A bit of a shock!

Hi everyone, would love some advice if anyone can help? My Mum has been under a liver consultant for about 5 years . I attend every appointment with her and it's the same old things ' all ticking away nicely, try to lose a bit of weight if you can, see you in 6 months!' I was always under the impression my mums liver was damaged due to hepatitis and her being a little over weight didn't help but the consultant never seemed very concerned! About 3 months ago I went away for a weeks holiday and wasn't expecting to return home to such a nightmare! My Mum had lost about 2 stone, she didn't know what day it was or how old she was , she wasn't sleeping, she was nasty and hadn't cleaned herself and the house was filled with urine soak clothes. Her doctor is useless and recommend the memory clinic even knowing her medical background . That night we ended up at A&E as her temperature was really high and she was vomiting. In A&E the doctors started treating for an infection but also started using the word ' cirrhosis ' and ' end stage' . They kept her in and her consultant came to the gastro ward the following day so I asked her about what the doctors had said. She knew how poorly my mum was and said she has weeks/ months before she dies!!!!! She knew was drinking a glass of wine at night, she knew she was eating buns when she shouldn't and not once in the 5 years did she think to tell her to stop and now it's too late. She's now left so there is no liver consultant and we seem to be in and out of hospital and nobody seems to give a shit !!! I am now a expert on everything to do with the liver as I care for my mum 24/7 and have researched everything I need but I can't help feeling this wouldn't be happening if the professionals had been upfront and not pretended my mum was fine .

54 Replies

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  • I have just read your post and I am hoping things will improve soon. On a practical level I would ask in the hospital where and how you can contact patient liaison (PALS). There is one in every hospital- or there should be. They can be your advocate and know who to talk to. They will come up with a report on the situation. Obviously when she comes home she should not drink any alcohol, and should try and lose weight. There are a lot of causes of liver problems - Do you know what kind of hepatitis she has - it can be a specific infection - or it can be a general term meaning inflammation of the liver. Have you any other family members who can go to the hospital with you and help to ease the load on you? Two pairs of ears are better than one. As you are your Mum's carer - what facilities do you have access to for carers - when my husband was in hospital and I was his carer there was a dedicated carer's lounge.

    Initially I would speak to PALS, speak to the doctors and ward sister / senior nurses on the ward. Good luck. There are lot of us out here and we are thinking of you.

  • Thankyou for your response, after speaking to my mums consultant and her leaving the hospital I've been doing everything humanly possible to try and make her better! Juicing any food that could benefit, no salt no alcohol only organic but then she get another infection, goes in hospital and her diabetes goes out of control because they don't make her eat !!! I feel like I've neglected my family ( my husband is a star and looked after everything) I work 17 hrs and my mums sister steps in to cover me with my mum . I'm the only child so the buck stops with me ! I wouldn't have it any other way. Her doctor won't prescribe her antibiotics so she has to go to hospital and it starts again. Sorry to vent to you but when I do it to family I burst into tears xxxx

  • It often does help to 'have a rant' at someone who is not a family member!

  • Thank you, I'll try not to send too many your way xxx

  • Oh dear! I hope your mum is feeling better soon Cathy. I'm sending prayers and love your way. After having battled Budd-Chiari Syndrome (it's a serious liver condition) since 2009 when I was a sprightly 32, I have been sliding downhill on the health and mental health scale. Hope your mum is well now and you and your family are fine. xx

  • Hi. how awful! So, you mean to say that the consultant did not warn your mum from the start that she must not drink any alcohol at all?? Was she diagnosed as having cirrhosis at that time? If so, that is diabolical; the first thing they should do is lay the cards on the table and tell you like it is; so you are fully aware of the situation and the consequences. At that time, what did your mum think was wrong; she didnt know she had cirrhosis? Obviously with a damaged liver; if the cause is drinking, you must stop (did your mum not realise this) Is it too late for her to have any chance of a transplant??? Have you asked about this?

    Some medical people do not give a shit i'm sorry to say especially if the cause is alcohol; however, others do, and even if its is due to alcohol, so long as you stop, many will do as much as they can to help; but many average people don't accept that alcoholism is a disease. My understanding is that you usually have to be 6 months alcohol free before being considered re transplant; though also, some people may simply not be well enough to have one.

