After an eight day in hospital for HE my whole body has swollen can hardly walk was on lasix with another water pill beginning with p they stopped them in hospital saying they were up for review only received them back when I left hospital I believe the only person to help me know is my heptologist please has anyone got any advice until I see him next month. Annette wishing you all well

53 Replies

  • I would have thought they should be sending you to Kings a.s.a.p. rather than waiting another month. You are now definitely displaying serious (i'd go so far as to suggest end stage symptoms sadly) and as you are already under Kings you should be there by now. Don't wait another month Annette - either go through GP and get them to phone your Kings hepatologist or if you are able phone the consultants secretary tomorrow. They seriously need to be looking at you with a possible view to transplant.

    Please push for this Annette, your treatment to date seems to be very disjointed when you have deteriorated to the level you are at now.

    Keeping my fingers crossed for you.

    Love from Katie xx

  • Thanks Katie they have told me here in Kent to try water pills I have emailed my heptologist sec twice and my daughter has to I have appointments at kings 11thjuly don't know what to do can't even walk thanks to the hospital here I was keptl in with HE and was let out in this terrible state

  • My hubby still sees his consultant locally and also a liver specialist at Edinburgh - thankfully he hasn't had to be re-admitted to hospital but what we've been told is that 'should' he be admitted to local hospital they would always take their lead from Edinburgh (they are now his lead doctors) and even perhaps transfer him through to Edinburgh. Local doctor only sees us to be 'kept in the loop' incase of this possibility so he knows what the most recent situation is.

    You can't wait until 11th July in this situation - it isn't just uncomfortable for you it is actually dangerous and it seems rediculous that Kent have sent you home rather than liasing with Kings or transferring you up there. I'd try the Specialists Secretary again today (by phone if you can) and request to get seen a.s.a.p. If it is so bad I wouldn't think twice about presenting at Kings A&E rather than local because you are being fobbed off and it's about time some serious intervention was done in your case because through the time we've been communicating you've definitely deteriorated quite significantly.

    Thoughts are with you, Katie xx

  • Thanks ks Katie I have to take water pills for a week according to AE in Kent I have left message may have got it wrong though whete is it that they help you fill in pip forms got it last June they have sent me another form I need someone to visit me and help me to feel it in as can't walk properly outside yet hope you and hubby ok

  • Hi Annette, either your local Citizens Advice Bureau (if there is still one in your area) or the Welfare Rights Officer at your local council should be able to help you complete your PIP form.

    Still don't like the fact Kings arn't bringing your appointment forward when you are so obviously poorly.

    Hubby and I are at Edinburgh - consutation and the dreaded endoscopy tomorrow so already getting a bit tense about that.

    Rooting for you as always, Katie xx

  • Thank you Katie I wish your hubby all the best with endoscopy which I also dread yes message kings so much secretary did not reply once so proffesser O'Grady may not even know trying to get through to him thank you for information on filling in the form I just can't think clearly at the moment wishing you both the best. Annette x

  • Hi Annette,

    Katie is right.

    After reading your post I am worried for you 💙

    Please, please dont wait for a month to go by.


  • Oh you poor thing Ascites isn't pleasant you can't possibly wait a month nor should you! Your water tabs will start working prob but it's a slow process and in the meantime you need a drain to ease your discomfort and you need to be monitored. If you have a GP worth his salt get an app ASAP if not definately ring your consultant to organise a drain. Failing that A&E would be my next port of call. Good luck.

  • Hi Annette. I'd agree with Katie too. You shouldn't be waiting a month. I can't believe the hospital discharged you like that without referring to your consultant. Get in touch with Kings right away. I hope you get the attention you need. Adele

  • Before my transplant I used to get ascites very regular needing to be drained on average about every 10 days, get in touch with your GP or your consultant at the hospital and explain your discomfort. Good luck to you.

  • Thanks million been trying since 10am still can't get through I don't know what to do Annette

  • Keep trying Annette they cant ignore you forever, let them also know the stress this is causing you. All the best, I wish you luck.

  • Turn up on the door step and refuse to move it has worked for us fingers crossed for you x

  • Sadly the only sure entry into the correct place is by presenting at A & E. Always worked for me, although you do feel guilty about thinking you're over-reacting. However, they will do your bloods and get a hepatologist to review you. Every time I did it the wait was usually quite short and it was straight into majors and medical attention very quickly. Usually they said I had done the right thing and I would be admitted.

