Insufficient advice on diagnosis of permanent liver damage

[Suzie111]

My husband was admitted to hospital 6 days ago with bleeding oesophageal varices, Black poo, asisites and jaundice. His blood was not clotting as well. He has had his varices banded and been given 4 blood transfusions along with loads of Saline and vitamin K plus other meds intravenously. He saw the consultant today who said he had permanent liver damage and needed to give up alcohol. He has not been put on a special diet apart from puréed food for the next few days. He will be followed up regularly. No other advice at all. I am going to speak to a doctor later any advice on what I should ask would be gratefully received.

[AyrshireK]

Hi Daisysue, have a read at the British Liver Trust page on cirrhosis and the one on living with liver disease and they should give you some good initial background knowledge - that was my first port of call after my hubby was diagnosed completely out of the blue back in April 2012 following a massive upper GI bleed.

britishlivertrust.org.uk/li...

britishlivertrust.org.uk/li...

My hubbies condition is due to an auto-immune illness rather than alcohol but the advice from your husbands doctor re. alcohol is imperative - he must give up alcohol or his condition will only worsen and continued drinking will prohibit any chance of transplant should that become required.

If your husband is showing signs of malnutrition and muscle wastage - which is common at the stage of ill health your husbands other symptoms suggest then he'll need to eat regularly to keep his body fuelled - carbohydrates and proteins in small meals/snacks throughout the day and avoiding any long periods without food (a supper containing carbs and protein is recommended). Also, he needs to watch his salt intake as this will exacerbate the build up of fluid (ascites). No added salt, no ready meals etc.

One of the first questions I would ask is for a referral to a dietician, we asked when my hubby was first taken ill but saw no one locally but on first attending transplant hospital/liver unit it was the first additional specialist we saw and immediately put hubby on a special eating plan as he was deemed malnourished.

Read up on the condition and make notes of anything you are unsure of. Attend your hubbies appointments along side him if you can so you have two pairs of ears listening to the med speak, jot down notes and before you go make sure you have a list of questions.

Anything else we can help with just come back and ask.

All the best to you both, Katie

[Suzie111 in reply to AyrshireK]

Thank you Katie feeling quite scared of whether life will return to normal again.

[Isabelle2 in reply to Suzie111]

Katie’s advice is excellent. If it is due to alcohol then he really must take it seriously. He may have problems stopping as it is an addiction. You can help him with that. The first thing would be to ditch/give away any booze in the house. Ask the dr if there are any services he can use to aid his alcohol recovery. I found it very difficult to give up drink but I managed and am so much happier. If you wish to pm me about this pls do.

Isabelle xx

[Hidden]

Hello Daisysue,

Do you happen to know when your husband last had an alcoholic drink? The question I'd be asking is to what degree is the liver damaged. Can they be more specific? Ask if they are talking about end stage liver disease, and liver cirrhosis. I suspect this is what they mean, but it would be good to have some clarification. I'd also want to know what their long turn prognosis is.

The rules are, that a person needs to be free of alcohol for at least six months before they can be considered for a liver transplant. This is another reason you'd need to know what the long term prognosis is. The liver has wonderful powers of regeneration, but only if the damage isn't too severe.

The other thing to consider, is about giving up alcohol. To be able to do this successfully, it needs to be a conscience decision to want to give up completely. Lying in a hospital bed, just means that he's had to stop drinking not because he wants to, but because he doesn't have a choice. So, he's not made that decision for himself as yet. This is going to be one of the other things they'll be looking at if he was to go onto the transplant list.

Katie, has always offered very good advice on here, and if you'd like some more advice about alcohol-related liver disease, I've put together my own website which talks about many of the medical conditions associated with this condition. You may find some of this useful: taep.co.uk

Good luck at your doctors. It maybe a good idea if someone went alone with you, just for a little support.

I wish you both good luck and best wishes.

Richard

[Adelou]

Hi Daisysue,

I went through the same with my hubby back in Dec 2015...it just happened out of the blue, no warning signs. Huge shock. I did as Katie suggested above, read up on it, sometimes when the doctors are telling you what is happening you cant take in all the information.... because you are watching what is happening with your other half and you feel helpless.

If there is anything you don't understand make sure you ask the medical team as they can often forget that we don't understand their medical jargon. Also part of the problem was that they would tell my hubby info, which he them couldn't remember when I asked him due to HE.

Fortunately hubby is now on the road to recovery after being gifted with a liver transplant...we are currently 2 months in post transplant.

Hope things improve and get easier for you to deal with..it is a shock to the system

Adele

[Hidden]

Hi Daisysue,

Good to hear that your husband's condition has improved.

You have received a lot of good advice from the others here.

I just wanted to let you know that my husband was hospitalized with liver and kidney failure in 2015, his most likely caused by alcohol. While in the hospital he was told he had to quit drinking and he quit then and there, luckily for us. He is allwed non-alcoholic beer by his liver doctor, so he has those in stead of regular beer. His liver doctor told us that once the liver is badly damaged, whatever the reason, any alcohol continues the damage - he told us that NyQuill is also not allowed due to the amount of alcohol in it - surprised us, but we avoid that also or look for the hard to find Alcohol Free NyQuil.

We just had hubby's most recent 6 month liver doctor visit and the doctor was very pleased that hubby is still impoving. We are also happy about it as he has regained some muscle, a bit more each doctor visit and is doing many of the things he had stopped doing.

Hubby has not had a transplant and his doctor says that it is not in our near future, mostly the visits are to look for liver cancer which is a concern once the liver is damaged.

Anyway, hopefully, your husband will continue to improve and you and he will manage this together well.

I take a notebook with us to all appointments and put questions I/we want to ask in it too.

Best wishes to you both,

Mary

[Hidden]

Hello again Mary, I'm glad to hear that your husband's health continues to improve.

Not wishing to pour scorn on this good news, but it is possible for a cirrhotic liver to start to develop tumours. These little blighters don't have to be cancerous and can just be benign, but they need to be treated and removed. It is a most worrying time if someone contracts them.

I had five of them before I had my transplant. They have to be burnt of using the Ablation technique. There are three types of ablation. Microwave, Radio-frequency, and Laser ablation.

One of the important problems of using these techniques is that the tumours have to be at just the right size. If they are too small, they have to be allowed to grow, and if they are too big, they become using this technique as there is a risk of the cancer cells breaking off and entering into the blood system.

I have spoken about this procedure on my website under medical consequences: taep.co.uk/medical%20conseq...

I hope this helps, and that your husbands recovery continues.

Good luck to you both.