My husband is on the liver transplant list. He has hepatic encephalopathy. Any advice from other carers?

[gorffenaf]

At his best he is able to lead a limited life and at his worst he is unconscious. He is in and out of hospital at least once a fortnight and I am finding it all wearing and worrying.

[Welshcake22]

I sympathise. My partner (sober since Dec 2012) has cirrhosis and HE. Today I feel down, as it is a long hard slog supporting someone with a chronic illness. He was last in hospital with HE in November as he had been taking codeine for back pain. He was in for 10 days and was very ill. It is a horrible condition but the HE makes it worse. For me sometimes it is just seeing him looking tired and ill, even though in the scheme of things he is doing OK at the moment, is no longer housebound and has an appetite as he was wasting away. Next gastro and hepatic consultant appointments in March. It's just trying to stay strong is hard.

[gorffenaf in reply to Welshcake22]

My husband , even at his best , now has a very poor memory and has become physically weak. It is not possible to have a proper conversation because he can't use new information along with the old. He has been admitted to hospital five times since Christmas and fourteen times since this all began in August 2013 It is a long old haul.The reason for each new episode is unknown therefore everything is suspect. Our only hope is a transplant as his quality of life is deteriorating slowly but surely.

[Dorset123]

Hi,

I have NASH and cirrhosis. My wife is brilliant but I can see her getting exhausted supporting me. Is there any career support available?

We are in the Bournemouth area.

Good luck all.

[Dorset123 in reply to Dorset123]

That was carer not career! Gotta love predictive text!!

[gorffenaf in reply to Dorset123]

I am in contact with social services so there is some respite on the horizon for me. And , hey, this is my new career as my husband is not able to care for himself and I have taken early retirement...which happened to coincide with the onset of the HE episodes. Wasn't that lucky!

[Hidden in reply to Dorset123]

Hi Dorset We are in Bournemouth also and I have spent hours trying to find `help` - best thing is to go on Bmth council website and make sure wife is registered as carer (not much help but they give vouchers for cinema and `beauty treatments` for her to have a break - also they can give you an assessment to see what your care needs are and help with respite - although it is not a `quick` process - we are still waiting xxxxx good luck x

[Dorset123 in reply to Hidden]

Thanks robs wife

I am so far not doing too bad but I still haven't really come to terms with the new situation.

Have seen some of your previous posts.. Hope Rob gets his transplant soon.

[Pru1]

Hi my hubbie has hep c and cirrhosis, had an episode of HE and was treated in hospital, but has kept it at bay since using a lactulose solution, it keeps you going to the loo regularly and avoids build up of toxins. Hope it doesn´t come back it is horrible

[gorffenaf]

The doctors keep upping my husband's lactulose and he is on rifaxamin but he still keeps having episodes just over a week apart. I feel quite useless.

[Welshcake22 in reply to gorffenaf]

My partner has lactulose but to say the least that had its own side effects and he had no control of his bowels at all. With dietary changes and monitoring of certain movements - to say the least - he seems OK. I am going to ask about rifaximin again in March as hepatologist recommended this as well. His main symptoms are tiredness, but his strength his a lot better.

[gorffenaf in reply to Welshcake22]

Lactulose seems to not be working at all for my husband. Rifaxamin made a huge difference to begin with but since Christmas we are back to severe episodes some of which have caused unconsciousness which was very worrying.

[jojojostan]

We found a daily enema administered by a nurse at home and lactulose kept the enceph under control until the transplant

[gorffenaf in reply to jojojostan]

How often were the episodes of HE before daily enemas were begun? Was it a long wait before transplant? HE is so destructive of normal life because the sufferer is not even able to think for themselves...certainly in my husbands case.

[Catfishjumpin in reply to jojojostan]

I can manage without drugs using juiced fruits and vegetables and a high organic fiber diet, thats a great idea enemas for the times when my diet is not moving toxins and food thru my body fast enough to keep brain confusion a non issue. Thank you for sharing that.

[papataal]

Hello I suffered the effects og this it isn't plesant but the support of wife and kids really helped. I talk my wife about it and she says she kept me mentally occupied

gave me independence whilr still watching over me

It took her a while to get used to the fact I didn't mean whatever I said. Hopefully you have a good livrr specialist wotking with you

My best wishes for both of you

[Catfishjumpin in reply to papataal]

Lovely wife. Lots of luck.