  • This is why hubby is still with us we went to A n E and refused to budge he was admitted for 5 days that's why he is still alive x

  • i agree; if no joy; go back to A & E x

  • Dear Annette,

    The above advice is brilliant for you - you must go to a and e as they will be able to ease some of the symptoms. Everytime you present yourself like this brings the focus and attention of all involved on you hence making your case heard.

    Keep us all updated.


  • Of course pear

  • Annete, so sorry to hear you have been so unwell. Just to say I agree with all the above posts. Keep fighting your corner, don't wait for things to happen, push for them. If you feel too unwell to deal with this, then ask your daughter to make calls for you.

    Thinking of you, and wishing you well.

    E x

  • Thank you as hard as it is I am pushing nothing come of it yet except I have to ring a place called medoc to be assessed for a drain GP told me to do it when his surgery closed

  • I agree if you don't fight for your self no one else will.

  • Annette - it is very important that you go to a and e at Kings - don't wait for an appointment - please!


  • Thanks leading thing is I live in Kent was assessed for drain and told to try water tabs first at king's I have appointment on the 11 th July to see my heptologist there's nothing I can do can't even walk at the moment

  • I have no choice but really am ill

  • Hi, I am so sorry you are in such physical distress right now. It sounds very difficult. I hope you have someone helping you. Best wishes.

  • Hi just seen your post. Please please go to A and E. Call an ambulance and go. You or your daughter Contact Leeds once you are settled at the hospital (Contact PALs at your local hospital ASAP too) liver disease is so cruel. GP is wrong he could of sent u too Medical Assessment Unit orAmbulatory care. Please go if you haven't already. Xxxx

  • Dear Annette,

    You must call an ambulance and ask to be taken to kings - that is your liver centre - please do not delay any further - they will be able to drain you at kings and this will ease some of this dreadful discomfort... If you do not want to call an ambulance then arrange for a taxi to take you there...

    The secretary/staff will not be able to advise you further as you need immediate draining - please go to a and e at Kings...

    I've been worrying about you all day...


  • Thanks pear ambulance won't take me from Kent to London and cab costs £85 still trying to rack my brains what to do. Annette

  • Hi Maybe if you call an ambulance to take you to your local hospital than they will transfer you to Kings if necessary.

    Best wishes I hope you get sorted soon x

  • If you find yourself in this situation in the future regarding worrying about the cost of a taxi and you cant get anybody to take you to the liver unit at Kings - if at that time I'm around and free I would be happy to drive you.

  • Thank you so much.your so kind I can't stop crying I will never forget this my daughter taking me on Monday once again thank k you so much Annette

  • If the need arises or you just need somebody to talk to, you can email

    I offered because I went through from start to finish ( a positive finish with the transplant at the Royal Free ) everything that liver failure can throw at you. So I know how hard it can be. The transplant was only in March but tomorrow we are both going on a sponsored walk for the Royal Free charity (5K) .


  • Lucy really happy all went well for you with transplant Annette

  • hi there..can you get a drain? They stopped my water pills also, but that is because they were no longer working. They are not offering me any with this new liver I have.

    If your belly is distended and hard or firmer than normal, call your heptologist and ask for a drain. I get them and they offer tremendous relief..they ALSO help with HE. Tremendously.

    Also, if you start to have chest pains..go to the A&E straight away. The fluid can do this.

    As advanced as you are, I'm surprised your not being drained on a regular me, that is just criminal.

    I hear that all the time on here..people desperate to get a drain and cannot get one, or have to wait 3 weeks. In that time you could have blood vessels bursting and or have a cardiac event. Sorry to sound so dramatic, but it is nothing to mess around with. With your HE, you already know this, poor dear!

    I'm so lucky, at Addenbrookes they have a Nurse specialist and her assistant doing drains everyday. Thank god for that!

    Thinking a good thought for you sweets!


  • Thank you my daughter helping me to get dressed later as can't myself I then have to wait for my GP surgery to close then I am to ring a place called medoc for a doctor to come out and assess me for drain that's what GP told me to do I get the feeling he's passing the buck I'm very scared of HE living by myself as I change very violent not me have no memory of it at all your talk has helped me. Annette

  • Dear Annette,

    It is your right to access care at your named liver centre - the medoc thing is fine if you can wait - but you cannot! The fluid will only build up and end up causing lots of adverse problems which will create more issues for your already overworked organs - which are having to deal with this amount of fluid.

