Couple of questions cirrhosis staging ... - British Liver Trust

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Couple of questions cirrhosis staging and a driving question

Livewell69
Livewell69

Hi there

I have a couple of questions but I hope you don't mind me asking. Firstly looking at the posts on here most people seem to be giving stages 1 to 4 on there cirrhosis diagnosis. My husband who has decompensated liver at the moment the only information I have been given with regards to staging by the consultant was he said A to C with my husband being a C. C being the worst. We were hoping that our last appointment that the consultant would possibly discuss transplant however she was very exact and said to my partner that after his esophageal varices last year he did not listen to the don't drink again talk she gave him. He continued to drink for a further year and ended up in intensive care this time with sepsis and other related problems including ascites and HE. She said that this would make it more difficult for him to be on the transplant list as he had not heeded previous warnings. So at this moment in time as he has only been out of hospital for 3 weeks we have to just see what the next few months bring and pray that his liver may compensate again otherwise I'm not sure what lies in store for us. Can anyone give me an idea ofvthe future as tget seem reluctant to give an prognosis. She also said that in no uncertain terms he was not to drive again this completely floored him and he was a total shock. Can I ask has anyone been allowed to drive after suffering from HE they are not showing any symptoms ? Thank you in advance. Can I also say join in this forum has kept me sane over the last few weeks

17 Replies
oldestnewest

The C staging your husband has been rated is Child Pugh C. For more information on this you can read up at :- en.wikipedia.org/wiki/Child... .

As regards transplant where alcohol is the cause the in the UK there is a minimum requirement of 6 months proven sobriety plus a commitment to life long sobriety before transplant assessment is even considered.

If the doctor has told him he must not drive due to HE then your husband must notify DVLA of his condition and not drive. Insurance will be invalidated.

Katie

Hi Livewell,

Your hubby has HE. Just because he shows no signs now it doesn’t mean that it can suddenly come on while he is driving. HE can come and go but the potential is always there. That is why he cannot drive.

Doesn’t mean that it CAN suddenly or

Doesn’t mean that it CANT suddenly.

I’m not sure which is grammatically correct 🤷‍♀️

Cheers,

Brett

Livewell69
Livewell69
in reply to Brett11

Hi Brett

They both make sense. Thank you. I understand that completely; I guess HE will always be a part of his life whether he ever has another episode or not. It is becoming very real how life changing this has become.

Hidden
Hidden

If a person has been diagnosed with Hepatic Encephalopathy, then they have to notify the DVLA. His license will have to be surrendered. This condition is serious, as people have been know to drive on the wrong side of the road on motorways. If he continues to drive even now, then he'll be driving without any insurance, as his policy is nolonger valid.

It should be remembered that the mental damage caused by HE can be permanent. Sadly he's had his wake up call, and should have listened to what his body was telling him.

The doctors and physicians can try to repair his body, but this is an addiction and his mind needs to be treated at the same time. Trying to just repair the body, just wont work. I was at a meeting last week talking about this very thing. The meeting was with the "Liver Transplant Support Group" at the QE Birmingham. I was talking with Alan Hyde who has been a volenteer on the transplant ward for over 20 years. (Many people on this site will know of Alan). He was telling me that the worst question he ever gets asked when he's visiting people on the ward straight after their transplant is, "how long do l have to wait before l can have a drink again". This, Alan says really upsets him as it shows a total lack of respect for that gift that persons just received, and a kick in the teeth for everyone involved.

What happens in the future is very much in your partners hands. It's about choices, and he's got some pretty big ones to make. There are plenty of people here on this site who have been exactly where he is now. It's not going to be easy, and we all need that very special person to be there for us, and to be in it for the long haul. I am coming up to 5-years alcohol free later this year, and there are plenty out there just like me. If we can do it, so can he.

Please make tomorrow the first day of the rest of his alcohol free life.

Good luck to you both, you can do this.

Livewell69
Livewell69
in reply to Hidden

Thank you Richard very thought provoking. He has not had a drink for 5 months now and he now feels sick at the thought of it. But it has took him to be near death to truly feel thr consequences. Its difficult to watch this unfold and see a shadow standing in the former shoes of a proud big man, losing the ability to drive and possibly even work at 48. Its soul destroying and not the life I wished we were embarking on. For the moment I take life day by day and try to not imagine what the future holds. Hope fully things will work out.

Hidden
Hidden

It will get easier, l promise. Try to remain positive.

5 months is a good start. It's not easy, but sadly l think your seeing a life through alcohol eyes. As the months go past you'll both become use to a life without it, and soon you'll be wondering what you ever saw in the stuff in the first place. All the triggers are out there trying to tempt you/him. But, he's made it through Christmas, that is a real achievement. Well done.

I am 65, and able to look back on my life. I see that my life is but a series of chapters, and as one comes to a close a new chapter starts. That alcohol chapter is now behind you, and l can definafly assure you that a life without alcohol is still a pretty good life. I have no urge to touch alcohol ever again. Firstly it's because l don't want to, and the other is out of total respect for my donor. My wife drinks the odd glass of wine, and l'm not at all phased with pouring her that glass, as it was me who had the problem, not her.

