Dad diagnosed with End stage liver cirrhosis - help?

Hi all, good afternoon :)

I have joined today and thought I would introduce my self and tell you a bit about why I am here. A little bit about me - I am 27 and married with my own home and have a dog, parrot, 6 bunnies and a stray cat in my shed!! (As well a 40 odd chickens at my husbands allotment!!) I'm really friendly, love meeting new people and work at a school as a PSA, Learning Mentor and Attendance Officer.

My dad has ESLC and I have recently had to voice my displeasure with the consultant at the hospital we attend to find out what support is available to my mother, father and family as we have been basically told my dad is going to die and left to get on with it.

I have spent a few days now trying to find some forums for help and discussion that would benefit not only my knowledge on this horrific illness but also provide a bit of comfort to my mother so that she is able to speak to others in the same boat.

My dads cirrhosis has been caused by hospital negligence from keeping him on methotrexate tablets for severe psoriasis when they were meant to have discharged him. So now we have gone through all avenues to see what the options are but unfortunately he is ineligible for transplant as they do not expect him to survive the operation (he is 67) and also feel that if he did survive it, it would dramatically affect his quality of life. He developed ascites from July 2013 but was only drained for the first time in February last year. Up until July this was every 3/4 week but then from July to the end of October was every week and a half. At the most they took 21 litres from him. He doesn't appear to have ascites anymore and hasn't been drained since the end of October. When we saw the consultant at the end of last month she said she didn't believe there to be fluid on his stomach but his stomach has started swelling again. This leads me to my next bit - at the same appointment the consultant said that she was going to request that no more liver scans would be offered to my dad as they could show liver cancer and if so there is nothing they can do so it seems pointless. I feel like there is something they are not telling us, like he may have it already? I know that swollen stomach is a symptom.

The same consultant requested that we come back for our next appointment in 6 month...initially they wanted to discharge him and refer him back to our local hospital but I refused and said I wasn't happy about that as they were the ones who had put him in this position in the first place. The consultant agreed to keep him where is but would only offer 3 monthly appointments. (My argument was in 6 months time - given their diagnosis - he would either be dead or on his way out so what good is that??)

I feel like they are not bothered now there is nothing they can do and they have thrown us to sea without a life jacket. It has been so hard to try and get some support and also find it ourselves.

I moved out from my parents last July (only up the road) but as I work full time I help when I can so my dad's care is solely down to my mum. On good days this is manageable on bad days I can see her struggle, she comes to mine every so often in tears out of the way and I did take her on a spa day last week to give her a break. My dad does have HE now and this is proving tiring. Not only does he get confused etc but he is angry with the world and everybody in it and I have requested that he is given some sort of psychological support to help him to process the fact he is not going to get better. When I requested support at the hospital we were informed that Macmillan nurses are available to us which was a surprise as I assumed they were only involved for patients with cancer. Anyway we have a meeting with my dad's GP next Tuesday to discuss the Macmillan support and psychological help.

I'm not really sure what I want from the forum, I think probably stories of your own personal experiences would be good. We don't expect my dad to be here in 6 months time and I just wondered how bad things are going to get. For me as I am holding every body else up I think it would be just nice to speak to others and gain strength from your stories and chat really.

My dad is a huge well know character in our town and communities we are attached to and has been the epi-centre of our family, and most importantly my mums life for a very long time (he has done everything for her). As he has gotten seriously ill I find myself taking on this 'epi-centre' role and holding every body else together. This isn't something I have a problem with, I am a very strong positive person but I also feel it worth mentioning that I have health issues of my own (Fibromyalgia if any of you have heard of it).

My primary concern is my mum's welfare as she has no outside family as they all cut ties with her when my mum and dad married (there is a 20 year age gap, they have now been married 28 years this year).

So the family she has is myself, my 2 brothers and our partners. We are very close and I know we will be enough but as we all work full time and she is retired I worry for her.

I am trying to speak honestly with my mum and try to prepare her for when the time comes as it is going to hit her hard.

I think you have read enough of my ramblings on, I maybe had a bit of a moan in there too but it feels good to write it down and put it out there to others who may be able to support us.

Hope you all had a wonderful Easter

Natalie xx

13 Replies

  • Hi, I'm sure that you will find the folk on here a well informed friendly and ready to chat should you need it. So welcome to the site . Take care.

  • Dear Natalie,

    This is an awful situation you are in. Is your hospital a liver centre? If not - then you need to have your dad referred to one. Most local hospitals have Specialists coming from liver centres to work almost like outreach. You must then go and see your GP to ask for a 2nd opinion - which you have a right to do - it may be worthwhile taking a name of your nearest liver centre so that the GP won't have to search for one. Once referred - ring the centre up yourself and mention the referral but also how ill your father is - this may make them offer an appointment sooner. Do ask the GP to do this urgently. Listening to the way the Consultant is behaving you may find it more difficult trying to get a referral from them. You could speak to the PALS officer in the hospital and raise it as a complaint - this may help you to get referred to a specialist centre.

