Husband very confused

[Bs1524]

Further to my post about being referred for assessment my husband seems very confused, very slow walking and in his movements generally and from not sleeping now sleeping quite a bit. I have left a message on the consultant’s secretary phone and am hoping for a call back. I am reluctant to call GP as the one GP who is great and on the ball with his condition and doesn’t try to palm you off only works Thursday and Friday and I know the others will suggest A&E.

What can they do for this confusion it doesn’t help he gets his new teeth on Friday so his speech is unclear anyway.

[AyrshireK]

These are sadly very typical symptoms of HE and obviously becoming worse. Is he still moving his bowels frequently? 3 - 4 times a day is optimum. What is he eating? Try and cut out any red meat - veggie diet is actually really good for reducing ammonia build up, however, they've obviously deemed him poorly enough for transplant assessment so that's going to be the next step. Not a lot of other treatment available if he's now on Rifaximin and Lactulose.

His specialist would be the best person to call as his symptoms are deteriorating - a GP isn't going to have the necessary expertise. Terrible time for him to be deteriorating but they might be able to bring forward his assessment.

Have you seen the British Liver Trust page on HE with all the guidance there?

britishlivertrust.org.uk/in...

Thoughts with you both.

Katie

[Bs1524 in reply to AyrshireK]

Sorry my battery died on me. I have spoke. To the secretary and she confirmed for me to increase his Spirolactone . There was some confusion at the consultation because he said to double his dose but when we got the script from the pharmacy they were 100mg tablets and to have two daily so 200mg. I think he thought he was on 50mg tablets but he is on 25mg.

[AyrshireK in reply to Bs1524]

Puzzled by the doubling of spiro dose as it's a water tablet and nothing to do with HE.

[Bs1524 in reply to AyrshireK]

My husband is looking like a ball right now the confusion came on Saturday.

[AyrshireK in reply to Bs1524]

So he's got ascites, oedema as well then I take it with you saying he's like a ball. Hopefully you get his date for assessment a.s.a.p.

Katie

[Bs1524 in reply to AyrshireK]

I am crossing everything but the situation with Coronavirus May hinder things.☹️

[Purple-Qi31 in reply to AyrshireK]

Agree. When my Dad was confused, they told us to go up on his lactulose until he was back to normal. Then back to normal dose. I hope you have reverified with your specialist.

I really feel for you, honey.

[mattymoo33]

Hi lovely. I had several episodes of HE earlier this year. Slurred speech, slow movement, forgetfulness and confusion are typical, it also made me uncharacteristically violent. Lactulose is the best to get rid of excess toxins (ammonia) in the blood. If in doubt, take him to a&e as HE is serious. I was told to increase Lactulose.

I hope you get the help your husband needs. xxx

[Bs1524 in reply to mattymoo33]

He seems to have come round a bit he realises he lost a day yesterday. I am going to encourage he ups his lactulose.

Thanks for your advice I am nervous of going to A&E given the current situation and Lincoln Hospital is so overworked on a good day. A friend was taken to A&E and over 9 hours later was still waiting and she had heart problems ☹️

[Hidden in reply to Bs1524]

I am not giving medical advice only my personal experience, but in my case it was increase lactose (a lot)that made me less confused

Thinking of you

[Bs1524 in reply to Hidden]

Thanks David, I,have encouraged him to increase his lactulose and he seems a little less confused.

[Hidden in reply to Bs1524]

I took a lot of convincing, I took a measure that came with the bottle 4 time a day when i got confused. Only my experience not a doctor!

[Bs1524 in reply to Hidden]

I do appreciate your sharing your experience. It does seem that these things go in a cycle he has a day or two where he is not too bad then he gets worse and then round he goes again.

[Dusty1710]

Hello, I have been reading through your post and I feel like I’m going through the same as you. My husband was diagnosed with cirrhosis 6 months ago, due to alcohol over the years ( regular drinker, not heavy?) Since then he has been in hospital 4 times with Ascites, HRS, Oedema, he sleeps all the time and gets so down. Very weak and has no muscle strength. Waiting for assessment at the Royal free for transplant but with all this going on with the CV VIRUS it’s so scary and I am so worried when he will get an appointment, he also has a child Pugh score of 13. I hope you don’t mind me writing to you, he’s only 51 and I feel like our life has been turned upside down.

[Bs1524 in reply to Dusty1710]

It really is a scary time and it’s no wonder you feel that your world is turned on it’s head, it has been. I can so relate to your worry about the appointment I go between wanting the appointment, worrying it won’t happen, worrying if he isn’t put on the list and worrying if he is put on the list.

It is so hard to stand by and see how poorly they are. As everyone has told me you must take care of yourself.

Please feel free to contact me anytime

Pam x

[Dusty1710 in reply to Bs1524]

Thank you Pam, yes all so worrying and watching him just get so poorly breaks my heart. Thank you for your positive message and hoping we have news of our appointments soon, so we can start to move forward in this very worrying journey, I can’t believe 6 months ago we were living a relatively normal life. Take care and thank you Elaine xx

[Bs1524]

Hi Elaine

Life can really change in the blink of an eye it certainly knows how to make you feel small and vulnerable.