I am really concerned: About my husband... - British Liver Trust

British Liver Trust
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I am really concerned


About my husband I have posted about his confusion and spoke to his doctor”s surgery yesterday over the phone and was advised to up his lactulose. They also told me that he should have received a letter to self isolate for three months.

I was woken by him at four this morning he was on the floor next to the bed he had sat down and landed on my leg and fell to the floor I couldn’t understand what he was saying it doesn’t help he didn’t have his teeth in we are supposed to get his new teeth Friday but that may be cancelled now. Anyway he insisted in going downstairs I checked on him and he had decided to make some porridge and insisted he was alright I came back up to bed as I have work to do from home but it is work. About and hour later I am woken by a noise and go down to find him on the floor between us he got back up.

What shall,ai do I could try the consultants secretary again the doctor only had the first lletter from the consultant so did know about him being referred he did manage to see the results of a blood tests from last Thursday and said well,his bilirubin is ok??? He also said well the consultant mentioned some confusion ai said this is way beyond how he was and Imsiggested could it be a uti also considering his spirolactone has been increased from 50mg to 200mg he isa peeing much more.

I am so worried so for the long post.

15 Replies


I'm so sorry you are having such a hard time, you are both in my thoughts and prayers. this must be very upsetting. I do think you should phone his consultant's secretary this morning. You need help and advice as to what to do. They might ask him to come in. I'm sorry I can't think of anything else but I'm sure someone will be along shortly with some better advice. Pm me anytime. Thinking of you both. Love and hugs to you both Lynne xxxx

Trust8British Liver Trust

Morning Bs1524

I am sorry to hear about your husband's condition.

No one is medically qualified on the forum and unable to give specific advice, so as you have suggested, it would be advisable to contact your husband's consultant .

Take care and very best wishes.


morning so sorry to read this about your husband upping the lactulose will help him for a bit but this sounds like he’s suffering with the HE with the confusion and the way he’s falling down please make the phone call to his consultant they may have to take him into hospital to sort him out.

I had this several times and was always admitted to clear the toxins

Jas your husband been listed for transplant?

I wish you all the best please keep us updated on how’s things go and look after yourself to 💚


He is being referred to the transplant assessment team we are waiting for the appointment. Meanwhile I have spoken to the secretary who is trying to get a message to the consultant and she he may well refer us back to the GP who didn’t really want to know.

Does sound like HE, I assume he would need to be admitted as an in patient via A & E, as I’m sure you know, Gastro appointments are generally run on a bi annual basis for us lucky one’s assigned to a Transplant Centre.

in reply to tommyc

We haven got that far he is being referred to the assessment team. I havheard back from consultant’s secretary and,the gp didn’t really want to know. I am not medical,y trained but feel,it is being left to my judgement even down to how much law the has. This cannot be right

Hiya honey. It does sound as though an increase in spironolactone is doing more harm than good. Each time I have had HE, I have needed to take A LOT of lactulose to clear toxins my liver isn't able to.

You cannot keep waiting and need to know if it is HE or something else. A blood test will help.

Take care, 🤗🤗

in reply to mattymoo33

Thanks I am stunned that the GP isn’t interested he looked at some 6 week old notes to say the consultant mentioned some slurring of speech and slowness I said this is way beyond that and all he said is increase the Lactulose. His legs are so swollen and couple with needing two new knees he can barely walk I am terrified he will fall downstairs. I know if the doctor he usually sees had been in she would have done way more then tell me to increase Lactulose.

in reply to Bs1524

Don't wait my love, trust your gut feeling and get him to hospital. If it is HE, he will probably argue (I know I did), that he is fine. Please don't wait 🤗

I am just waiting on the GP calling me I would like him to call Grantham for me at least there his Heptologist attends update GP coming out at lunchtime

Hi my husband was like that in December. Always falling and Christmas conveniently passed him by. By increasing the Lactulose and spirolantone worked and he improved in the New Year.

When i was like that with HE it was always a trip to A&E.

Luckily i did not know what they did, but i believe it required a complete clear out!

My GP thought i had swine flue, my advice would be to get to a hospital ASAP, get GP to refer him to one of the main liver hospitals if possible, I live in Northampton and being referred to Birmingham QEH, saved my life

Remember i know nothing, just relating my experience

Stick to your guns, I would argue like mad and not want to go, its all part of the HE

Thinking of you


Hi, I agree with David and others, he needs to be hospitalised to deal with his HE, for his own safety. If your GP is not helpful in getting him admitted, then you should get him to A&E, preferably by ambulance. I know the NHS is very stretched just now with covid-19, but he needs to be assessed and his HE brought under control.


Agree with others about getting him to A&E, if his HE symptoms are so bad and fluid build up too and knowing he is awaiting t/p assessment they 'might' (would have in pre-covid 19 days) transfer him to t/p hospital.

Best wishes, Katie

in reply to AyrshireK


Well since I posted and husband crashed out asleep I spoke to the doctor and he said he would come out. Doctor duly arrives and we wake up husband who can now get his slippers on yesterday he couldn’t. Chest, heart, lungs BP all good doctor checks his tummy and says doesn’t seem to be a lot of fluid when he last had a scan there wasn’t much fluid (that wad before Christmas) he suggested I reduce the Spirolactone down to 100mg?? He didn’t want to send him to hospital as the risk of infection is to great. I must admit he does seem brighter today but now worried about changing the Spirolactone dose because he hashtag been peeing as much as I thought he would going from 50mg to 200mg.

Still not heard from consultant.

I do feel reassured now but the Doctor did say if he had come out yesterday he would have sent him to hospital, confused? I am

Thanks everyone I promise you I have not been overreacting oh and one last thing the doctor said well it shows referring him for transplant assessment is the right thing er well yes.

Pam x

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