    I'd ask about transplant; you never know, maybe there is a possibility.

    xx

  • Hi thanks for your response, the word cirrhosis never came up by the consultant. She was put on a cocktail of tablets that were supposedly to help the liver which at the time I didn't question like rifaximin, water tablets, and antihistamine to stop her itching! I didn't know these would mask all her 'end stage' symptoms!! She was diagnosed with non alcoholic fatty liver disease due to hepatitis about five year ago and it's been like a routine dentist appointment ever since! If the cards had been laid out I could have saved my mum xxx

  • You're going to need to contact the PALS to get to the bottom of this.

    What you're saying is unclear - hepatitis means inflammation of the liver - so if anything it might be the other way around - NAFLD (fat infiltration of the liver) leading to hepatitis (inflammation) leading to fibrosis (scarring) which ended up as cirrhosis (a lot of scarring).

    In the meantime you need some clarity right now;

    a) Exactly what have they diagnosed her with.

    b) What is the state of her condition and her liver

    c) Why is she excluded from being transplant listed.

    Very very sorry to hear what you've been through. Try and keep strong.

  • She got hepatitis in her twenties (now 67) diagnosed with NAFLD about 5 years ago ( consultant harps on about hepatitis being starting point so I've gone along) we have been told after scans and biopsy that she had some scaring on liver but never ever mentioned cirrhosis or end stage or nothing really except see you in six months xxd

  • Do you mean she was diagnosed with viral hepatitis in her 20s (B or C) which was left untreated and then she became diabetic (which is possibly the cause of the fatty liver). The combination of viral hepatitis (if that's what your understanding of her 'hepatitis' diagnosis is) plus diabetes plus drinking alcohol will have, over the years, constantly damaged her liver.

    If she still has active viral hepatitis plus NAFLD it's difficult to know what the docs would recommend. They can treat the symptoms of her struggling liver with the drugs you mention, like the water pills etc, but I'm not sure how useful treating her viral hepatitis and working on her diabetes will help at this stage.

  • I'm not sure if it was b or c . Hepatitis has come up when talking to the consultant, I know it was through a blood transfusion and I thought it had been cured? But all the illnesses my mum has suffered over the past few years like type 2 diabetes, itching ( consultant told me this was due to medication never mentioned liver) swelling ( this was lymphadema not liver) we were told my mum had vitamin k problem that caused her to bleed ( again apparently unrelated)? Looking back knowing what I know now I could kick myself. Red flag after red flag but sadly I didn't know to look and no one every told us it was serious. Thanks it helps to talk it through xxx

  • Anything that causes inflammation of the liver is "hepatitis" so the docs saying your mum had or has "hepatitis" without adding a definition of the cause is very vague. Hepatitis C and B are blood borne viruses. Yes they can be transmitted via blood transfusions but only many years ago when blood was not screened in the UK or if the transfusion was abroad in perhaps a country where blood products were not screened. If it was "C" she would have had to go through a drug treatment a bit like chemotherapy, the drug often used was interferon. It doesn't have a 100% success rate. If it was Hepatitis B there is no cure, just long term viral suppression with medication. I would get the docs to clarify partly for your own health, as both viruses can be passed on through blood to blood contact, at birth for Hep B as well as via things like razors or a toothbrush. However many many things cause the liver to inflame and there are things like autoimmune conditions also tagged with the term "hepatitis".

    If she has gone many years with active Hep C or Hep B that might account for her liver damage and symptoms such as swelling and itching. But then again the diabetes can damage the liver over a long period and cause similar symptoms, as can alcohol. It's a confusing situation for you and really all they can do at the moment is manage the symptoms unless they have diagnosed the cause for definite.

  • thanks, I'll ask on Thursday at the hospital. She always referred to it as something she had for a few months when I was about 2 . I'm guessing it was hep c ?? Shame she's too confused to ask. Thanks again xx

  • If she says it was something she had for a short time it might have been A or E which are self limiting (ie dont need any treatment and dont usually leave lasting damage) these are picked up from things like contaminated water and food or things contaminated by faeces. Without her medical records you have no way of knowing what type of 'hepatitis' she and the docs are referring to, so maybe focus more on the side effects she is having from the liver struggling and see what the medics can do to make her more comfortable rather than puzzling over the type of 'hepatitis'.

  • I'll try to find out on Thursday, thanks xx

  • I feel your pain.

