First suspicions of having cirrohsis

Four weeks ago my 44 year old Son was told by his GP that he had perhaps 12 months to live due to liver disease, suspected cirrhosis. Although he has in the past consumed much alcohol he was being treated for mental illness for over 12 months with all blood tests etc not showing signs of the disease. On 9 September his GP asked Birmingham Queen Elizabeth liver team for an urgent appointment which has now arrived but is 2nd November and despite many telephone calls we cannot get in any faster. As stated his GP only suspects cirrhosis so there is no consultant diagnosis which is causing him much distress and a bad affect on his work as you may expect. I have to say though that reading comments on this site he does appear to have all the symptoms. Constant tiredness, yellow tinted eyes etc etc.

It gives the feeling that the long delay is the medical profession saying to him "your fault for drinking so much" the same as some surgeons delay operating on obese people, or is that me being a paranoid parent

Any comments would be much appreciated.

27 Replies

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  • Hi Ireland. Im also 44 with alcohol related cirrhosis. I too have drank too much over the years, but i never ever thought my level of intake could produce such results. I dont even think the health professionals knew, maybe thats why the 'safe' limit has been reduced recently to 14 units. If your son's GP is anything like mine, they have very little experience with cirrhosis and I would say his comment about life expectancy is 100% unacceptable.

    My GP is quite supportive. He's said that my level of 'middle class drinking' has become an epidemic, and says the system we live in is as much to blame as my own habits. (Id say its more my fault than societies though!)

    Ive never been told of my life expectancy, or asked.

    Giving up the drink and trying to be as healthy as possible is the only way to control the advances of this. I hope your Son and yourself dont get too down about it. I look at it as a challenge now not a death sentence.

    All the best Matt

  • Thanks Matt. I too found the GP comments totally unacceptable, especially if there is doubt, but what is of more concern at the moment is the time it takes to get a referral to a consultant. However your comments have given us more hope than we had before I wrote on the blog. Thanks for your best wishes

  • Youre very welcome. Please also give my best wished to your son. It can be very frightening finding out that youve damaged yourself by drinking, let alone to be told that by a GP. I was diagnosed 16 months ago and some folk on here have had the diagnosis for 10 years plus. Stay positive.

  • Hi Ireland firstly your sons appointment is really very soon, they don't judge anyone on how or why people have got cirrhosis. Gp's as good as some are they are not qualified to give anyone a life expectancy that's what the specialists are for. A Lot of people live with cirrhosis for many years before needing any kitchen of treatment, so until they start investigating just get him to live a healthier lifestyle regarding food all fresh foods and cut out salt completely, plenty of water and exercise. Hopefully you won't wait long to get results but for yours and your sons sake just wait until you see consultant and ignore for now what gp said x

  • Kind not kitchen hate predictive text lol

  • Your predictive text was quite clever - knew your next sentence was going to be about food !

  • I am not a native speaker. The 'kitchen' thing really got me thinking. Is that a code or something...

    P.

  • The most important thing your son can do is to stop drinking totally. Many people recover when they do this and can live a normal life. I think his Gp is being a bit scaremongering but maybe trying to stop him drinking. X

  • You're probably right there Sammie. I hadn't thought of that.

  • what may have been said was ''if continue as you are 12 months''

    like as been said fresh food, plenty of water, no salt, exercise, and keep your bowels free and regular and of course no booze

  • Hiya,

    The waiting time is pretty normal from my own experience after leaving hospital in January, I saw the consultant in March and the end of May and haven't seen him since. Due back in November.

    In the meantime I did have a further outpatient ultrasound in July (now normal) and a Fibroscan this month as well as a couple of blood tests immediately after leaving hospital and then in March and May.

