Hi everyone, hope you are all ok. Please, has anyone got any advice, however small, how to help our son, gain muscle mass. He wont make the transplant list, otherwise. His assessment this coming Monday is already on hold, hence, he's in hospital, with infection.
We are following the specialised diet as recommended, but hes so thin, too.
I'm beside myself with heart ache, any advice, most gratefully received.
Many thanks,
Annie
Hi Buttonmadnannna
The British Liver Trust cirrhosis information suggests that you may find having nourishing drinks a help. These can include homemade milkshakes or commercially-made products such as Build Up, Complan, Recovery and Nourishment.
However please do discuss this and any concerns you have with your son's doctor or dietician for their medical assessment, they have access to his complete medical notes and are best placed to advise.
Very best wishes.
Thank you, our son has already been placed on 750mls a day, fluid restriction, due to low sodium level, which I believe, has now stabilized. Due to the lock down, all wards are closed, so we cant even visit him, which is heart breaking all round. His consultant is again asking the dietitian to see him, but she hasn't been very helpful. She gave him, the same liver diet sheet, as before! I'm worried sick
Can quite understand your concern. You may find it useful to contact the British Liver Trust helpline for some advice:
helpline@britishlivertrust.org.uk or telephone 0800 652 7330(Mon-Fri 10am-3pm).
Best wishes.
I will ring this morning, thank you
He needs to see a dietician urgently to get dietary advice and as he's in hospital they should be providing necessary nutrition - I pm'd you two months back - take another wee look at that PM for the pre-transplant dietary guidance we received for malnourished patient.
We've had people on here before who had to go onto nasal gastric feeding to get enough nutrition into them before t/p assessment.
He should be on some sort of supplement now to add more calories and protein - my hubby was on the diet from hospital dietician from June 2013 but still got 4 x Ensure protein supplement drinks a day prescribed to him when he was undergoing transplant assessment a year later as he was still a little too thin.
Fortijuice, Fortisip and Ensure are the common supplement drinks which he could have on top of whatever food he is able to take.
I note you sent fruit to the hospital - at this stage that won't help him - he doesn't want to fill up on fruit or veg more protein and carbohydrates are key now.
"Fruit and vegetables
Fruit and vegetables are important for vitamins and minerals, but they are not a good source of carbohydrate or protein.
Fruit can be a good snack. Try to have a couple of portions of fruit, vegetables or salad every day. If your appetite, food intake and weight (without fluid) are normal, then aim for 5 portions a day.
If your appetite and food intake are poor or you need to gain weight or muscle, try not to fill yourself up on these foods or have them as snacks."
As he is in hospital there is probably little you can do to aid him with his diet just now unless you can drop off things like oat flap jack and lots of snacks.
Thoughts with you all, such a tough time to be going through this situation.
Katie xx
Thank you Katie,
Hes on 4 ensures a day, and ensure juices, I've just sent him in protein packed foods, too. Hes seen a nutritionist, but they need to be helping a bit more, than they are...I'll see if I can still find your original message.
Kindest regards as always,
Annie
Hi Annie. Can he manage to lift some light weights ... bicep curls, tricep extentions etc. As well as a high protien diet, weight bearing exercise will increase strength and muscle mass
Laura xx
Hi Laura, I'm sure he can when we get him back home. I've just sent him in resistance bands, for now. Also sent him in high protein foods, from lidl. I know he's ment to have 125g protein at least a day.
I will message him in a mo about the exercises you've said about.
Love as always,
Annie xxx
Hi,
I’m not a qualified PT but I am a bit of a fitness guru let’s say.
You’ll have to forgive me, but I’m not educated on the effects that chirrosis on building muscle mass. Is there anything that your son can’t eat/can’t do?
To most people, I would say to invest in a barbell and weights. Building muscle requires a combination of a couple thing and although everyone’s body is different, the basic fundamentals apply for everyone.
Heavy compound movements (bench press, squat, deadlift etc) enough calories to be in a surplus so that he can build muscle along with a high protein intake (approx 1 gram per lb of body weight)
Now I’m assuming due to his chirrosis he is limited to quite a lot of things so if you could break this down for me I’ll try my best to help
He cant drink coffee or banana shakes, but ok with everything else. Hes on ensure compact and ensure juices. I brought 2 x 1kg hand weights online yesterday, so just awaiting delivery.
He is limited due to ascites, hes at 10 stone atm, but a bit thin.