    But in the six monthly visits were there never any scans ordered or fibro scans etc? What symptoms caused the GP to refer her to a consultant in the first place? What follow up or medication did she get for the hepatitis?

    I can relate to your problem as it was the GP we trusted who never properly recognised my late husband had any liver problems and said he had diabetes 2 - until he became decompensated and the ascites which we all thought was digestion issues wind etc By that time it was too late although we tried.

    I think that its the ascites which has the worst outlook and of course cancer but provided your mum stays off the alcohol and treats the HE ( memory issues) and eats the right things and learns how to live with cirrhosis the decompensation can go back into compensation .

    Hope her condition improves soon! This forum is full of so many people who really have come out the other side and success stories - keep hoping and never give in......

  • My mums hepatitis was in her twenties ( now 67) so not clear on that but as far as scans and biopsy, yes had both and was told there was Some scaring ! Never more than that . I even addressed drinking alcohol with the consultant and she said in moderation??? My mum never drank loads but on a night out would drink plenty. I should have looked into medication when she was prescribed new things but honestly we looked on this like having eczema or something , it was there but not at all life threatening . How wrong was I xx

  • I'm so sorry that all this has had to happen - Perhaps the scarring was so slight that the consultant thought moderate drinking would be ok and not wishing to limit her lifestyle. I suppose it would have depended on her blood tests - if they were all coming back normalish then maybe the consultant felt there wasnt any cause for concern - apparently a lot of people live and die with cirrhosis and not even know they have it. I think it's the heavy or binge drinking that gives cirrhosis or having hepatitis . Did they test to find which hepatitis she had B or C or autoimmune? As it could be the hepatitis that slowly destroys the liver rather than the the occasional drinking bout. But the consultant should have at least ADVISED against any drinking - to maximise the livers health

    It sounds like it's now decompensated but Im sure if she got referred to a big liver specialist hospital - like Kings or Leeds etc she could get the right treatment.

    It sounds like you have been doing everything you possibly could for her so don't feel hard on yourself. And wishing her all the best

    Is she taking LACTULOSE for her memory issue?

    xx

  • Yes now taking lactulose after I've asked about it, she has been told before her consultant left that she isn't suitable for a transplant due to age . We will keep going and hopefully last longer than they say xx

  • I think that A and E admission to hospital is always a bit dodgy as all they are concerned with is treating an immediate life or death problem - my husband went to and A and E wanting asking for a drain - they kept him in until they had stabilised AKI kidney dehydration and then sent him on his way. Inspite of very poor alarming blood results........

    Your Mum needs to have an emergency appointment with a liver consultant or gastro at the hospital who will refer her in to the correct ward which is what we did the second time and it was far far better care and treatment which I cannot fault

    So the lesson for me came too late but if it can help anyone else then some small consolation.

  • I totally agree about A&E every time we go now I will ask about her liver and they talk only about her infection, that by the way have never been able to find!!! I really sympathise with you , I didn't know this level of heartache existed! my mum is more swollen every day and I know soon she won't even know who I am . Thanks xxx

  • I agree re get an emergency apptment with heptologist....re her age.....67 is not old....i see no reason why she might not be considered. Unless she is too unwell/ they are sure it would not work or something. Maybe im clutching at straws; i dont know; but i'd be demanding answers as soon as possible.

  • I will definitely be looking for answers. I think it's a combination of age and the fact she is very ill. HE, muscle have wasted to the point she can't walk unaided, swollen from head to toe, kidneys starting to fail, really yellow and sleeps a lot of the day. Not too much pain yet so I'm planning the best Xmas ever! If she does go , she's going to have a smile on her face xxx

  • Good luck; i do hope there is still a chance for your mum x

  • Think hep c!

    I got hep C from blood transfusion in 1970s. Please find out if she may have had one which caused it. There is a fund to give you some money relating to this, look up Skipton fund hep c on Google. We are all dying from this tainted blood, I have had transplant but think my cancer has come back. Most gps are useless about this subject but it is fault of government and no education about their buying contaminated blood. Do it fast you need proof of a transfusion from 70s and 80s and no IV drug use. Then look up hep c trust charity. I have had and known hundreds of people with same story and it is the virus which ruins the liver not moderate drinking. Do leave me message if you want. First thing is to get test for hepc asap the gps are useless at suggesting it, insist on one. I am 61, it's the baby boom generation who are most at risk. Anita roddick Bodyshop had it from childbirth transfusion. She found out she had it and cirrhosis then died.

