Feeling helpless

[Charlieathome]

My son was diagnosed with decompensated liver disease last November due to his intake of alcohol over the years. He is now fifty and struggling, the hospital are brilliant with him seeing him every two weeks.He is booked to have his stomach drained in two weeks this will be the second time.. I try to get him to eat the right things take his protein drinks etc.. but when he has bad days he cannot eat for feeling sick..I just do not know what to do.. I must say I am feeling slight relief after actually writing and sharing this situation we find our selves in...the outlook I believe is not good...a very worried Mom.

[AyrshireK]

Welcome to the forum Charlieathome.

Sorry to hear how poorly your son is. I guess the obvious question is "Is he still drinking?" a lot of what the future holds depends on what the situation is there.

Obviously if he were sober and decompensated then there is the possibility of going forward for transplant assessment and possible transplant but if he's continued to drink despite his diagnosis then that would rule out that as an option for further treatment.

Katie

[Charlieathome in reply to AyrshireK]

Hello KatieThank you for your reply,I really do appreciate it. I can confirm he is not drinking and as yet no urge to do so...he always thought he would be ok despite my warnings of what would happen. It was a real shock for him when he realised obviously out of drink and ill how ill he really is.

[AyrshireK in reply to Charlieathome]

When you say November last year do you mean 2022? So he's not long sober. If he gets to 3 month sober with no sign of improvement the he (and you if you are supporting him at appointments) should start pushing for referral to transplant unit. Since 2021 procedures for assessing folks with ARLD has changed.

[Charlieathome in reply to AyrshireK]

Thank you for your reply, yes 2022 is when he stopped well had to because he collapsed, he was abroad..his body was obviously telling him enough is enough. I will look to see if there is info for the assessment for ARLD, he has a specialist appointment booked on 16th Feb. Thank you again.

[AyrshireK in reply to Charlieathome]

It might still be early days for transplant but worth asking the question since the criteria changed from the earlier mandatory 6 months sober to now sober and engaging in alcohol support (that will be important). You'll find the new guidance regarding assessment at :- basl.org.uk/uploads/LAG%20A...

As regards his eating - little and often is key (and very low levels of salt) a good source of protein plus carbs. When you go to his next appointment seek referral to a liver specialist dietician. He needs to eat something or he'll totally waste away and he won't get rid of the ascites.

Katie

[Charlieathome in reply to AyrshireK]

Katie, A great big thankyou.

[Charlie15melissaabb]

I have decompensated liver l have had the same things happen to me eating is a big problem with me it’s all because you feel bloated all the time because of Ascites Ihad two drains and took the medicine they gave me and would still come back but one day I got out of bed and could not get off the toilet with out Ascites the eating will improve don’t worry hopefully he will get better soon

[Charlieathome in reply to Charlie15melissaabb]

I live in hope.

Thank you.

[Readlots]

Hi Charlie, I’m sorry to hear how poorly your son is and how worried you are. My Mum ate less the more fluid built up so hopefully once he’s drained he’ll be able to eat a little more. With Mum little and often was the key and trying to give her what she fancied, which could be quite random. Half a chocolate eclair seemed to slip down quite easily! We got a referral to the dietician who called every couple of weeks and was helpful. We also tried different liquid meals to find flavours she liked. Hi calorie, low salt was what we were advised. If you’re a “feeder” like me it’s hard to see food rejected, it’s like a rejection of your love. Know that it isn’t. Prepare yourself for lots of cooking with little return, but know that you’re doing the best you can. Another tip - get a stick blender! Think baby food with lots of hearts and spices. Creamy parsnips with nutmeg. Cheesy mashed potato. But tiny tiny amounts - a big plateful can be overwhelming.

[Charlieathome in reply to Readlots]

Thank you so much for y our reply, I really do appreciate your time and useful information. Yes I am a feeder and recognise that feeling of rejection, I have to change as well as my son..yes I am hoping after the drain it will improve for him for a time...untill then will do my best to keep him going...

Thank you again..it is good to know others are out there going thru the same terrible time..my heart goes out to you all.

Best wishes..

[Charlieathome in reply to Readlots]

Sorry reading back that last sentence does not read well.. saying its good too know others are going thru it...I think I should have said I dont feel as tho I am on my own now...

[Readlots in reply to Charlieathome]

Don’t worry, I know what you mean. I’m through it and out the other side now but I do remember how isolating it was. It’s only other people who are going through it / have been through it that really get it. Hang in there, and look at other peoples stories on here. There are people who were in your son’s position who are now thriving x

[Charlieathome in reply to Readlots]

Many thanks for your reply, yes we are definitely going to hang on in there. Its a long road,I will do all I can to help keep him on it...

[BritishLiverTrust5 Moderator British Liver Trust]

Dear Charlieathome

Here are the links to information about cirrhosis on our website, which you may find useful

britishlivertrust.org.uk/in... (including a suite of publications towards the bottom that are downloadable or can be posted)

britishlivertrust.org.uk/in...

If you are in the UK and would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust

[Charlieathome in reply to BritishLiverTrust5]

Thank you for the information, I am sure it will be a great help.

[redpoint72]

Morning love.Things can and do improve. I was very similar to your son 4 years ago, just a few years younger. I had to have several drains. I felt so uncomfortable, didn't want to eat anything, having terrible trouble breathing, and not as mobile. It was a sad situation really,I understand how he must be feeling, ideally do. But slowly and it was slowly, I got some appetite back. Have you been put in touch with a dietician?. It sounds as though your son is on some protein shakes, I was put on ensure plus. Little ànd often is the way as other folk have mentioned.

