MUM WITH ESLD

[Toffegirl]

hope everyone is ok. I have a question, has anyone on here with liver disease seen or spoke to a dietitian??

[AyrshireK]

Yes - my hubby saw one on his first visit to transplant clinic - we'd pushed to see a dietician locally but consultant never got us to see one. By the time we got to Edinburgh a year after hubbies diagnosis he was deemed malnourished and had suffered significant muscle wastage. Dietician put him on an eating plan and prescribed supplements too.

Katie

[BetulaT]

Hi there! When my husband was discharged from hospital (he was hospitalised for emergency alcohol detox with liver failure this summer) he was given a small leaflet - a general guide what to eat and what to avoid. He was also prescribed protein supplement. Months later he had a telephone appointment with a dietician but by that time we've made research and educated ourselves, so I wish the appointment was much earlier!You should definitely push for appointment with a dietitian x

[Tia2021]

Yes I have, it was really helpful as now developed Coeliac, My GP does not believe in the supplements so if needed I have a prescription from the hospital, my GP says people become too reliant on them all I could say to him was really !!!, Maybe if you contact the Liver Nurse as I did she emailed the Consultant and I had a telephone appointment with the dietician, hope this helps, take care xx

[Zukosmile07]

The dietitian I have is fantastic. I was looking like a skeleton with a belly. When I told the dietitian what I had been advised and was sticking to, (From the so called leaflet, As batula mentioned) she said "Dan you are going too far, you need protein and a little salt". So then arranged a diet plan, protein with every meal, drink kcal supplement drinks (prescribed like Tia) put a little weight on even though you don't feel like it. The liver will steal your muscle mass and use it to keep going. (Clever and not so clever at the same time) your heart is one big muscle and your lungs need muscles to operate. Push to see a dietitian, I started to regain mine within 2 weeks.All the best Danny x

[Ubwa in reply to Zukosmile07]

Yes and pretty much this ^

Protein is very important and it can be tough to get the levels needed through food alone so ask for supplements. Ask for renapro, they may baulk (it’s not cheap) but it’s mostly protein and a few carbs. They usually prescribe fortisips which are full of sugar and fat too so not ideal unless you can’t eat to get your portions of carbs and fat.

[Toffegirl]

Thank you so much for your replies. We went to leeds hospital to discuss TIPS they said she has slight HE so declined, the transplant is our only option. She asked if we had seen a dietitian, we haven’t. She said we definitely needed one as mum is skin and bone. Basically has to eat 3 times more then she currently is. Me and dad did not know this, we just thought she was eating well. 3 meals a day and fruit. Consultant mentioned a bedtime snack (I started laughing thinking it was a little joke) then she told me, she needs to snack before bed. She has advised us that if she can build herself up, walk into clinic (as so weak she needs a chair) they will refer for a transplant. I am in tears writing this as she is currently in hospital, she is not eating and is too weak to walk. Everything she eat comes straight through her. Basically I feel she has been neglected and the only option we have has been took away, if we had a dietitian we would be in a totally different position because me and dad would have had more understanding on what she needs to eat.

[Aotea2012 in reply to Toffegirl]

I’m so sorry to read this. Please don’t beat yourself up. A diet for liver disease is specialist so why would you know that it needs to be a bit different if you haven’t been told? I have a dietician, but only after being admitted to hospital with a deep rooted infection where they also diagnosed liver disease. I have cirrhosis. I’ve had to change my diet to compensate for this and it took ages for me to get my appetite back. Whilst in hospital, they were almost force feeding me...hospital food isn’t that great! I now eat a high protein, high calorie diet. I drink a lot of milk, eat a lot of turkey, chicken, fish and plant based protein like chickpeas, quinoa, and red kidney beans. I’ve learnt how to make these really tasty, so it’s a nice diet. I snack often and eat a couple of slices of fruit loaf with butter before going to bed with a glass of milk. The body can’t store glycogen with liver disease so fasting over night is a problem. So that’s the reason why a snack before bed is important. Before she is discharged ask to speak to a dietician, they’ll give you some diet sheets and then you’ll be able to make her diet nourishing for her needs. They won’t do a huge amount more than that other than prescribe dietary supplements whilst she gets her appetite back, but they will be able to advise you on some quick wins to get her strength back. If I tell you that I couldn’t walk when I was discharged from hospital in April and that I run a couple of miles a day now, I hope that it gives you some hope that with the right treatment and diet your mum will improve.

[Toffegirl in reply to Aotea2012]

Thank you xx whether she has spoken to one while she has been in hospital I don’t know. Majority of the time she is in hospital she doesn’t have the mental capacity to make decisions. But me and dad have not spoken to one. She is literally skin and bone, no muscle mass at all. Her legs are so swollen with fluid so other then no muscle with that it’s difficult. I don’t know, Just so upset. I just don’t think we can turn this around in a month. And I have been so positive about everything for 18 months where as now we’re just all deflated xx

[Aotea2012 in reply to Toffegirl]

It’s really upsetting. I know my family were distraught when they visited me in hospital. My cousin even walked passed my bed because she didn’t recognise me! I had no idea I was so ill, and in some ways that was a good thing. I had wasted muscles, fluid build up, was a shade of yellow and couldn’t walk. I was confused and couldn’t even dress myself. I did recover though, and I know now that my family were not sure I would. They obviously didn’t tell me that at the time! I just did what I’d been told in hospital and eventually I started to recover. She’s in the best place right now. See if you can book some time with the consultant for you and your dad to talk through things and get a better understanding of what’s going on. Take care of yourself.

[Desperate-daughter]

Take care and hope things improve with your mum

[Hidden]

Hi Toffegirl, the others are right - your mum should have access to a dietician. I would suggest double checking with the nursing staff to make sure she has either been seen or is on the list to be seen whilst she is an inpatient. Your mum should also have access to a dietician upon discharge. I'll attach our Patient Charter which states your mum's right to care as a patient with a liver condition which you may find helpful

britishlivertrust.org.uk/li...

Take care,

Trust10.

[Lam1e]

For me seeing a dietitian was a key part of me gaining weight and get fit enough for transplant.

I also had to be tube fed post Transplant, nothing to do with the operation but an unusual side effect, and they were amazing👍

They can make such a difference 👍

[Toffegirl]

Thank you for all your comments. I have read so much about this disease can’t believe that I’ve missed the diet part. X