  • Thanks for this, I'm in with my mum to see specialist liver nurse next week as her consultant has left. I have a horrible feeling she wasn't in this country when she had transfusion. My mum can't answer any of my questions as she's very confused and childlike due to HE but I'm going to accumulate plenty of questions and make sure I get answers! Hope you continue to do well and thanks xxx

  • Any transfusion in this country will be in her records

    Annie

  • Mousehold, I like you got it from a week after Childbirth transfusion in 1973 when every time after my GP thought my complaints were all in my mind because they only started testing blood in 1991. They had not heard of Hepatitis C until 1991 when incidently I went to give blood at work and received letter 'thank you but no thank you." Then before Christmas 2012 the HCV added an extra - Liver C Primary (Lymphoma). I had resection on 4th January 2013.

    My GP eventually writes prescriptions for me as directed by the hospital but I bet I know more than they do about HCV, Interferon, RIba rage, Harvoni - where do I stop lol!

    I cannot understand why Cathy71's mother has not been diagnosed or warned about anything, HCV, Hepatitis etc. I always get a letter after every appointment confirming what we discussed, what the consultant suggested etc. This all seems terribly sad.

  • What a horrible, horrible shock for you. I'd suggest reporting this "liver consultant" for negligence! I don't know how old your Mum is, of course, but I did want to let you know that I came back from end stage cirrhosis just last year: it was a long haul and I did almost die, but I'm still here. I very stupidly allowed myself to fall off the wagon over the last few months and it'll take me a while to recover from the new damage - but I've only myself to blame for that and will just have to suffer in silence until my body - and my liver - return to what they ought to blame.

    Hang in there, and please keep us up to date. Wishing you and your Mum all the very best during this frightening time xx

  • Thankyou, and you keep up the great work! I've received more support since posting on here than any of the professionals have offered xxx

  • I don't think 67 is an age at which your mum can be excluded from transplant. You need to clarify the grounds on which this approach has been concluded. I think you should push for a transplant assessment, which I believe is different from the "assessment" that has been made so far.

    A transplant assessment is made at a transplant unit, takes about a week and checks physical and mental condition and a panel of experts then make a joint decision of further treatment.

    If this has not been done then you really should push for this as the next stage in her treatment.

    As Mr X said you do need to clarify what the initial cause of hepatitis was. As far as I know if it was Hep C then there would be a very good chance she would still have this. With hepatitis B however it would have been likely she would have made a complete recovery after only a few months.

    My experience was very similar to your mums I think. I was diagnosed at 27 with cirrhosis however the cause was never found. I continually received 6 monthly check-ups/consultations. They did become routine and it felt like a quick tick in the box. However last year between consultations I took a bad turn for the worse and by the time I presented myself to the GP and consequently got a consultation I was first told my symptoms had become too severe to be considered for transplant. I had to make a bit of a case for myself and was sent to Kings Hospital for assessment a couple of weeks later. I had an assessment and was put on priority and received a transplant within six weeks.

    In summary I think you need to find out the exact history of your mums hepatitis and then conclusively find out why transplant has been excluded as treatment, and perhaps push for a transplant assessment.

  • Always willing to offer support and virtual hugs where I can. My symptoms were missed too, but that was because of other underlying medical issues and in no way my GP's fault: he'd known I was a very heavy drinker and was keeping a close eye on me - it was unfortunate that existing issues prevented anybody from noticing that I was becoming really very sick. I eventually ended up in A&E, vomiting blood, was admitted to obs within a few short hours and moved to ICU the following morning. I had all kinds of drips, needed three blood and plasma transfusions, couldn't eat and had eight litres of fluid drained from my abdomen. Not a fun nine days, but I made it and am not even considered to need a transplant. It just took me a long time, and many months stuck in bed while I learned to work my legs again (I was months in a wheelchair).

