British Liver Trust
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Cirrhosis of the liver

Cirrhosis of the liver

I am back regarding my daughter Lisa (this is Lee19). She had one drain and lost 30 pounds. Her doctor said she is a B- on a scale of A, B, C. This means C means a liver transplant. Since her last visit she has lost all of her muscle tissue and looks like a skeleton with a large belly. The water has increased even though she takes two different water pills. She eats very little but stays with recommended foods and can only sleep for four hours at a time because of the discomfort in her belly area. I am sick with concern and feel she is slowly dieting. She has another appointment mid November...should I consider another gastroenterologist if he doesn’t come up with a better plan? She has not had a drop of alcohol since she was diagnosed with this liver condition and has no friends since she lost her job three years ago. So she is alone except for me making trips to see her. I don’t want to lose her and I don’t know what to do. Has anyone been in this place and found answers? I am desperate. My daughter below.

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I'm bit new on here all I can say is she done well to stop alchole and my early cirrhosis is getting bit worse after nearly 3yrs no drink all I can say is keep checking on here and I'm thinking of you both .someone on here will give u better guidance I'm sure.

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Thank you for your reply. I am trying to move in with her but I’m 78 and don’t drive if she has a bleeding problem. I also have to sell my place. I just want to leave everything and be with her.

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Hi

You need to be seeing a hepatologist rather than a gastroenterologist.

They only deal with liver

Gastroenterologist deals with various conditions rather than specialise in the liver.

What part of the country are you in?

Try to find your nearest liver transplant unit and get a referral there.

Good luck

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Hi lee , sorry to hear about your lovely daugter . First off she has done fab in staying off the demon drink . I was in a similar position myself 9 yrs ago .in hospital for 6 weeks and had 3 drains done .loads of scans and endoscopy.

You need to get her under the care of a hepatologist ( liver consultant ) they are the ones qualified more so than gastroenterologist.

I could never sleep due to the water retention . I never ate either .i was 6 stone after i was discarged . Im.now under care of liver specialist .

I hope you can get her the right care .. sending best wishes .

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Hi so sorry sbout your daughter

when my liver failed all my pain was in my belly

I took buscapan it relieved all the pain

I was allowed to tame in Kings when I was waiting for my transplant

couldn't of got through with out it

hope this helps

xx

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Hi Lee

Everyone is right she needs a referral to a liver doctor. I will ask though is the gastro clinic where the hepatologist based in her hospital? He is in mine. We don't have a big specialist liver unit at our hospital. They have different gastro specialists within it. I see the hepatologist . This means it is really important to find out her specialist's title. If he is not the liver specialist she needs a referral to one. If he is the specialist she needs him to give her answers. If it is like my specialist she will get letters about a month after her visit explaining in very basic information what they have found. That will give his or her consultants title.

Best of luck

Gx

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Lee1919 is in the USA so systems of referral for transplant differ from over here in the UK plus there are the restrictions of what insurance companies will pay for and when. If anyone has any experience with the American system it might help Lee1919 & her mum a bit better.

Katie

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It has been 6 years that i was in hospital the first time for 4 months the same as your daughter , I had liver and kidney failure dueto cirrhosis, big belly constantly needed draining came out of hospital with muscle wastage etc second time i was in was with malnutrition down to 6 1/2 stone (now tube fed). Your daughter has done so well, and with the correct care as the other posts advised she should improve. Like so many others on this site it a long journey. I feel for you as a parent and that you are getting some support, what a loving parent you are. I have now got a relatively good life, but this was lots of therapy, great hospital team, there is hope and I hope you both hang on to that, all the other posts have good advice. Good luck my friend and I hope your daughter, makes a good recovery.

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Find another gastro doctor because they waited to long for my husband before they referred him and I lost him last December and she is on a downward motion now i wish all the luck and I will keep you in my prayers

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Need to see heptaologist

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Hi, please get a referral. I myself have started to get similar symptoms after several months , I’ve stuck to the same diet , medication and no alcohol and my belly started to swell again , weight dropping. There may be another underlying factor and so I have an appointment with a specialist. Do not wait any longer, better to be over cautious then wait

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Hi Lee

How are things going now?

Gx

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