What is the way forward?

[Caroll0605]

Hi all, I have only posted once before but all the answers and help I received were amazing. I support my husband who has decompensated cirrhosis - non alcoholic, probably caused by loads of prescription meds he had to take for ulcerative colitis. So, over the last 18 months to 2 years he has had most, probably all of the symptoms of decompensated cirrhosis, not all at the same time. Has had three major bleeds, 18 pints of blood all from the stomach, and has hepatic encephalopathy, managed reasonably well. He is suffering from the altered sleep pattern at the moment, can’t sleep at night, sleeps during the day. will he always be like this, or, like some of the other symptoms, will it come and go? Also, I am finding it hard to try and get any info on how this condition will develop, I.e. what signs should I look for to ensure I get the right help? We take each day as it comes, but I still work full time and I try to be as prepared as I can be for what the future might bring me. Sorry it’s a bit long, thought it might help. Thank you in advance for any help.

Carol

[POSITIVEMUM3]

Hi carol

I too look after my husband who has decompensated cirrhosis. He has had loads of symptoms and sleep is an issue but he has had says where it is slowly improving. He has an issue with sore hot itchy hands which keeps him awake so that doesn't help. Our docs said to try keeping occupied in the day to help sleep at night and he tries buy the need is sometime overwhelming. He is yet to return to work which might help. Also if got HE even mild they want to sleep a lot so we were told to up his lactulose a little and I think it did help.

Our son who's 21 has Crohn's so I know how tough UC will have been too.

Feel free to message me and keep asking on here as everyone is amazing

Karen

[Caroll0605 in reply to POSITIVEMUM3]

Hi Karen, thank you for your reply, sorry you too have to deal with similar situations. My husband is always cold (I have to hide our central heating thermostat).

I did not now that the lactulose could be increased! Thinking about it I guess there is no reason why not as it is not really a medication. I have missed the nurses now but will ring on Monday and ask some questions.

You too have a lot to deal with, with your husband and son. I am not an expert with any of it, but if I can help just message me. It is nice just to sound off with like minded people.

Have as good a weekend as you can with all that is going on in the world.

Carol

[POSITIVEMUM3 in reply to Caroll0605]

My husband was also very cold but that has settled a bit unless he's tired which is a lot. He's has ascites oedema (controlled by meds) had two drains itchy jaundice etc but done what he was told and is more stable and doc says he should be able to avoid transplant so there is hope.

You take care in this crazy world and stay in as much as possible so you don't bring virus back to him

Karen xx

[Kristian]

Sounds like he should be at the stage where he can be assessed for transplant. Has this been discussed by your husband's medical team or is this not an option?

[Caroll0605 in reply to Kristian]

Hi Kristian

Thanks for your reply we were advised that he was not a candidate. I believe that this is because of all of his other health issues.

[Kristian in reply to Caroll0605]

Ok, sorry to hear. Sending you all my best wishes instead then.

[Splodge60]

Because of Coronavirus, any appointments are being either cancelled, switched to phone calls or requiring immediate action. Sounds like he might be in a similar position as myself????? See my profile.

May I suggest you ring the BLT nurses on the helpline sometime today and ask for their advice. They’ve been really helpful to me. Just to add one point - they are being ‘over-run’ with Coronavirus questions but they really can only deal with liver stuff so try and stick to that, as your query is definitely liver related. They normally close at 3pm but I’m not sure now, with all that is going on xxx

[Caroll0605 in reply to Splodge60]

Hi Splodge60

Gosh!

I can relate to some parts of your story, with my husbands. I took the call yesterday from the consultant at the hospital and I guess it lasted 2 minutes. How’s he doing since he was here last week, oh good, I’ll arrange an appointment for two months, we’ll see. I don’t like knocking the consultants, but I do feel something needs to change in the care of people with this horrendous disease and their carers.

Our doctors surgery has just merged with another and it has been an absolute shambles, understatement.

I have taken a lot from your story and will definitely ring the BLT nurses on Monday.

Thank you

Carol

[Hidden]

Hello,

Glad to hear you find the forum useful.

I don't know whether you have had a chance to look at the information on our website with regard to cirrhosis and hepatic encephalopathy. Just in case you haven't, here are the links:

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in...

The helpline number is 0800 652 7330

Please make sure that you take good care of yourself, this is a difficult situation for you to be in.

regards,

Gill

[Caroll0605 in reply to Hidden]

Thanks Gill

I shall be calling on Monday.

Carol