    I notice that others have already mentioned PALS. Definitely, definitely get in touch with them. This is a situation that could have so easily been avoided; I really feel for you xx

  • Thanks, people responses are really giving me some hope! You have been really brave as it sounds like you have really been through it. Why is there not more awareness about liver damage out there? I thought we were on our own but have quickly found its effecting too many people xxx

  • So sorry for you 😘😘😘 someone may have already said this but in case they haven't - request your mothers GP notes and Hospital notes (max cost Β£50) - this is the only way that you would be able to see if her treatment was neglectful - check blood test results etc - I did all this for my hubby who was 'suddenly' ill from nowhere (I was a nosy nurse and wanted answers) it turned out our GP had ignored all his blood results 😑😑😑😑 xxxx good luck and I hope you find the answers you are looking for and ❀️❀️❀️ for your mother xxxxxx

  • Yes you just reminded me. As I said above I'd had cirrhosis for years, but remained stable until last year. The first time I went to the GP between consultations I had a blood test with a bilirubin level of nearly 400 . This was ignored and I was never notified!!!

    I really don't know how this can happen. GP's should be reprimanded when they simply just don't check results, it was nearly a life/death mistake for me. Dr's at the hospital were reluctant to let me know this, it was only when I pushed for answers I found out.

  • Grrrr - ask for your notes !!!!! I sued the bastard and won !!!!! Doesn't make up for the damage done but has paid for loss of business and no wages for years 😫😫😫 - we won the case on the pure fact there were many blood tests taken over years that were all elevated but GP just wrote 'normal for this patient' - there were several letters to our GP from hospital consultants asking him to investigate the 'deranged liver function' and he had just written 'file' on them ????? One of the other GP's had actually written the year before rob was diagnosed 'slightly jaundiced' and still they did nothing - it was a locum GP that sent him for the different screenings - haemachromatosis/hepatitis c/b etc - and when results came back out GP said 'how did we miss this' ??????? I worked for NHS for 13 years and a firm believer BUT mistakes happen and because people think 'oh I can't complain it's free etc' nothing changes 😒😒😒 if something is done wrongly to you and you let it go - it will keep on happening to others after you - you are helping by pointing out problems etc !!!! If you let them know things aren't working they can change them - if they don't know they can't xxxxxx I would defo look into it further - I am sure our old GP won't let anyone else's blood tests get ignored so we have probably helped quite a few people (hopefully) 😘😘😘😘

  • I have heard the consultant and doctor say " blood result is normal for your mum" a few times and I didn't question it . I'm seeing liver specialist nurse this week and maybe she can tell me more now consultant has left. I'm on a mission thanks so much ❀️❀️

  • Do you know what though. For the moment I would put what has happened to one side. You need to concentrate on going forward. Push for a proper transplant assessment.

  • I will be bringing this up on Thursday when we go to the hospital. she has had two procedures over the last couple of years ( non liver) and both resulting in abandoning the op as they couldn't stop her bleeding! ( I never joined the dots and thought this was her liver.) even her liver biopsy last year ended up being 2 weeks in hospital. I'll get all the facts I can on Thursday. I might even ask to be referred to another hospital that has a specialist. Thank you, I need a plan or I'll go in and ramble on and get no where

  • Before you go to the hospital make a written list of your questions and make sure you get to ask them and also jot down any answers.

    Ask for nae demand a referral to a transplant unit even if they decide your mum isn't able to have a transplant they are generally the best hospitals with the best specialists. 67 is not an out and out bar to transplant, each patient is assessed on their own merits/health history - your mum should have been referred a long time ago so she was on their radar just incase the eventuality which has occurred now happened.

    At my husbands transplant assessment there was a chap aged 71 being assessed at the same time.

    Wishing you all the very, very best.

    Katie xx

  • Thanks Katie, your a star . I will write a list and I'm taking my friend that's a nurse so she can handle the more technical stuff. I'm a little frightened to really go for it in front of my mum as she's forgotten the consultant saying she only had a few months to live! Every time Its been mentioned it breaks her heart. So my friend can take her for a wiz round the hospital in her new wheel chair while I get some answers. Thanks for all your help xxxx

  • Robswife, maybe it's because I am on the treatment I am saying this (because RIBA Ragers feel things more) and even though I know you are giving the right suggestions to Cathy71, I feel that when she finds out about the negligence she will be blaming herself for not being more insistent in the first place. Also if you remember, my husband is going through a different type of trauma at this time and inwardly blaming his GP (which he has now changed, I have not) but I do not want to know even if we can prove they pretended to do certain tests and he was told all tests were ok when they weren't, I cannot put things right and have to live with them. I just feel I would be more hurt if we proved we were right.