We are sending it protein foods, but it would really help, if a nutritionist was seeing him in hospital, as promised, grrr!!
He is being transferred to Addenbrookes by Monday.
Many thanks for your support,
Annie
Is he at a local Hospital now then Annie - not a Liver Transplant Hospital? When he gets to Addenbrookes (one of the big five as you probably know!) I hope you will see a marked improvement in the treatment he receives.
Good luck to you both 🤞🤞.
Miles
He is in Addenbrookes now. Has nasal gastric tube in for extra nutrition assessment starts on Monday
Annie - Oh that’s good news in the overall situation. 🤞🤞 it all goes well tomorrow.
Miles
Hi Miles,
Yes he is in our local hospital. Its absolutely heart breaking that we cant see him, neither can his 2 children. So many tears, but I know they're doing everything they can, to keep him well.
He's going over to Addenbrookes, by Monday. I've heard it's a fantastic hospital. Not sure what else they can do, apart from transplant?
I am so sorry I haven’t been back in touch. How is he doing? Did he get through week? Please let me know
David 🙂
Hi David,
Please don't be sorry.
He had a nasal gastric tube In, his bloods are showing concern but clotting is fine. Drs there are doing everything they can for him and allowed us to be involved, in their consultation with him, yesterday. He said this assessment is being rushed through, for obvious reasons. We are beyond broken and praying for a miracle
Hes in Addenbrookes now
Hi, it’s not a good time for you, I feel for you and your boy because I know the fear and how poorly he will be feeling at this time. He has come through a critical stage, that’s one good thing...and the gastric nasal tube, is that to feed him? I had one fitted up through my nose, boy they are uncomfortable. I kept it in for two weeks and pulled it out twice. First time the nurse got the knock because it was like two in the morning and I had to have an X-ray to see if I’d inflicted any damage...most nurses are wonderful but you do get some miserable cows:-). Think I came through it just to spite her. Second time they just left me and decided I was eating enough. They never told me in there but for the liver to be satisfied, because when it becomes decompensated it turns into a glutton, it needs 3,000 calories a day. At first it seems like an insurmountable obstacle and leave you depressed and without hope, but with knowledge you work around it, it can be done. Trouble is hospital will equate for about 1500 calories a day, so you need to somehow get the extra into the hospital and enjoyable enough for him to eat. Remember on top of that his salt is on 6grammes a day, there’s more in a teaspoon of garlic granules.....and his drinks must not nee more that 1.8-2 litres a day to help kidney function improve. If you break that tell him not to worry, but the salts the biggie...where you can, you must keep salt content down. Lots of chocolate bars, ice creams(they’ll have a freezer) and fortisip drinks(make sure they’re freezing when he gets them) all add extra calories and bring a wee bit of cheer to a somewhat horrible situation. Every day is a day clear of alcohol, maybe one little cell rejuvenating, ok it will never be better without a transplant, but the further down the road you can push that, the stronger and fitter he will be for the operation. As regards weight gain, don’t overdo it, especially with the ascites but try to get him to walk a little and improve on it. It helps the body cope with ascites better and obviously contributes to overall health.
He won’t feel like talking, but tell him there’s someone here that’s gone through exactly what he has...like I said, email on cammeag @ hotmail.com or he can what’s app or call me on 07882 256706. I am genuinely here 24/7 (as the disease destroyed my sleep cycle)so he can call anytime. I hope the team he has around him at Addenbrookes is top notch, loving and caring, and that day by day, no minute by minute he continues to improve.
Keep me updated please. You take care
David.
Hi David, just been chatting on video chat. Yes it's to give him extra nutrients, because despite 4 x daily ensure, keeping to the 'specialist' diet the so called nutritionist gave him in MK hospital, it has not been sufficient in protein. Hes having very different food, in Addenbrookes.
Hes done amazing with the salts, it's got a bit low, so they're also sorting that, out!
Hes having daily albumin, jaundice is a problem atm, that's worrying me sick, as no one is saying whether that's a very bad sign, or whether it's to be expected. I am very worried about it.
They are getting a drain in again today.
As this assessment has been rushed through, it speaks volumes, I know.
Wishing I could turn the clocks back and stopped him destroying himself, tho I know we did everything we could, this guilt is killing me!!
Well, i had better feed my 2 cats, before they go hunting in the neighbours pond (Cuddles really will, lol !!).
Look forward to chatting to you again, soon.
