the medication until I need a liver and I also stop drinking - which I didn’t do much of anyway ~2 drinks/week - so I am unsure why I would suffer with this only to die in a few years  I’m 50 and it sounds like I will live another 7ish years. Will need to quit my stressful job I love and spend less money, which I enjoy spending, and no more wine with friends. Which I also enjoy. So why hang in here if it isn’t going to turn out all right? I don’t see an upside if there isn’t a cure and it’s going to lead to more pain to just die young. Not sure why I would save funds for retirement either since that won’t happen. Do people actually commit suicide over this, and if so, how? 

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5 Replies

  • Posted

    Hi I'm really sorry to hear your diagnosis, you say is it worth living with this disease, I don't know, before your tests etc were you happy?? Also you say you don't drink much, well then you want miss it as much as someone who was a heavy drinker, you say also that your life span is maybe seven years, where has that come from, you have been caught early so there are many things you can do to help yourself, are you over weight, do you have raised cholesterol and are you generally active?? I know at this moment your feeling very down and nothing I can say will help that but I'm sure just reaching out and talking to people who have survived this and are still living just to prove the diagnosis wrong.

    Even worse case scenario seven years is time for them to come up with better treatment, 10 years ago the treatment was not great, now its so much better, do you have any contributing factors

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  • Posted

    Sorry to hear your ne it isn't  ws and im also sorry to hear you are so depressed, who gave you the prognosis and who did the blood tests, I know of a few people who also have pbc and many of them have had it for many years and take medication which seems to keep it at bay I myself am being tested for it, autoimmune diseases such as sjogrens can cause pbc I have sjogrens and don't drink alcohol at all and never have so it isn't always associated with drinking although I must just add that drinking isn't going to help and I personally would be as kind to my liver as possible. Hopefully when you see your gp you will be given more information I am seeing a gastro specialist.

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  • Posted

    Can I suggest you get in touch with the Pbc foundation. There are members in their 90s so it does not necessarily shorten your life. None of the information I have read suggests you would only have 7 years to live so long as you take the right medication and are under the care of a competent liver specialist.

    I have to say I am horrified that you were given this info by email - something life changing like this needs to be told ideally face to face, or at the very least by phone so that you can ask questions.

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