Will things get better or is it just a slippery slope from here?

Got Diagnosed with Congenital Liver Fibrosis a year ago after having my Baby. I was wrongly diagnosed with chloestasis of pregnancy, long story short after a lot of tests I was the diagnosed with Liver Fibrosis. I'm 20 years old now, have been hospitalised A few times this year now. This month alone I have been hospitalised twice due to portal hypertension- vomiting blood and black stools I have also been told my disease has progressed onto cirrhosis. I'm complying with my medication, I don't drink or take drugs and I just can't seem to get any better. Does anyone know what the future will hold for me- life expectancy?? I'm 20 I've just had a baby and I'm wondering if I'm even going to be around to watch him grow up, surely there's something more my doctors should be doing to make sure this doesn't keep happening to me. Just so fed up!

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  • Hi Taggiem... I think youre asking the million dollar question that all of us with cirrhosis want to know the answer too. But i dont think there is one. I have cirrhosis due to alcohol, was diagnosed about 18months ago now and luckily havent had any serious problems yet.

    There are folks on here that are still going strong 10 years or more after diagnosis and I hold on to that fact very dearly.

    Given your age, if things did take a turn for the worse, Im sure you would be a good candidate for transplant, has this been mentioned to you?

    Good advice would be to avoid as much salt as possible. Definately avoid alcohol and just try to eat as a healthy and balanced diet you can. And above all... remain positive. (I know its hard but I swear my liver responds to a good laugh!) Keep your chin up and ask for advice on here. There are some very clever, informed and helpful folk around.

    All the best... Matt

  • Hi, I was diagnosed with cirrhosis at 27 years old. It progressed but I didn't need transplant until I was 42. Since transplant I've been doing well and there's every possibility I could be around until I'm in old age.

    So in answer to your questions, I would assume the Dr's will be keeping a close eye on you over the years. If you ever become ill enough for transplant there's every chance you'll get on the list. This potentially could prolong your life idefinately. Unless you have other complications you could assume that's how you will be treated.

    In summary, you don't have to worry how long you've got left. There's every chance you'll see your child grow up :)

  • Agree with what others have said. Do you even have a liver specialist/ hepotoogist? You need to see one. It doesn't sound as though much has been explained to you either. Push hard to get answers about everything. Xx

  • Hi yes I do have a heptologist just not sure about what they are going to for me in the long term. They're mainly just giving me short term plans. Third time I've had a osphagael bleed in a year at only the age of 20. I don't drink or do drugs and the medication isn't even helping me.

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