My relative has been diagnosed with cirrhosis of unknown aetiology...having never drank a drop in their life. Survival rates given by the consultant have been abysmal but no treatment plan has been outlined and still have a 2 month wait before the first appointment post procedure.
I'm not quite sure what to do or what I can expect as a treatment plan as the cause is unknown but have been told it's not PBC but possibly fatty liver burnt out and left scarring or an autoimmune cause which has left damage but not currently active.
Her weight loss is continuing and the dietician appointment is also 2 months away.
I'm not quite sure what to do or how to manage until the appointments and also how will i know if hepatic encephalopathy develops?
She already has stage 4 kidney failure unlinked to liver, but is there anything that can be done to reverse her cirrhosis or help her liver cope better. Portal hypertension is already there and aside from a check on her varices is there any other medication or treatment?
I'm waking up in the middle of the night thinking about it or i feel like someone has punched me in the stomach thinking about her dying suddenly or if there's an emergency and I'm at work.
Any advice would be appreciated!
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Sere51789
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Sorry to hear this. Cirrhosis of unknown causes often turns out to be caused by Haemochromatosis or 'iron storage disease'. I do hope she has been tested for this. It is the most common genetic disease but is vastly under diagnosed. Good luck finding answers.
Once the liver tissue is cirrhotic it is not reversible . However , the liver can still function even if it is 80% damaged. The kidneys do compensate for the lack of liver function and it should be investigated as all the vital organs are inter dependent and inter related. Best wishes bang on doors It is the squeaky wheel that gets greased .
Hi, I have childs B9 cirrhosis also from burnt out non alcoholic S.H, Have been told I have just got 'lucky genes'!! I have one gene for haemochromatosis which apparently can work with other issues to cause the problem.
The first docs did not pick this up.
I am now on the King's TP list & am working on staying as fit as possible. I am losing weight but now taking protein supplements & eating as much as possible. An evening snack is particularly important. It feels like a long road but many people on this site will tell you there really is light at the end of the tunnel....The trust website can give you a diet sheet.
Sorry to hear that.....it's an insidious disease . My relative went to a specialist years ago due to raised liver enzymes but was fobbed off and told "i've seen much worse LFTs ".....and now look where we are..It's good they checked your genes also, sounds like they did a thorough work up at Kings.
Yes she's been told to eat frequently..don't go without a snack for longer than 4 hours, eat bedtime snacks and even chocolate covered ones! She looks frail and thin but am told her optimum BMI is a few kg lower! Luckily no loss of appetite.
I have got her crackers and cheese she can munch on.
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