    I apologise if I am talking rubbish but I am speaking from the heart. Cyber hugs! XX

    I have just read how you dealt with it and you are correct but I keep thinking if I encouraged my husband to do this (which I can) I know it would affect him horribly at his age!

  • 😘😘😘 everyone is different xxxx and you are definitely not talking rubbish 😘😘😘

    I just put our story out there because many aren't aware of their rights regarding notes/tests etc - for us (me) it helped because my nursey brain needed to know how it all happened xxxx

    I am well aware people make mistakes and they can be overlooked but blatant neglect and lack of care needs to be challenged - if you choose to xxxxx

    Our liver nurse missed robs diabetes blood test diagnosis !!! They didn't know he was diabetic for 6 months because of the error - she was absolutely devestated and came to find us immediately in tears - apologised over and over again = a genuine mistake (I sent her flowers as I didn't want her to feel bad) that's the difference - a one off mistake that caused problems yes but once she was aware she was distraught - our GP made the same mistake 3-4 times a year for many years - didn't apologise - avoided us like the plague = neglect and lack of care !!!!

    For some people it is useful and helps for others - not knowing helps them 😘😘😘

    It's a individual choice xxxxx

    Hope treatment is going well ❀️❀️❀️❀️❀️

  • Cathy, your story touched me so much. It really hit home. I have an only daughter who is just wonderful to me and I love her very much. You seem like a lovely person and daughter, I'm so sorry you are going through this. You are right, this page is the absolute best! They speak the liver lingo, explain what it means... And they care. Good support from people who have been there!

    I have hep c and NAFLD, and recently have had elevated blood sugars.

    It's hard I feel like no one ever sat me down and outlined the consequences and progression of fatty liver and hepatitis. Often they Just advise loosing the weight, staying clean & sober, order ultra sounds and fibro scans.. No real concern.. You be good if you can get your weight down. I now have elevated AFP ... Until this, I hadn't taken it as life & death.

    Best Of luck to you and your lovely mum...(she must be lovely as you are so kind and caring)

    Fingers crossed and don't give up hope!! Xx

  • Thankyou so much for this , my mum means the world to me and is one of my best friends. Your relationship ship with your daughter sounds very similar. My mum has no idea what's going on she's doesn't know people, how old she is but the only blessing is she still knows her two beautiful granddaughters ( of course I'm biased, lol) I feel like I've lost a bit of her already. At least my mum has forgotten what the consultant said and she thinks she's fine ! Please will you do everything in your power to avoid this , the little changes can only help. I think if we'd known sooner this wouldn't be happening, at least not yet. Stay well . Love to you and your daughter ❀️❀️

  • I was confirmed with cirrhosis yesterday.. Hopefully in time to do treatment. Thinking of you and your mum over the holidays..

  • Sorry to hear about your Mum. I am disgusted with the medical profession. My mum was diagnosed in late March 2015 with cirrhosis and died June 2015. Never drank alcohol in her life, Doctors couldn't say what had caused it. When I look back all the obvious signs were missed by her GP's- abnormal liver function tests, intense itching, swelling of her legs/feet, slight jaundice. We never thought of cirrhosis ourselves-her GP even tried to tell her that she must be sensitive to her washing powder/soap etc when her itching was severe and keeping her awake. We never connected it to a liver problem until after when we did a bit of research but can't believe her GP couldn't see this! Her feet got so swollen we took her to A&E where they admitted her but of course she was passed from ward to ward before they actually told us it was cirrhosis. We were than led to believe that things could be controlled but she was no sooner home than had to be readmitted with confusion from the toxins-no one had bothered to give us any advice about the importance of regular bowel movements to avoid the toxin build up etc. She basically had to stay in hospital during this time ( march-june) apart from 2 wks with very little information. What a shock towards the end when we realised she hadn't long. This was the first time she had ever been in hospital and hated it-it was terrible for her to end her life like this. I will never get over this and wish I had pushed for someone to take all of her symtoms seriously. I know it wouldn't have changed much but at least we, her family would have been more prepared for it and maybe the quality of her last 6mths might have been better. Do everything you can for your Mum.