[Ph1ldad]

Hi all, You've got me worried now. I'm due to go for a consultation for a shunt on thursday in Birmingham and have been told that HE is a significant risk. I'm a single parent and don't have a carer so I'm hoping that I'm one of the 70% who don't get this condition but am concerned. I wish you the best with your husbands condition and hope he gets a transplant soon

[carmik]

Hi

I am so sorry to hear that, I have been there, done that and it is horrendous.

Went through it in 2011 before my husbands transplant. You are on 24 hour duty and it is tiring if you do not have any help.

Is he being treated for the encaphalopathy?

How long has he been on the list and at which transplant unit?

If you need to talk I am here whenever you want to .

Best wishes

[gorffenaf in reply to carmik]

He has been on the list for just four weeks so it could be a long time yet before he gets the call. The treatment for his HE is lactulose and rifaxamin which worked well for a couple of months before Christmas.2013. But since then he has reverted to the previous pattern of hospital admission...3 to 6 days at home and then hospital admission etc.. Our transplant centre is QE Birmingham in whom I have great faith but it is still a very wearing waiting game. My greatest concern is that each episode weakens him and he is less well each time. You are right about the 24hour care. The upside of hospital admissions is that I get a nights sleep as long as I don't then worry all night...round and round.How long did you have to wait? I am not sure where HE is on the scale of urgency.

[carmik in reply to gorffenaf]

Hi again

Mike was only on the list for 9 weeks. His blood group is A which meant he could have and "O" or "A" liver. Not sure which it was when it came along.

[Hidden]

Hello xxx So sad to hear that someone else has to go through this also - thought I was the only one !!! Unfortunately there is not much advice I can offer - my husband is in exactly the same situation and has just spent 2 weeks in Kings xx Which transplant hops is he under ??? Speak to transplant co-ordinators - they are very helpful !! I am a RN and find it very difficult and tiring - I am now not able to leave husband alone at all - it's too dangerous x x try getting him prescribed with another laxative as well as lactulose (robs having 3 x 30ml a day and 3 x docusate sodium) and bowels are good - but still very sleepy - but at least I know it's not because he is constipated !!! He has just been prescribed another med for enceph LOLA - ????? Maybe worth a try xxxx

[carmik in reply to Hidden]

Hi Robswife

My husband is also under Kings College but is post transplant. Pre transplant his Encephalopathy was controlled with refaximin which was prescribed by Dr Debbi Shawcross. She was very good she was actually running trials on the drug

[Hidden in reply to carmik]

Hi Carmik - Hows it all going ??? Robs been on Rifaximin since last August - it worked well to start with but now - nothing seems to work ???? Even Kings said they had hoped to improve him somewhat but this is how it is until the `Large B Liver` turns up - Hope all is well with you xxxx

[gorffenaf]

I have not heard of LOLA or am I showing my ignorance of text speak? We have our regular 5week appointment with the liver team in a fortnight so will be able to ask for more advice.

[Hidden]

LOLA = L-ornithine L-aspartate !!! I have never heard of it either xxxx

[gorffenaf]

Thank you to all the people who have posted replies . Some good information has come out of it but mostly I don't feel quite so alone

[morris33]

my husband was like that all the time u have to make sure they r opening there bowels regular it is so worrying my husband as now had his transplant 8months

[Welshcake22]

One of my regular questions is asking my partner how many times he has been to the loo. 3 times a day is really good and makes me happy!

[wadey]

Please can I ask when you have a transplant does the HE go away?may sound a daft question

[gorffenaf in reply to wadey]

If you read what is out there on the internet the answer is generally yes but some patients can suffer an element of brain damage although this is rare. My husband is now almost 2 months post transplant and he is so so much better but his memory is poor although improving, he struggles with technology and things that need thinking about ...like someone who is really tired or stressed. I am sure this will improve as it is still early days. The biggest plus though, is that the person I had lost because of HE is now back and living a normal purposeful life.

Your question is not a daft one because HE is so awful it is difficult to believe it will go away forever.

[wadey]

Ah thanks so much for this gorffenaf,my husband is waiting for a transplant & has HE alot of the time he is lucid but I can tell when he hasnt taken his lactulose properly as his memory lapses and he gets what I call an attitude,it can be so frustrating and upsetting as he was never like that before HE,you have given me some hope,just wish he would get a call soon for transplant,we have had 2 calls so far but unfortunately the livers werent suitable. I hope your husband continues to to do well after his transplant.Laura x

[gorffenaf in reply to wadey]

As the HE progresses and he becomes less capable, don't struggle on your own like I did. Social Services can help to organise respite care and you may be entitled to some financial help as a carer. I had lots of extra things in the pipeline just as my husband went for transplant so I know the help is there.