I'm new here...

[Kayben21]

I've just joined, new to all this, and suspect I may have questions or seek support going forward. My partner was taken suddenly very ill last month and we are currently going through further investigations. From what has happened, I believe he has cirrhosis, and HE as a complication. He is due to have a fibrosis scan in a couple of weeks which I understand will help determine how bad things are.... and then I'm not sure. Trying to hold it all together at the moment has been, and is very hard. Taking it one day at a time.

[h0b0]

Sorry to hear this but you have come to the right place. I joined in 2016 & it was a god send for me. Any questions that can be answered will be but more importantly the support here is AMAZING. xx

[Kayben21 in reply to h0b0]

Thank you, and that gives me a great deal of encouragement that I'm in the right place for support.

[AyrshireK]

Welcome Kayben, sorry to hear of your partners condition. Hopefully we'll be able to support you going forward. I too am the partner (wife) of a chap with cirrhosis (his due to auto immune hepatitis). Hubby was rushed into hospital in April 2012 with decompensated symptoms of cirrhosis - massive bleed from varices.

Both still here all these years later.

Have a look at the BLT main site on cirrhosis plus the page about the charter regarding what care you should expect. The more you can learn the more you can make sure appropriate level of care is being met and you know what to look out for (and questions to ask).

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/li...

Katie

[Kayben21 in reply to AyrshireK]

Thank you so much Katie

[Huggy7614]

Hey Kayben,

Welcome. You’ll have loads going through your heads in the forthcoming weeks and months, just at the same time this bleedin bug is being a pest!! Just keep positive. There is plenty of support out there.

You’ll get lots of information, a lot you may not get to grips with to start with, but trust me it all comes together. Just ask about any queries you have. We’ve all done exactly the same.

Important as part of any process will be to watch his diet, and obviously alcohol intake. Booze in any form at this time will do lots of harm, and salt should be avoided wherever possible. Do consider getting dietary advice, and have a pen and paper handy at any upcoming appointments.

Good luck to you both. Andy

[Kayben21 in reply to Huggy7614]

Thank you for your message Andy which is of great help and support.

Sadly I know alcohol is the root cause of this, and doing my best to talk calmly, openly and honestly with my partner. I've started downloading some of the help guides on this site and we have gone through some of them together in the hope it will start sinking in the seriousness of this illness. The one good thing about the 'bug' is that alcohol is now far less accessible!

He had become quite malnourished and weak, and since coming home from hospital he has got a better appetite and I'm making sure he is eating regularly and healthily, grazing in between. Its a bit strange as he has always been the main 'chef' at home, so i'm trying to be as organised as I can in meal planning and getting my culinary skills back up to speed! Thank you for the advice about salt too, and pen and paper for upcoming appointments.

So helpful Andy, thank you again.

Michelle

[davianne]

Hi Kayben, and firstly, welcome to our friendly forum.

I'm sorry to hear of your partners cirrhosis diagnosis, but you will find a lot of support and knowledge here, from fellow cirrhosis sufferers.

I was diagnosed nearly 4 years ago with F4 cirrhosis, so I know what a worrying shock it must be to you both. HE is a dreadful symptom of cirrhosis, but can be managed with meds. The fibroscan will show the stage of cirrhosis, and your hepatologist should organise a care plan for your partner.

Just ask away if you have any concerns, as there's lots of first hand experience here to help you both through it.

David

[Kayben21 in reply to davianne]

Hello David, thank you for your welcoming message and support.

My partner is very intelligent with a very sharp mind, so it has been a shock and very distressing to find him suddenly unable to think clearly about the immediate short term things, long term memory is still sharp. Very frightening to wonder if this will be permanent. After coming out of hospital, before the lock down took place, he was getting hold of alcohol, and the HE became worse again. Since the lock down his confusion is becoming less, which has given me back some positive hope... but I also know he is the only one that can decide to stop drinking to stop any further damage. He is taking his meds regularly and eating well.

Fibroscan is week after next, so that I think will be a significant point of this journey.

Thank you again David

Michelle

[davianne in reply to Kayben21]

Hi Michelle,

I hope that like me, when I got the " you've got end stage cirrhosis", which is the way I was told after my fibroscan, it shocked me into stopping drinking immediately, and I've never touched it since. It's the ONLY way to stop his liver from being damaged further. I still get small episodes of HE, but nowhere near as bad as it was, but as I am 72 years old, so I call them senior moments 😊, and yes, with me it's mostly short term memory that's affected, not long term.

I will keep everything crossed for his Fibroscan for a good result 🤞🤞🤞

Take Care,

David

[Hidden]

Hi and welcome,

We have a lot of useful information on our website:

britishlivertrust.org.uk/in...

We also have a nurse-led helpline service you can call if you need a chat.

We hope you find our forum a supportive place to visit. Our lovely members have already shown their support in their replies to your post

Best wishes

Trust1

[Kayben21 in reply to Hidden]

Thank you for your message. I've only been a member for less than a day, and already the messages I've received from members have been hugely helpful, massively supportive and informative.

Many thanks

Michelle

[Hidden in reply to Kayben21]

We are so pleased Michelle. You are not alone

[Hidden]

Hi Kayben,

You really have come to the right place. Had it not been for the support I've received here, I doubt I would be 'coping at all.' The support here, is nothing short of totally amazing. So may I say...welcome x

[Kayben21 in reply to Hidden]

Thank you so much for another wonderful supportive welcome message, I’m so glad I found this space.

Michelle x

[ThreeSmiles]

Hi Michelle

A very belated welcome from me as well.

So you are a carer for your husband - I mean that in a nice way - I have said on here several times that I think the situation for the carer is a much harder one than for the actual patient. My rationale is several fold but the one that sticks out for me is that the patient always knows exactly how they feel in themselves - bad and good - whilst the carer has to spend the whole time worrying how the patient is - not really knowing whether they’re telling the truth or not, and presuming the worst.

Probably not said that very well 😕, but I hope you get the gist, sort of..

Wish you both the best and🤞🤞 for reasonably good fibroscan results.

Miles

[Kayben21 in reply to ThreeSmiles]

Hello Miles, thank you for your welcome message. That is a really good insight, one I've not thought about, and you put it really well that I definitely got the gist of it. Thank you so much.

Michelle