    Mine was alcohol related Hepatitis and every day whilst in hospital I was told I could die to the point of asking the nurses to tell the consultants not to bother coming to see me and getting my then ex partner in to warn him as we have a child. It was all very confusing as the first consultant had said 1 in 3 die from this but I don't think you'll be one of the ones that don't make it, followed by all sorts of scary comments to the opposite and no amount of me telling them I don't usually drink daily, weekly or even monthly helped.

    I haven't drunk since and I'm not counting days as this is normal for me but for me it's scary as I don't remember going out to buy alcohol in the first place. I have PTSD.

    Removing the cause (alcohol) will greatly help, and whilst all seems to be normal my end in terms of things reversing I am not taking that as a green light to drink so I hope others don't either.

    Try not to be discouraged, I think from personal experience the issue for me is that they haven't looked deeply beyond alcohol... if they had they would know it's triggers and high stress coupled with historic buried things that are the root cause, not my burning desire to get sloshed. I'd rather drink pond water.

    I've had the same battle with CMHT, pretty much dismissed...I have finally found free counselling with a psychotherapist at a women's support centre. I finished working with an alcohol support worker as he felt the same as me, that it wasn't alcohol that was the main issue and never was but whatever the cause alcohol does serious damage, sometimes permanent and I wish it were a controlled substance frankly.

    If you try and buy a pile of boxes of paracetamol you are questioned etc but 3 litres of vodka, no problem.

    Oh and my eyes were the last thing to go back to normal..

    Best wishes,

    Michelle xx

  • Thanks Michelle

  • Hi everyone. Your comments have been encouraging, thank you

  • Keep us posted eh, keeping everything crossed for you all xx

  • Hi, your OP says your son's drinking was in the past which implies he hasn't drunk for a while. I wonder if the GP has checked for haemochromatosis (iron overload)? It causes cirrhosis and GPs often assume it's alcohol causing the problem. It's a very simple inexpensive blood test to rule out the possibility.

  • Thanks Hdon

    My Son has in the past been checked for haemochromatosis as my Wife does have this disease which was diagnosed many years ago.. However when he was checked over 18 months ago there was no sign of it but we will of course advise the consultant when we see one in November.

    What I meant about his drinking in the past was heavy drinking of spirits caused by the break up of his marriage. He has been dry of spirits for about 3 months now but still has an occasional Guniness

    Thanks for the comments and advice

  • Best wishes to all of you.My husband has cirrohsis (i can never spell that word correct!!!

    He is having problems with his eyesight, in fact his vision is very bad. Has anybody experienced the same. He will be having surgery soon to remove about 5/6 teeths and

    I am very worried. Love this forum and get great support from it. Regards to all

  • My vision was awful when on steroids but equally my eyes had degenerated anyway with age so I was wearing the wrong prescription.

  • Hi Ireland 46

    As usual the group have given a lot of good advice.

    Mental health problems are a real issue. Without the right support and understanding it can create a lot of additional problems for everyone. It is important for your son to get some help if he is still struggling with this.

    There may be a local support group. Sometimes the help can come from groups who support people with alcohol related issues. No matter how strong we try to be, anyone could hit overload, in terms of mental health issues, my crutch was comfort food. Until I could get my head around the issues I was dealing with I couldn't face sorting out my diet. Seeing the scales going the wrong way further damaged my perception of myself and my self-worth. Feeling the pressure to always have to meet the expectations I believed were being placed on me by others made things worse.

    Getting my personal image into perspective, helped me to feel stronger and more able to face my need to eat healthier. I was lucky I haven't drunk alcohol for decades. Getting my work life balance is harder as I really love the work I do, and being realistic about what is achievable was an issue of mine, I will be honest I'm still having to work on.

    Eating healthily, including understanding portions and balance of each food groups you need is really important. Watching what you drink e.g. forget the alcohol is crucial. Being careful and getting guidance about potential problems with supplements is also essential. Not keen on the flavour but good old fashioned water, is usually good for you. I say usually because you may have to watch for sodium in some bottled water, I have recently learned. Flavoured waters can also be tricky. I

    Another important ingredient is quality resting and sleep patterns. It gives the body time to help itself.

