I'm wondering if people had much success with the feeding tube and how thin they were my dad is really ill with end stage liver disease a specialist team have suggested they will review him for a transplant if his nutrition and weight can improve. The hospital tried the ng 4 times but at that stage he was really confused and not in the same planet so pulled it put 4 times. His normal hospital are saying no chance for a transplant as he won't be built up but the specialist unit still have him down to see them. However the hospital have said end of life care against my dads wishes.
I'm going to have to take him private cause I'm really struggling and worried I'm not doing right by him, but I'm wondering how bad it got for people and if the ng tube helped.
This was him and me at my wedding and he has lost weight since then 4 weeks ago. But It gives you an idea.
I'm trying to understand if I am being unfair to dad to keep pushing with limited chance although he wants to fight.
Please help a very anxious and stressed daughter. X
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Potter1980
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Hiya hunni don't give up this time time last year I was losing weight and was extremely thin and had been in hospital for around 5 weeks over the time I was in they constantly kept telling me they wanted to put a feeding tube in I refused time after time. I was drinking fortisip drinks Is your dad on them? Also milk full fat I couldn't face eating but I am sure you know what to try if your dad the same. You will have to take the fight on I was quite lucky with my consultant in my local hospital she didn't give up on me with the transplant hospital. I am sorry I can't be more help I just wanted to give you some hope... I had my transplant nearly a year ago now x
I'm so sorry that you and your dad find yourselves in this situation. Perhaps I can help by telling you about my own experience.
Due to alcohol related end stage liver disease I was extremely ill and would certainly not be here if I had not been fortunate enough to have a very successful liver transplant. Among all the other problems was the confusion that comes with hepatic encephalopathy and a poor nutritional status.
The transplant team had their own dietician on the team and she was brilliant. She did talk about a naso-gatric tube,but at home and not at hospital. As it happens, as my hepatic encephalopathy became more controlled and from that point, my nutritional status improved enough for me to complete the assessment period without any problems.
As you can see from my story and also from jojoKarak's reply. There is a way forward and hopefully your dad will get over this nutrition stumbling block and recover from his illness.
Maybe he would be more settled and more accepting of the tube if he was at home and surrounded by those he trusts. Nurses are good at what they do, but they are strangers and don't always have the time to supervise somebody on enteral nutrition. Supported by the district nursing team, there are many people at home with on enteral feeding. Maybe this is something you could discuss with his consultant or GP.
I would also recommend that you could contact the British Liver Trust Help-line. There you would be able to get advice from a registered nurse who is able to give up to date and authoritative advice.
OK thank you. He has regular ascites too so i think it's quite advanced. My battle is the hospital are saying no treatment at all and I have to get over that hurdle he's being treated pretty shit.. No coordination between hospital and dietians even though they know he's got to be strong to be even considered for the transplant list and no discussion with the transplant people who have basically said if his nutrition improves they will see him again to review. He is extremely thin though.. Hospital have him on palliative care and have cancelled his appointment with transplant team dispite that not being what dad wants..
You need to speak to a Patient Advocate at the hospital. I had to do that as I wasn't being told anything in LAYMEN'S terms..so after they intervened things changed a lot!!
in reply to
I'm sorry I forgot your dad passed on. I wish I could take that back.
I also say do not give up. Your dad also doesn't want to give up. Do whatever it takes to try and get a 2nd opinion. Private treatment if you can too . Ask for urgent discussion with his specialist too. Maybe nutrition drinks might help a little? Keep fighting. Sending warmest wishes. Xxx
I will I'm at the hospital I'm the morning hoping to get to speak to the consultant as he is currently in to be drained but if anything is needed medically they said they won't intervene as he is on end of life care..
Don't give up keep asking the consultants and ask to see the dietician today and refuse to leave without seeing her because your dad needs you to fight for him. He is very lucky to have a daughter like you. Don't give up take care sending lots of love. X
So today went well I think i have asked the consultant and I think I have a clearer head as to what is going on. They don't feel the feeding tube will work as it's about absorbing the protein and they think that dads liver disease is that far. But they have suggested a tap thing in his stomach which is a palliative care basically so it will mean he will be more confortable and won't be stuck in hospital waiting to be drained.
The consultant explained it all to dad and he was happy he did ask if he could try and build himself up with the feeding tube and the consultant has said he can try it again if he wants but wasn't sure it would work. Dad has said he wants to try and so tomorrow that's what is happening. If it doesn't work he will be home and we have the other procedure so I feel much better and have faith I've asked all I can and made sure that dad has had chance to get his point across.
There are so many if buts and maybes with liver disease and regrets if only stopping drinking had happened sooner, but whatever the outcome I wil always be proud that my dad took the battle on to the end and that's all you can ask.
Well done Potter it must be so hard and your wedding photo is lovely by the way.. I drank so many protein shakes in hossie I ended up still buying them on getting out.. I almost missed them! I didn't have a feed tube although they threatened it enough times my appetite was zilch and somehow proteins tasted the worst especially chicken, no idea why!
Sending special thoughts to you all and I hope your dad rallies through, he clearly wants to..
Well todays a bad da y he still hasn't been drained and is very confused today. They are holding out cause his potassium levels are high which is an indication kidneys arnt doing to well. One step forward two back it's a nightmare. There's no way he will tolerate a feeding tube as he's not with it..but each day as it comes. That's all you can hope for.
You are a wonderful, caring daughter, your wedding photo looks great, hope you had a lovely day. Keep fighting, you are doing great, you have done everything you possibly can for your very special Dad. Keep fighting, I know it's hard. Please take care of yourself too. Lots of love Lynne xxxx
Hi, I know exactly how you are feeling. Unfortunately my Dad passed away last July due to end stage liver disease. We had 6 months of hospilisation with complications daily. At the time we felt the Doctor's were messing us around, they were talking transplant, then no go, then transplant and back to no go, this is excruciating to the family when you are having to deal with all the stress that comes with this illness. Sending you love, one day at a time is all you can do x
I'm sorry to hear your dad passed on. I know its late and you may not be part of the forum but I'm still trying to figure out this awful disease. Can you tell me how he progressed to the feeding tube and what happened after? If its too painful I understand. Thank you and God bless!
What is the ng tube? All weve been through the many strugglles to help my husband fight. Weve come to accept the inevitable and stop all treatment only pain meds. There were times we'd have energy to fight but each time was harder after the pain and suffering came back. Listen to your heart about what you should do..God
This is an old post and sadly the gentleman concerned did eventually loose his fight. A NG tube refers to Nasal Gastric feeding where they put a tube up your nose, directly into your tummy and feed through a pump device.
Sorry to hear how your hubby is still struggling on and you with it.
Hi, I am so sorry for your loss. I've learned about it as it perfectly reflects my own scena. My dad was becoming increasingly slow to respond, increasingly slow & I repeatedly asked his gp for help until I got to the stage where I thought "screw this" & rang 999. He was admitted again & declined beyond belief, he thought I was the mother of his twins but he'd given birth to them. After a couple of weeks, I noticed he had terrible tremors which I was later a told was down to his potassium levels. The day after his catheter bag was so dark I knew his kidneys had stopped working. He died a couple of days later & I'm so traumatised by the whole event. I'm now left asking if we should have asked for them to fit a peg or something.....I feel like he went in with a chance of recovery & now I'm left with a boat load of questions. X
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