Primary biliary cirrosis

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Primary biliary cirrosis

Postby yummymummy90 » Thu Jan 28, 2010 5:48 pm

I found out two years ago that I have this, and I dismissed it because the doctor pretty much told me to. Now I've looked into it and the life expectancy quite frightened me! Does anyone else have this?

I can't get this out of my head, I have a six month old daughter and a boyfriend and I can't bear to think about leaving them :(

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Re: Primary biliary cirrosis

Postby peecee » Thu Jan 28, 2010 7:18 pm

Hi, YM.

I'm the first one to reply in your thread, because I've never come across your problem before now (so I've checked ONE website about it now), but I've got a friend who has pulmonary fibrosis (to do with the lungs, not the liver). I've read every single website on the planet and frightened myself into a quivering mass, so I DO understand what you're asking!

Instead of reassuring you about your complaint, which I have no right to do until I've educated myself, let me tell you about someone in the same situation, i.e. same queries and concerns. My friend is on a clinical trial for his complaint, we don't know if he's on a real drug or a placebo - but his results over the last year show that he's fairly stable.

But every time my friend goes to the specialist or the GP, we prepare a list of questions. The answers vary - so does website information. Just over a year ago, he was told by the clinical trial nurse that he had two years to live. Now he's got 5 years :o , and the nurse is telling him off for remembering that she said two years...? ("because it's MY life, you daft bat"). His GP is much more down-to-earth and helpful. No promises, just information and understanding.

What I'm saying, me dear, is that although I have no experience of your particular situation, I am quite prepared to say that on the internet you will find information telling you that you have 24 hours to live, or that elephants are pink, or that viagra washed down with Guinness will cure your cough. You really need to talk to your GP (do you trust them?) and make them listen to your concerns. Write down your questions, write down the answers. Don't let yourself be fobbed off. DON'T lose sleep thinking that you might not be here next week, make an appointment with your GP and get some answers.

Petal, pm me if you want some input on your list of questions for the doc, ok? :)

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Re: Primary biliary cirrosis

Postby Bel Bel » Mon Feb 01, 2010 4:20 pm

I too don't know about this but my step dad had tb as a youngster and has holes in his lungs and was told not to smoke of he'll die

He has smoked for 40+ years and still has the holes and hasn't died yet.

Sometimes these things are scary and I agree with peecee to get back to the doctor. Can you be refered to a specialist who can talk you through everything? Also I think a positive state of mind can amke a massive difference to how your body copes with illness. Stress juts puts the body under more pressure and usaully means it has less energy to fight the illness. I have ny own long term illness and can tell you stress really plays havoc with it and casues me much more flare ups and problems.
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Re: Primary biliary cirrosis

Postby Skarlet » Mon Feb 01, 2010 4:25 pm

Hi YummyMummy,

I did a search on this and found a support group. http://www.pbcfoundation.org.uk/ It might be of some help for you.

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Re: Primary biliary cirrosis

Postby Bel Bel » Mon Feb 01, 2010 4:37 pm

I work in a medical company so I made some enquiries and apparently with the right medication life can be prolonged significantly and you can lead a almost normal life. Please go to your doctor and request to be refered to a specialist. If you get no luck then go and see another doctor
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Re: Primary biliary cirrosis

Postby yummymummy90 » Tue Feb 02, 2010 2:11 pm

Thank you for your replies :) I'm going to the doctors next week with a list of questions (thanks to peecee!)
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