    If you are already in an liver centre hospital - then go and see the PALS officer there - they will act in your best interest as they should be the first port of call.

    I do hope things get better for you...


  • Natalie,

    Welcome to the site, there is a mine of useful info on here from people who have / are experiencing similar issues to yours.

    I had a liver transplant in Nov 14, in Oct14 I was in quite a bad way, I also was suffering H. Encephalopathy quite extremley, (irratable, angry, no inhibitions, a real pain to be with etc. on occasions,) and I found very little help or experienced advice for H.E. my GP was unaware and thus unsympathetic or helpful etc. I found consultants in medium sized local hospital exceedingly unhelpful, we made progress by going private for one appointment to get diagnosed!! (PBC) but what ever the route to end stage liver the result is the same. my advice in a nutshell, if you can afford one private assessment it may proove useful, get (demand) second opinion, air individual issues on here to get suggestions, lock onto sites like there must be others, do not fall into the trap where you accept what consultants and GPs offer, demand more!

    I am 62 - I do not know of your fathers general health (I am fortunatley quite fit (if you exclude the liver)) and had transplant at age 61.

    My special interest is H.E. I feel I still have reasonable residue of HE after transplant, and my pre transplant H.E. experiences were on occasion beyond belief..... if I can help you with this area (or any other) please come back to me. I would say the family suffer at least as much as the patient, possibly more. everyone keep strong, stay together, strength in numbers, I found Citalopram (anti depressant) helped me with anghst from H.E. Suddenly being incapable of simple tasks that were performed without thinking previously took me to new highs of frustration and anger, where my family suffered along with me!! Citalopram helped me laugh at my predicament, took the sting out, I was still a "fool" but a less angry "fool" :) Take care, stay strong, Charlie.

  • Hi. The age thing on its own shouldn't be a barrier. There is one poster on here who is 69 who had a transplant only three years ago I think. Maybe he'll be along shortly...

    Lou Reed recently had one that ok ultimately proved to be unsuccessful, and he was 71!

    I think Larry Hagman had liver cancer (after being diagnosed with Alcoholic Cirrhosis) in his mid sixties. Then he had a transplant and lived until he was 81!

    Of course it's true they look at the patients overall health, and the prospects of post op life expectancy. It costs the NHS a lot of money so I guess it unfortunately makes some sense, especially as organs aren't in plentiful supply.

    ....but at 67 he could possibly live for another 15 years. Just like JR Ewing.

    Good luck :)

  • So sorry to hear about this but I think you

    should take some advice on medical negligence.

    Good luck

  • i agree with carmik

    get union advice or ACAS

  • I live in the UK and two years ago I had a liver transplant which has transformed my life. Before a was little more than a vegetable sleeping for up to 16 hours a day. Now I am a member of society again freely socializing and taking an active part in my family and friends. My point is that I was 67 years old when I had the transplant,so it is not merely age that is the overriding factor. Keep on pressing for a transplant!

  • Good luck in the future to all of your family. Stay strong

  • Hello Natalie,

    Read your post this morning, and been turning it over ever since. It is almost beyond belief, but having experienced an alarming lack of information on Autoimmune Hep, when I was diagnosed in 2012, and no support, I fully understand how lost you must all feel.

    First, without delay, demand an urgent second opinion.

    Second, consider instructing Clinical Negligence Solicitors. "Chambers & Partners" list the top firms in the UK. I recommend this, not because it will change your Father's condition, but to address the substandard care he appears to have received, and also to allow health care professionals to learn from their failings.

    You mention Methotrexate was prescribed to treat you Father's psoriasis, and treatment went on longer than it should????

    I have looked up this medication in the British National Formulary. There are very clear guidelines on side effects and cautions. It is a toxic drug. If he was monitored correctly, your Father would have had full blood count, liver function and renal function tests before medication was introduced, followed by the same panel of tests every 1 to 2 weeks until medication was stabilised. Thereafter, for the duration of treatment, whilst close monitoring was undertaken for signs and symptoms of hepatic and or pulmonary impairment, the same tests would have continued at 2 to 3 month intervals.

    Kindest regards,

    Maggie K

  • Hi Natalie,

    Me again. Still thinking about your dreadful situation.

    You haven't mentioned any treatment for ESLC, which appears to have been present since around 2013???

    Can we talk? British Liver Trust have my contact details.

  • Hi all

    Thank you so much for your replies

    I have been trying to get back on since yesterday to reply but have been in the process of clipping my parrots wings since getting home from work yesterday...painful procedure if you have never experienced it!!