    When you call for an ambulance tell the operator you are under kings care and that they are your named centre also remind them that it is in your right to be taken to your liver centre as these problems are from your liver... If this doesn't work then go to local a and e who should be able to atleast ease some of the fluid and arrange for your transfer to kings.

    Good luck Hun and keep us posted.


  • Oh dear Annette, its so worrying you being alone and suffering like this. I can understand you are scared of the change to your personality HE causes. If no one who knows you is around to explain. Maybe you could write a short note saying if you are acting strangely or aggressively that it is not your usual temperament, then if a Dr or ambulance person comes they will know. Put it in a prominent place in your home, maybe even address it to gp/ nurse/ paramedics. That at least might stop you from worrying about people not realising what's going on.

    Thinking of you, and keeping positive about you getting the help and support you need to get well.

    E x

  • That's a very good idea will write note today

  • Have you tried lying in a bath, the water pressure in that water will affect the water pressure you are holding. It takes 45 minutes but the chemical reaction does occur. I di it for relief. I wish you had more support. I am your age and alone too so I understand how hard this must be on my mentally and physically. When I hit dire straights and I do, every few months, I am overwhelmed trying to figure out how to get my symptoms more stable. Bless you. Good luck.

  • Will definitely try that thanks

  • Dont want to unduly worry you. But, there is always a but ! When I first had ascites it developed into something which is life threatening. I was taken by ambulance when I was almost delirious with pain in the abdomen, directly into resuscitation where they quickly diagnosed Spontaneous Bacterial Peritonitis complicated by sepsis, a known complication of ascites. That was when I first realised how seriously ill I was with a failing liver. I consequently had multiple admissions with HE, but thats another story.

    Don't take any chances with ascites.

    If you experience severe abdominal pain or high temperature combined with ascites, don't waste time with NHS 111, GP or an NHS walk-in-centre. Call 999 and demand an ambulance. If Lucy hadn't insisted on calling an ambulance that night (2 am) I wouldn't have lived to have my transplant and be giving you and anybody else advice regarding this problem.

  • Jim used to wear a diabetic alert bracelet with information in a canister attached. Stating that he was diabetic with end stage liver failure and hepatic encephalopathy. Amazingly the transplant completely resolved the diabetes !

  • That is such an inspiration I to have severe HE getting worse all the time I go into hospital sometimes with mild confusion once in there I get predominantly worse I cannot wait to see my heptologist at the liver hospital i really need help so happy that your husband got his transplant i to want to live. Annette

  • Dear Annette,

    Would you be able to print the posts here and show them to your GP? At least they would be able to see the seriousness of the situation you are in.

    I can understand why you wouldn't want to go to a and e Hun as my husband didn't/doesn't want to go at all... But I really think that getting yourself to a and e at Kings would be the best thing to do...

    Thinking of you,


  • This is only a tablet pear no printer with it

  • Katie forgot my username so can't send you message at the council who are the ones who can come to your home and help you to do PIP forms can't walk out at the moment and to be honest cannot think straight to do these forms thanks Katie x

  • Exactly how are you today on a 0 - 10 scale ?

  • I would say an 8 getting that bit stronger daily walking around house easier can't wait for kings Monday I need answers thank you so much for your concern hope you are as well as possible Annette

  • Not long to Monday - how will you get there - hospital transport ? As you said you don't have a printer, you could just open these postings and show the consultant. It will give a pretty good idea of how you're not coping with your current situation. Hopefully you will be admitted. By the way where in kent is it where you live ?

  • I live in Rochester my friend. Has Monday that's how. I'm getting there by car

  • By the way with Ascites or since I have had it this much I can't eat hardly is that a normal thing that comes with it. Annette

  • Dear Annette,

    Do make sure you take your tablet with you so that you can show them all your posts and replies - this will save on printing...

    Hoping you start to feel better soon...


  • Thank you Pear I will bring it with me my worry is a silly one but to have to walk to the department's I need to at kings on monday is a nightmare and this is all down to Medway hospital in Kent who as you know with held my water tablets just hope my heptologist at kings proffesser O'Grady can help me overcome this or at least organnenise a drain I'm sure I need one. Annette

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