No matter what this new chapter brings to you both, embrace it and dont look back. Please stay in touch, you have lots of friends on here who will help you on your journey. Good Luck.

Brett11
Brett11
in reply to Hidden

Hi Richard,

That’s like Grant and I. I don’t mind him having a bottle of wine and a beer or two on his Friday and Saturday night. He drinks in front of me but I will not allow him to drink any more. I get bored of the one sentence that goes on three tangents and takes half an hour to say. And then repeat the same bloody thing half an hour later.

Like you said, I had the problem not him.

Ta,

BT

LAJ123
LAJ123
in reply to Brett11

Brett,

Know what you mean - going to a pub or a party sober is really interesting and then just boring. A brilliant reminder of how an alcohol free life has a bonus, we never or hardly ever, have to regret what we did or said the previous night while drunk.

Jim

Thank you so much. I have never been a drinker. The odd one when I was young but never touched the stuff since I had my children which believe me people can't understand. I have had more grief not being a drinker lol. People think I am odd because I don't drink.....ironic isn't it?

I have cirrhosis caused by autoimmune hepatitis. I've never been a drinker or a smoker so it does sometimes feel unfair. My husband will have a couple of beers about 3 times a week but he has been really drunk twice in the last 6 months when we've been at a wedding and a party. It really made me furious, I have no time or patience for drunks.

Hidden
Hidden
in reply to Livewell69

I dont drink either and I'm happy, fit and healthy because of it. 😀🤸‍♀️🏋️‍♀️🏃‍♀️Who needs poison in their diet?

I think all of the replies have some great advice in them especially about going through Christmas, there is a lot of excuses (reasons) to have a drink, bad day, good day, sad day, good news, bad news and it goes on. I have some things in common I was 49 when my liver went, I will always remember the doctor standing at the end of my bed in the morning when I had spent all night on drips and under nurses watchful eyes saying, well I thought I was going to get a call last night saying you didn’t make it. A lot of love help and hard work and 15 years later still here. It’s not easy but he must have something to believe in, mine was grand children. I wish you and your husband all the luck in the world and tell him the world opens up and there is a new life out there 😃

Hi,

As usual there have been informative and supportive answers from the members. But I want to add to something Kate said.

Your husband has been without alcohol for five months and from what you have said, that will probably be permanent.

I was absolutely confident I wouldn't drink ever again as I was so ill and hadn't had one for almost a year. But that wasn't good enough to convince them that after a transplant and no longer too sick to drink, I would not begin to drink again. Should the time come, and the possibility of a transplant arises, the team will require more than his word for not drinking and importantly, a commitment to never drink again. As Kate has already correctly said, this means PROVEN abstinence. If you haven't already done this, my advice is to see your GP and ask to be referred to a recognised alcohol treatment / course as soon as possible. This way, if there is a need to prove sobriety the six month clock has been already started.

Take care and make sure that you also get the support you need as his carer.

Jim

Brett11
Brett11
in reply to LAJ123

Hi Jim,

I dislike the fact of having to prove you’ve been off booze for 6 months. Like having to go to a detox program to get your little book stamped every time. I’ve said that to my doctors. I’m never going to go to any detox program. I’ve been alcohol free for over two years and the only proof I have is my say so and my blood test results.

Cheers,

Brett

davianne
davianne
in reply to Brett11

Hi Brett,

I stopped drinking just over 2 years ago without any support. I recently asked for a copy of my last bloods report, only to find that although very good, they sent copies to my local Liver centre (Kings, in London) I think this may be the proof of abstinence that they require for future transplant. I think the blood results can't lie.

David

LAJ123
LAJ123
in reply to Brett11

Brett,

I totally agree with you.

The feeling that the team don't trust you is hard to swallow but when it came to it, I had to accept and go with what was required by the transplant team and specifically the Specialist Nurse in Substance Abuse.

The proof of the clean blood tests doesn't really address the underlying reasons for drinking. As pointed out by livewell69, her husband is currently too ill to drink, I was the same. The major worry for the team is, when the illness is removed and the person is feeling 'normal', will there now be nothing to stop the return to drinking. Only by attending an accredited course will you be able to convince the team of your suitability and determination to have an alcohol life post transplant.

I was fortunate that the course I went on didn't include a 'higher power', for those who don't get the reference, that's Alcoholics Anonymous. I know it works for some but not my style. I had one-to-one counselling combined with group work. Interestingly it was a mixed 'substance abuse' group, I didn't mind this as I believe we had more in common than expected.

They even managed to throw in a course 'introduction to counselling' which is an entry level qualification. When the course was complete and I was listed / transplanted I even went back to the group despite not having to attend any more. This was to continue to give support to the others in the group who I hoped wouldn't have to go down the cirrhosis / transplant route.

Jim

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