A bit of advise please. My husband has PBC and decompensated Liver disease. He is due tp assessment in Leeds in a couple of weeks. He is distended from ascities which he has drained every couple of weeks. Here's the problem he has no appetite and states that all food tastes either bland or 'odd'. Does anyone know why this is? Really concerned as It is becoming a challenge to meet his nutritional needs and he's got severe muscle wastage.
Anyone encountered this problem?
Good morning Robbie21,
Sorry to hear your husband is not feeling so well.
People often have less of an appetite when they have ascites due to the pressure of the excess fluid pressing around the abdominal cavity including stomach, giving a sense of fullness.
Often trying small, frequent meals can be helpful.
May I suggest you discuss the nutritional problems with a dietitian when he is in hospital having ascites drained or his GP ?
They may be able to prescribe nutritional supplement drinks ?
Food tasting 'bland or odd' may be a symptom of PBC related symptoms which can included dry mouth .
I have included information from the British Liver Trust site regarding PBC
britishlivertrust.org.uk/in...
Best wishes
Trust 9
Cannot really add to the Trusts excellent advice except to encourage you to ask for nutritional supplements for him which will at least provide him with all his vitamin, nutritional requirement s . I literally lived on Ensure supplements for over a year when I couldn,t eat, they saved my life!. They come in many flavours so you should find something he likes ( ensure is like a milk shake, then there are other products such as a fortified orange juice etc. ) If you,re with the NHS it,s free of course just ask the doctor. You can also ask to see a dietitian at your local surgery , ( think this was mentioned in other reply ) and I would encourage you to try this. I went on a short course with other patients who were in a similar situation, at the time I was going through Hep C treatment. (I had lost 3 stone in a few months as my liver " waged a war being fought within it " as one nurse cheerfully told me as I stood on her scales!. Well, please let us know how he is doing and look after " You" caring is tough on the carers. X
Thankfully Ed was accepted by Leeds. He goes live on the list today. Now the wait begins. What a terrifying time. But better than the alternative. At least there's light at the end of the tunnel. Very thankful for the chance.
Oh yippee 👍. That’s great news indeed. I remember at that time when they rang me to say yes - it was better than the man from del monte saying it - and if I had been able to dance a jig round and around the room I would have 👍.
Do you know I think it is far more “terrifying” for you as the carer than it is for the patient. I wasn’t terrified - not really - I couldn’t wait. I had had long enough of the waiting by then!
Really hope your husband gets the call soon. You watch it will be something like 0230 - it seems to be quite often the case - was for me both times. But did I care - no way Jose 😁😁👍👍.
Good luck to you both!! 🤞.
Miles
Thank you Miles. My husband is so chilled and full of positivity which is great. I tend to over think things, habit of a lifetime. Just so pleased that we have this opportunity. Couldn't have put it better- the man from Leeds say yes. Never wanted a 2.30am call before !!
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