Advanced liver disease. Update

Advanced liver disease update.

Hi all well we saw consultant on Friday and not seeing him now for 3 months! Weird as partner still so sick.

Want us to increase ensure drinks to 4 per day to address weight and muscle loss. If no improvement in 3 months then will go onto feeding tube via nose. At next appointment if weight increased then will refer for transplant longer if feeding tube needed. I'm feeling quite positive strangely.  Consultant did say some on list for 12 months and liver Shows sign of repair so need to transplant. Then added that's highly unlikely for my partner due to damage. Conflicting eh 

2 Replies

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  • Very conflicting, I would suggest you maybe get a second opinion...we did last September...cost £100 but well spent as the consultant then took over our sons care ..on the NHS.. and he is now on the priority transplant list...Try and see a Nutritionist at the Hospital and get some High Protein drinks. if he has muscle wastage and a weak grip as our son has then this will help a lot

    They have put our son on

    Prosource Jelly 1 per day...jelly desert

    Fortisip Compact protein 1 per day ..Bedtime drink

    Prosource Plus 1per day mix with water and drink

    Renapro 1 per day...a powder to mix with milk for serials

    These add up to 71g of protein per day and increasing some of his other daily food intake will lift his intake from an estimated  70g protein at the moment & lift it up to 156g per day

    Keep strong were all here with you

    Chris

  • Your partner as I understand it only stopped drinking alcohol in December so he is only yet 4 months abstinent - transplant teams generally require a minimum abstinence period of 6 months before consideration for transplant so at the present time your partner wouldn't be considered for asssessment/listing.  Waiting the further 3 months until the next consultation will take you above and beyond the 6 month dry period and then your partner will need to demonstrate his commitment to life long abstinence.

    Malnourishment is actually a contraindication to transplant too so if your partner can regain weight and muscle in the interim it will all stand him in good stead when it comes to transplant assessment and progress to transplant if that is found to be appropriate.  My hubby went from 8 1/2 stone to 11 stone on 4 ensure drinks a day though we were lucky he still maintains a good appetite too.

    People can indeed be listed and then show an improvement leading to no transplant - my hubby was assessed and listed June/July 2014 and after 10 months waiting for a transplant was deemed to be doing too well and was delisted in May 2015 so it does happen - even with advanced liver disease.

    I'll ping you a PM with some further advice that we were given regarding diet and maybe we can get him on the road to building some weight and muscle.

    All the best Katie xx

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