Totally confused

Hi there, and thanks so much for a brilliant site. Although I don't know much about Liver disease, what I have learnt comes from you wonderful caring and sharing folk. Just over 12 months ago during a routine blood test I was found to be very anaemic, which sparked off a lot of different tests. Finally it was found that I have an enlarged Liver and spleen and Varices in my oesophagus. I was told I has Cirrhosis and needed a biopsy to find out the cause and rule out auto immune hepatitis. I had the biopsy in June and had a letter confirming cirrhosis, likely to be fatty liver induced, and the consultant would see me in the near future. My GP advised me to watch my diet and take more exercise. I was put on Propanolol for the varices. My appointment came through for mid Nov, but was cancelled until Late December. I was very disappointed as the betablocker seems to be causing Asthma, shortness of breath wheezing and coughing and my GP has halved the dose until I see the specialist. In the meantime I am going on a long flight to South Africa then a cruise, ending up in Rio.

Do any of you have any advice for me? I have not been told to abstain from alcohol, and I like a glass of wine with dinner. If necessary I will stop. I will try to get more exercise on the ship. I am bothered by the varices I must admit, especially as I am B Rhes Neg. Anything I can do to avoid them bleeding?

By the way I am female, 68 and live in the UK.

Thank you in anticipation, I am hungry for knowledge, and trying to avoid googling everything!

16 Replies

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  • Hello Moorhanks, a couple of things in your post had me a little concerned.

    I wonder if you are able to get an appointment with your specialist before your holiday because the issue of flying and varices has been raised on here before and I know that some people have previously been advised not to fly longhaul with known varices because of the risk of bleeding. Looking back at the previous post on the subject folks were told to get an endoscopy to check their varices a little before planned flights so that any that are looking risky are treated before flying. Best to ask your specialist about it!

    Also with cirrhosis due to fatty liver I am very surprised you have not been told to abstain from alcohol because asking your severely damaged liver to process the strong toxins in booze is an almost certain way of increasing your liver damage. Yes you need to watch your diet and get exercise but I would think you want to think seriously about whether that glass of wine is really necessary because it could really make you even more poorly.

    I have no knowledge of beta blockers, my hubby has never had those, his specialists have treated his by repeated bandings (in the last 3 years he's had 42 varices banded).

    I would be very much tempted in your situation to recontact the specialists secretary and try and push for your appointment to be brought forward urgently and before your planned holiday because of the varices etc.

    Wishing you the very best of luck.

    Katie x

  • Thank you Katie

    To avoid worrying myself sick I have tried to take the attitude that as the medical profession don't seem concerned, then perhaps the situation isn't too bad.

    I have been a full time carer for my 94year old Mother for the past 6 years, but have recently had to give in and she is now in a nursing home. So now I have time to try to do something for myself and my health.

    I fly on Monday week so I doubt there is time to do much, but I do have an appointment with my GP next week.

    I really feel I need a holiday.

    Moorhanks

  • Hubby and I can understand the need for your break, he cared for his dad for years before he went into a home. Hubby's illness was put down to depression due to the stresses and anxiety of caring for dad and was never investigated or discovered until he had a massive upper GI bleed due to burst varices and then his advanced cirrhosis was discovered. Hubby's cirrhosis has been put down to being due to an auto-immune cause.

    Look after yourself and your liver.

    All the best to you, Katie x

  • Id say in your best interest to stop drinking full stop as this could be makin your symptoms much worse ,as you say you think it's because of a fatty liver which to be straight with you is not a good thing the advice of the doc to do exercise is fair enough but there not going through it my advice go on a low fat high carb diet that should help n drink as much water as you can do , I hope this helps you goin forward ))

  • Thank you retwos, I shall do as you advise and drink water as much as possible, and look into the diet you recommend.

  • With portal hypertension I would be cautious about drinking too much fluid - my hubby who has cirrhosis, with portal hypertension and varices was put on a strict fluid limit of initially only 1500ml a day - now increased to 2000ml. This was to prevent the formation of ascites due to portal hypertension - he has never had to take a water tablet due to his fluid limit and thankfully has never suffered from fluid build up. Just another thing to watch for.

    Katie xx

  • Katie's advice is pretty good.