  • I'm so sorry for your loss, I send my love to you and your family. I can't believe that when you research cirrhosis it states it one of our biggest killers YET no bloody doctor seem to recognise the symptoms! We did know my mum has non alcoholic fatty liver disease but when my mum presented cirrhosis symptoms we were told they were unrelated??? My mums consultant was a lovely lady and I'm sure she avoided telling us bad news. In the end after the A&E Dr mentioned cirrhosis I confronted her and she came clean. Now she's said it too late to make any difference but I will keep trying. Thanks for your wishes xxx

  • Darling xxx patients shouldn't be diagnosing their loved ones !!!! That's what the GPs etc are supposed to do 😘😘😘😘 don't ever feel guilty xxxx

    Think this clearly shows that our GPs/A &E dept need to be made more aware of 'liver disease' and all its symptoms xxx

    I know that the 'British liver trust' have been working hard to do this - their recent 'hepatic encephalopathy' awareness - proves just that xxxx

    It is incredibly sad that our loved ones have had to go through these things but on a positive note - it is making the medical profession more aware !!! So hopefully when the next 'patient' arrives with 'itching/swollen legs etc' they will remember your mum and investigate further 😘😘😘😘😘

    So so sad that someone should have to go through this - especially when so much progress has been made medically 😩😩😩😩

    Please don't blame yourself for anything - your mum would have known that you were all there for her and loved her ❀️❀️❀️❀️❀️❀️❀️ big hugs xxx

  • So sorry, to hear about your Mom's poor health. It's so hard to hear that they weren't very forthcoming in just how bad her health had gotten, and had not begun more preventative measures sooner. Did you attend all her appointments with her? Could she have left out some of the more grim details to spare you from knowing just how bad she was getting. I'm assuming though that's probably not the case. I don't know much about Hepatitis, but Ive always thought the one contracted through blood transfusions were of the viral type. I didn't think they really had any effective treatment for it back then, at least not anything that cured it, but that's just what I always thought and Im probably wrong. Just a thought, if she's got an infection then maybe that's been a priority to get that under control before considering any other treatments/surgery, because it may be too dangerous for her to be considered for transplant at this time, plus she has had hard to control bleeding in a prior surgery/procedure, if I read that right. Someone definitely owes you some answers and keep pressing on til you get them. I kinda feel, that you blame yourself for not picking up the signs sooner, but you didn't drop the ball here, they did. Please don't carry that kind of guilt. My thoughts and prayers go out to you and your Mom!

  • Cathy 71, all your regrets, I am so sorry for you but remember, we all keep in touch with each other on Health Unlocked and are very supportive. Remember people on Health Unlocked care and, if you have not heard from someone for a time, there is usually a reason and if you feel like ranting, please do, we all understand because we all have a story to tell. Cyber hugs. XX

  • Thanks ❀️

  • Liver disease can be like that one minute every tjinhg is fine then it gets pretty nasty pretty quickly. I am appalled that your mother has not been properly advised with regards to her diet and DRIKING these are fundamental steps in the treatment of liver diseases. You now thathave a number of options you can demand a second opinion (probably ineffective cos the medics will close ranks but it puts them on notice that you are on the case always worth doing)

    Ask about thr posibilty of a transplant do this in writing so you have a written record of their response Write to the chairperson of the local NHS trust ethics committee. Write to your MP, write to the secretary of state for hralth. Allways keep records of meetings, e-mails, telephone calls and correspondence. All the contact details you need are on the internet.. Your local NHS trust have a duty to treat as well as a duty of care. and it seems to me that they neglected to discharge this duty when they failed to give lifestyle advice. Unfortunately I am not aware of any lawyers doing pro bono work in this area www.taintedblood may be a good place to start looking for legal advice. Did your mother get the hep c from a blood transfusion, if so she is entitled "compensation" www. skiptonfund

    You may have a fight on your hands if I can help pm me my legal expertise is in the area of Occupational Health and safety

    All the best

  • All the doctors need to do is test her blood and it will show whether she has Hep C. It never goes away. You must be treayed to kill the virus. I had it for 42 years, am now 64, had to treatments to kill it. She needs a lot of attention. I would focus on that and forget the mistakes that have been made, they happen to all of us. I have my own horror stories from doctors not listen and neglecting me. Some quality of life could be returned to your mother with propwe care but she really needs to be tested for hep c as well as hep b. Good luck.

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