I was told that my outlook was not good,but all alcohol was stopped 4 years ago, and stayed stoped.

If he can continue with his abstinence, then things can really improve, but its a long road I won't lie....

Please try,and not to worry to much.....but I realise your a very concerned mother,so you will worry.

I hope he improves love.

My best. Chris

[Charlieathome in reply to redpoint72]

Hello Chris, Thank you so much for your time in replying, I am finding this very helpful to me to remember the tips and advice and put them into practice and continue with what works..Yes he has seen a dietician who prescribed the protein and fruit drinks...he seems to wanting drinks with a sharpish taste.. hes very thirsty. He has not got into small and often as yet but I am working on that with him but he has to do it his way.. which is hard to watch...

Thank you again

Best wishes..Jackie

[redpoint72 in reply to Charlieathome]

Your welcome love. Yes,maybe he wants something with a more refreshing taste. Some folk find the shakes a bit sickly, but I was ok with them, as long as they were cold. Hopefully his appetite will improve,the liver dietician said to me a little of what you fancy...as I had lost so much muscle. Well as for doing it his way😆,we are as we are love ......the most important thing for your son is to steer clear of alcohol....This blt forum has some really good folk on it and from all different perspectives.

If you have any more detailed questions, you could contact the blt nurses. I have ,before now, they were great at putting my mind at ease.

Take care love. Chris

[Mango5cm]

So sorry to hear about your son - I’m in a similar situation and there is hope . My son was diagnosed with decompensated cirrhosis and acute kidney damage in October 2021 when he was 61 . It was caused by over 40 years of steady drinking - not binge drinking - he just enjoyed a drink especially when he came home from work - usually wine .

He stopped drinking immediately as he wasn’t dependant upon it . Over the last year he lost about 5 stone - couldn’t eat or get out of bed - he was rushed into hospital several times for blood transfusions , tests , treatment and he was told he had 1 to 2 years to live .

Now he is still ill - but he enjoys his food , gets out of bed and we even managed to have Christmas dinner and go out for a meal .

He still has ascities and goes to a hospice once a week to be drained .

How has he improved / well he’s done everything the doctors told him to do , he stopped drinking , he’s become more positive.

I’m 78 and it’s been hard going through this so I can empathise with you - I insisted he had fortnightly blood tests and I monitor the results ,I rang consultants secretaries and pushed for appointments I wrote letters to his GP and got him PIP and unemployment benefits - and generally kept on at people to get him the treatment he needed .

At the moment you must be feeling overwhelmed by it all and desperately worried and wondering how you can help . I made myself ill worrying about my son so please look after yourself . I know the worry doesn’t go away but there is hope that your sons health will slowly improve . My thought are with you and your son sending a big virtual hug . Hope you have some family and friends you can talk to and meet up for a coffee . Sending love and hope Carol xx

[Charlieathome in reply to Mango5cm]

Carol, bless you. Thank you for taking time to reply..our journey has just started...the hospital see him every two weeks for weight and blood tests..he is due a second drain in two weeks..a specialist app 16th Feb.. he is in a bad way at the moment all swollen and yellow which is the jaundice which does improve at times. They offered at his appointment yesterday to do the drain then but he said he would wait a while..when he told me you can imagine I was about to explode, we talked it thru and he rang to book this appointment. When you say about being positive he is yet to get there he cannot see the point of anything at the moment feeling so ill. It is no good me pushing him as he will just shut down it is a fine line we tread...I am hopeful and especially after reading your message and everyone else who has replied. I don't like to trouble anyone I am finding this forum a great help and the information offered on the site I am slowly working my way thru it...

Your virtual hug was just what was needed..I send one in return.

Take care of yourself too...Jackie

[Mango5cm]

hi Jackie - thanks for your hug as well - I needed one ! It took my son well over a year to even think there was life ahead for him . He wouldn’t speak to us , lay in bed and hid under the covers or just closed his eyes and ignored us ( me and his wife ) he had no solid food for about 9 month and was prescribed Fortisip protein drinks - his wife would just leave a drink by his bed - some days he drank them sometimes he didn’t . Sometimes he would get angry and shout at us or throw things but we just tried to stay calm and think how we would feel in that situation . I know how hard it is but try and find something each day that makes you smile a little bit even though you’re screaming inside and the awful thoughts don’t really go away .

Everyone on this forum are here to listen and help - they’ve helped me so much . Keep in touch - I found it helped to write things down and post them . Lots of love Carol xxx

[Roy1955]

You called yourself Mom so I am guessing your in USA.Plenty of others that post here are as well.

Keep in mind though that some of the medical procedures and criteria for transplant etc differ from UK ones.

He is early into his sobriety and with average luck can improve his health a lot over the coming months, it's a slow process.

[Charlieathome in reply to Roy1955]

Hello, thank you for your reply. I am actually here in England living in the south west.

[JimmyMartin in reply to Charlieathome]

us too!

[JimmyMartin]

how r u?

I’m sure yr doing yr best 😘

My Brother has the same diagnosis, still drinking & doesn’t want help.

Cruel disease X

[Charlieathome in reply to JimmyMartin]

Hi, We had a good day today. He was a lot more upbeat.. so I am calmer this evening. I am sorry to hear about your brother, and I agree it is a very cruel disease. I only found this forum a couple of days ago, and I am finding it a great help.Thank you so much for taking time to write. I really do appreciate it..Jackie