    I don't think you'll benefit from drinking excessive water. There is this perception that water is "cleansing" and will somehow go around your body and flush toxins out.

    The reality is that if you were able to dilute your blood with water at will you'd drop dead - blood is maintained within strict parameters to allow reactions to take place - including osmosis. So your body uses as much water as it needs for hydration of cells and maintaining the blood and the rest passes straight through.

    As for diet, there are leaflets on this site about what is good, generally you know what a healthy diet looks like. Michael Pollen put it quite well a while ago - ""Eat food, not too much, mostly plants.",to which I would add - "with lots of colours, lentils and some fish" and you can't go far wrong.

    britishlivertrust.org.uk/li...

    Cheers.

  • Hello,

    As others have said, stop drinking immediately. No ifs, buts or excuses, no "occasional glass won't kill me". Stop now, stop permanently. It's hard I know but you have no option - if you have cirrhosis you must preserve as many liver cells as you can. You cannot drink anymore.

    I don't mean to sound melodramatic but the reason is that alcohol is toxic directly to liver cells and will also exacerbate the fat infiltration of the liver.

    As you have fatty liver disease, any steps you can take now to get fitter and eat a healthy diet (lots of veg,salads, lentils, pulses, beans, fish, meat but not to excess) preferably made at home with the addition of less salt the better off you will be. Be wary of fad diets telling you eat a lot of this or abstain from eating that - they may not be good for you. Be careful of smoothies too - fruit and veg are good for you - but when you juice them up they effectively act like sugar as they digest very quickly and the carbohydrates are processed very quickly into glucose and hit your bloodstream with a spike. Whole fruit and veg take time to digest and the cell walls contain soluble fibre which is good for you and slows the glucose spike.

    You should start to get used to eating less salt now - the taste for salt is something we acquire early on in life and it takes about 3-4 weeks to get used to eating less - so you will get used to it. When talking about salt the main culprit is actually sodium. Table salt is about 40% sodium, also beware of the sodium or salt content of foods you buy.

    The varices are caused by the blood flow through the liver. I don't think there's much you can do to affect them other than the things you can do to help your liver recover a bit - exercising and eating well. It looks like your doc has decided beta blockers will help take the pressure off also.

    In your circumstances it would be prudent to check with your GP and the consultant about your travel plans - in case they have any comments or think it would be advisable to change your medication.

    Hope that helps a bit. Well done for avoiding googling - it can be useful but the information is blunt and unfiltered so it can scare you out of your wits unnecessarily until you understand and appreciate the fine distinctions necessary when dealing with an incredibly complex organ.

    Best wishes.

  • Wow, this is brilliant, I have had my eyes opened by all your informative replies! I will stop the alcohol, shouldn't be too difficult as I usually only have one or at the most on 2 days a week. Thank you for sharing x

  • Can't add to what the others have said except have you got adequate travel insurance should anything happen to you on the holiday. Declaring liver disease and cirrhosis can affect the insurance significantly and you don't want to find you don't have adequate cover. Also if you are taking medication with you, have it in your hand luggage and take the boxes and the prescription if possible. I confess to being too scared to fly or travel abroad now, so well done you and have a nice holiday.

  • Trying to sort this, though not easy. My bank which usually insures me will do so, but not cover anything to do with my liver or varices!

    Thank you x

  • You're right it's not easy to get travel insurance if you have cirrhosis. If you email the Brish Liver Trust I think they have a number of companies worth contacting. I don't recommend traveling without cover when going such a long way and with your current diagnosis. Good luck.

  • I have pbc,,, and autoimmune disease from this,, it s all new to me but I know that I would rather try and keep my liver healthy for as long as I can,,, the alcohol Yes it's nice to drink it but is it really worth it?? You can have non alcohol cocktail 🍸 on holiday ;),, it won't taste the same but at least you won't feel any difference :),,, 30 min fast walk daily is plenty to start with, I'm totally gone gluten free too, and reduce meat intake to help liver to digest too,, think of this as a new project,, a new healthy body with a positive attitude is a key to a longer life,, enjoy your holiday xx

  • Good for you Anne-laure. That's the attitude to have to give your liver lots of TLC!!

  • Thanks for your inspirational message. I will let you know how I get on. X

  • Enjoy,,, your welcome hun xx

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