Once again, a million thanks
Annie x
We have much worse devastating news. Hes just tested positive for Covid-19. I'm absolutely broken x
Just read that. Only in hospital. You’d think there would zero exposure to patients like your son. It mystifies me. My thoughts are with you all this dark night, let’s hope the dawn breaks to some better news. Please take care, difficult i know, so sorry
Thank-you. I'm pretty sure I know how. He was in a side room in our local hospital, where he tested negative. He was then put onto the main ward. The following morning, our son heard 2 nurses discussing the positive result of a patient on that ward, where he was taken off. I'm absolutely broken!!x
Can I ask , do you have family with you right now as you really need a shoulder of strength at your side!- My fingers are still crossed along with my 🙏🙏 forbyou all!-
Trish x
I have hubby and our 2 grand children. Just have to soldier on x
Hi Annie, how is Kev today. How are you and your Hubble holding up. Is it Kevs two kids your looking after? Heartbreaking all round really. Have they restarted the waters tablets, or are the going to drain? Remember to try and get him to walk, just a little at a time trying to improve each day. Is he taking his fortisips...probably so worried he doesn’t want to eat especially with nasal drip!,! Take care, David
Hi Annie
My heart goes out to you being in a very similar situation myself. My husband was admitted to hospital recently with severe jaundice, bleeding oesophageal varices, chronic gastritis and was told he was in liver failure. He doesn't meet the criteria for a liver transplant and failed to respond to steroid treatment. He was in hospital for two weeks and they sent him home (a few patients on his ward had contracted COV-D). He was back in two weeks later for an ascitic drain and still not responding to treatment. At this point we were told rather bluntly (on the ward with other patients and visitors in ear shot) that he was now near the end of his life and there was nothing more they could do for him other than offer palliative care and as a parting shot, they also thought he might have cancer but the investigative procedure to find out was too risky and there would be nothing they could do to treat it anyway. At this point I had to leave the ward as my one hour visiting due to lock down was up, so he was left alone to digest the news.
After he left hospital we have since learned that when they did his CT scan they found inflammation on his lungs consistent with COV-D, they never mentioned this to us and if he did have it, he seems to have survived it. Against all the odds, while he is still very poorly and has a terminal prognosis, he has shown some improvement in his liver function, he also has type 1 diabetes which is an added complication as the insulin is no longer getting his levels down to a normal range which apparently is normal in liver failure.
You are doing everything you can for your boy and it is not easy trying to hold yourself together while all this is going on, the added stress of not being there for them at hospital is unbelievably hard for you, I know. Keep going Annie, it's sounds like they are doing everything they can for him and if he responding to treatment then this is a good sign.
Take care x
Hi, thank you for your kind reply. My heart goes out to you, also. Why doesn't your hubby meet the criteria for transplant? Is it due to the Diabetes?
Is your hubby still in hospital, or is he at home?
Our son is an in-patient atm having his transplant assessment in Addenbrookes. It's being rushed through, given his situation. But hes still jaundiced, Hes having platelets as they're putting a chest drain in, this afternoon. He's also having iv albumin.
He believed hed be coming back to us, on Friday but I heard a dr ask him, who said he would be coming home, on Friday?
I have been full of hope, but full of dread.
Annie xxx
Hi Annie, he doesn't meet the criteria because he is an alcoholic and despite giving up for almost a year and moving from a decompensated state of cirrhosis back to compensated and doing really well, unfortunately he fell off the wagon and started drinking again.
I'm sure many of the wives, husbands, mothers and children of alcoholics on this forum would know how difficult it is to live with someone who thinks they are OK even if they have been told about the dangers of continuing to drink once you have been given a diagnosis of ALD. You can't feel guilty about what they have done to themselves, we tried everything and he was offered all the help, AA, meds, support. It has to come from within themselves to want to deal with it, I know my husband has really struggled with it and we love him dearly but I can't say it's not been hard to watch someone you love destroy their own future. And god yes, he feels really guilty and full of remorse but also accepts that we are where we are and we can't change what's past. We just have to enjoy what time we have left together and like I said, remarkably he has started to see some improvement in his liver function, so who knows, we may have more time than we originally anticipated.
I'm glad your boy is having an assessment for a transplant, I'm keeping my fingers crossed for you that you have him home soon x
Decompensated to Compensated
Some advice please
Decompensated to compensated? 
Decompensated to compensated
Advice wanted please.