    Cigarettes, are also not helpful to help the body to help itself.

    Plenty of exercise is good for you. Making sure it is appropriate to your physical abilities is vital.

    The final important ingredient is to remember that you are worthwhile. Loving yourself, your body and having safe fun helps to give living meaning. This helps you to begin accepting the help that is available from friends, family and professionals.

    No one knows how long we are here. The proverbial bus could run any of us over at any time. Take each day at a time. Trying to set a long-term plan can be too daunting. if your son can start moving forward and being proud of each step forward he is making it will help him. He hopefully will feel better in himself and be able to maintain the positive changes in his life.

    I have a fatty liver and a cirrhosis diagnosis. I'm trying to follow the strategy I have given. I take it one day at a time. I certainly plan to be around for some time to come.

    Best wishes for the future for you all, and using the old trekkie Vulcan phrase" Live long and prosper".

    Gx

  • Hi

    Thanks for your comments which are much appreciated

  • No problem it is a long hard journey.

    I had a spell of ptsd. It was 2 years I wouldn't want to go through again. I had had some rough spells on and off before that over the years. Even after the two years it was hard and I kept forgetting that I need to care about me as well as others. It started around the time I also had a spinal compression.

    Then 3 years ago, I had an incomplete spinal cord injury. Sorted out the compression at least. I'm lucky I can still walk a bit and I know many are not so lucky.

    I still didn't really love me enough to really care about me. It was my need to be there for others that was my driving force, not valuing me for myself.

    It took the fatty liver and cirrhosis diagnosis this year (August) to make me finally accept that if I don't love me I can't be there for the ones I love and care for. 59 years in the learning.

    Wouldn't mind, but in my line of work I keep reminding people that they need to look after themselves if they want to help others. Which shows how stupid I was because I knew I needed to care about me and respect my body and ignored my own advice. It sometimes feels with the tiredness and the injury, that my body has a mind of its own. I can imagine it physically switching off my control button and saying now you will behave Mrs.

    Everyone has their triggers which will cause them difficulties, we are not here to judge how they are handled. Being able to seek and receive help and move on is hard and that is where we all need support and encouragement.

    Your being there for your son is important. Even if it doesn't always feel that you are doing anything.

    Thinking of you.

    Gx

  • Lovely post G xx

  • I am sorry to hear what your son is going through. I have recently been advised that I have reflectivity in my liver in line with early cirrhosis and my appointment with the specialist wasn't until end of Nov. I called the appointment line EVERYDAY for cancellations, fortunately, I got one and had my appointment on Sept 19th, 2 and half months earlier than the original apt. I wold recommend calling everyday for cancellations. I wish you all the best and hope you get that answers you need and an earlier appointment. Lots of love. xxx

  • Hi

    Good idea, I also phoned my liver nurse to say how rough I was feeling and she managed to get my consultant appointment brought forward from January to October 17th which I thought was good. Got fibroscan on Tuesday. Everyone take care. Lots if love Lynne xxxx

  • Hi my cirrhosis diagnosis was a by product of an internal bleed. I was told 15 minutes from discharge on a ward round by a consultant in front of a group of medical students. "you have cirrhosis, if you do not stop drinking you will not be eligible for a transplant, like George Best." I went home dazed and confused. Since then the NHS has been excellent, lots of tests and staff explaining some of the results. I too have a gap of 8 weeks between initial diagnosis and next consultation, this is normal so they can see the difference in bloods and liver function due to changes in life style.

    Tim

  • How are you feeling now?

  • Determined to get as well as possible. Diet and teetotal going well. biggest issue is lack of energy. I am tired after a 2 hour walk and basically sleep all the next day. Hopefully this will change as transfusion works its way through and liver function improves. Consultant meeting 20/10/17 so lots of questions being written down so I do not miss anything!

    Tim

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