    I will go back through the replies and try and make sure I reply to all questions asked. So firstly

    The hospital we attend is a specialist liver unit. My dad was transferred there last February time after requesting it to his consultant at our local hospital..

    The ones who got us in this mess in the first place. The response him and my mum got from our local hospital was that he didn't think the specialist liver unit would be able to do anything and that he probably wouldn't see past 6 months! There was a bit more said to that as you can imagine. dad went through various tests etc and him and mum spent two full days at the special unit having so many tests and speaking to social workers dieticians aneathetists etc as part of his liver transplant assessment to see if he was eligible. When we went for the results of this they told us a transplant was not an option as he has other health issues (diabetic, rheumatoid arthritis, and his ecg had shown that a small part of his heart did not beat..likely due to a heart attack that he hadn't known about) somethin which is apparently common for diabetics.

    My dad was questioning this decision the whole time we were in with the consultant and said he would survive he would make sure (bless him) but they were adamant it was not an option and had been decided at the weekly liver transplant meetings they hold. They said it would be better to carry on as he is with some quality of life and the offer of a TIPS to try help the ascites as they were convinced if he survived a transplant he would spend best part of a year recovering and said it would be a year off his life span. This was September.

    When we went back a couple of months after.. we saw a different consultant again who (never seen same person twice) said that my dad was in the highest risk category of the TIPS not working and would want us to seriously consider going through with it. When asked by my dad she said if it was her dad she would encourage him to have it. So this was something we agreed on going forward with as family. At an appointment in January we saw a lady who said she didn't think the TIPS was a necessary step anymore as he hadn't filled up since October. So they would keep him on the list but not pursue it for the time being. It was at this meeting I raised my concerns about HE as I had to call 999 in November as my mum got me out of work sobbing because she felt my dad had taken a turn for the worst.

    When I arrived he was impossible to rouse, we couldn't get him awake to give his medication to or his insulin. When he had woke up early hours of that morning he had done some 'odd' things symptomatic of HE. I rang our liver unit for advice and they advised me to get an on call doctor out or ring 999. I did the former initially and after two hours got sick of waiting and rang 999.

    At the hospital he failed a couple of the questions they asked relating to memory but they admitted him to AMU. We were told to wait in the waiting room while they got him settled this was at 7pm after being at the hospital since half 2. At 7.45PM we were still waiting ..we were panicking thinking something was wrong so went to find him ..He was alone in his bed and nobody had come to tell us. Anyway they discharged him the following day not really giving any explanation even though I insisted it was H.E.

    So as I was saying I

  • Sorry it froze so had to send it half finished!! the January appointment I mentioned HE and consultant prescribed lactulose 5 ml morning and night.

    He has been taking this since but HE is still present.

    Our local hospital have consistently failed my dad and my family and I could write a book if I am honest. I have sent several emails to Healthwatch about this.

    At his most recent appointment at the liver unit we saw ANOTHER consultant. Who I found to be a waste of time. She told us TIPS was an absolute no now because of the HE being present. Wanted to discharge him and send him back to our local hospital and wanted to see him every 6 months when I refused to go back to our local.

    I attended a first aid course for work in Feb and tutor said Natalie those who shout loudest are the ones who get heard..If you're not happy then tell them. So this is why I made my feelings known at the most recent appointment. I am extremely p***ed off (excuse my language) at the fact they have told my dad he is going to die and told my mum she is losing her husband and they have been offered NOTHING. We have left hospital everytime completely unaware and without knowledge of what is in store for us in the future and I am FUMING. The more I think about it the madder I get. They have put him in this position nobody else and they should be doing what they can to help. Because I made my feelings clear and confronted the consultant with this query we found out we were entitled to Macmillan support and a social workers help. I told them my mum is on the verge of losing it because she is tired, worn down and needs help. On bad days my dad is a handful and hard work. If he is having an aggressive mad at the world day he is even worse.

    I told the consultant that he has been told he is going to die and left to process that by himself with no emotional or psychological support.

    A social worker phoned last Thursday which was great and on a positive he was really helpful..but unfortunately misinformed. He was under the impression my dad was on the transplant list. When we explained he wasn't and has been told there is nothing they can do for him he was shocked we hadn't been given any support already or offered some.

    After a discussion with my mum social care have referred to Macmillan and we see the GP Tuesday for psychological support and also to process the Macmillan support.

    After reading so many of your comments I have told my mum this evening that at this appointment I will be requesting a transfer for a second opinion.

    Please ignore this >>> im on my phone and it won't delete :( of of to so

  • Margaret thank you for your reply also it is greatly appreciated. My dad had regular tests on the methotrexate and then they discharge him whilst he was still taking it. 3 months later he was on holiday and got a phone call from the hospital sayin he must come to the hospital straight away. He told them he was on holiday so they asked him to go to the nearest hospital to where he was (luckily he was holidaying in the uk).

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