Liver disease - pumps for ascites and lethargy

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Hello all. A close relative of mine has severe liver disease so he's going through regular drains, blood transfusions, no energy and so on. I wanted to ask you for more practical advice. His doctor has been incredible but she is now coming up against very negative consultants. They are indicating there is not much point to find out why he's losing blood internally, blood transfusions and consultants are negative about length of life at his stage. He is in his mid 70s and has been told no chance of a transplant. My second request for advice is about pumps, He has to make a decision about a pump (not many options open as we did our own research into it) or to attend hospital for drains. I want him to make an informed decision as he's very scared about the whole thing. I guess there are pros and cons and risks of infection but any experiences on this would be really helpful. Finally any advice on helping with severe lethargy? Any experiences of severe liver disease and maangement?

 

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  • Posted

    Well, at the grand old age of 48, I went into hospital with a bleed on the brain stroke, which would have been caused by hypertension and helped along with a large dose of alcohol.

    Whilst I was in, I went jaubdiced within a couple of days and had liver failure (it's a bad term that, because it doesn't actually mean it has failed, it means it is in a serious way). I was detoxed (I wasn't really awake to know what was going on then), had a catheter put on and had a lactulose enema. I also had ascites and had 10 litres drained.

    As for losing the blood internally, it is usually esophageal varices (bleeding). Have they done endoscopy on him? Does he have low blood pressure?

    Consultants won't want to get involved if they see it as a lost cause. They will look to spend their time on someone else, they don't want to be associated with a patient that they may feel is going to die on them.

    I take it he has stopped drinking and that they have done a blood analysis and he takes prescribed medicine and vitamins. 18 months later and I am leading a normal life (minus the alcohol) but I still take eight prescription meds a day.

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    • Posted

      Hello 

      Good to know you are leading a normal life. 

      He has low blood pressure and we are waiting for an endoscopy to be done but consultants seem to have the final word on these things. 

      He does not drink and has not touched a drop for over two years. 

      We need to decide about the risks associated with drains at hospital or a more permanent pump. I guess risk of infection is present in both but we just want the best for him. 

       

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    • Posted

      Although I was/am on amlopidine for high BP, when I was in hospital, they did what they called Obs (observations - temp, BP and pulse) every four hours and when I say every, I mean every four hours, 10:00pm, 2:00am. 6:00am and so forth.

      The nurse at the local alcohol rehab place, used to work in the hosiptal ward I was in - nice jump, gastroenterology ward to alcohol rehab. She said the reason that they do them through the night, is the esophageal varices can start bleeding at any time and this would show up by a big drop in blood pressure.

      Well, if they haven't done an endoscopy, no wonder they don't know where he is bleeding intenally, although I suspect they have a good idea. I'm afraid you are going to have to start pushing people and making a nuisance of yourself. 18 months through the system, first hospital I was in, second specialist hospital I went to and thirdly the stroke rehab hospital, has taught me not to leave it to doctors and hope they do the right thing.

       

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    • Posted

      We have been making a nuisance of ourselves all day and have a plan.

      I agree you have to push forward and do your own research.

      Sending good wishes x

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