First time poster looking for a little... - British Liver Trust

British Liver Trust

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First time poster looking for a little support and advice for my hubby

Spamberella profile image
Spamberella

looking for advice and support for my husband who was diagnosed with alcoholic cirrhosis in 2017. He was diagnosed after esopageal varices burst whilst he was at work and ended up in hospital for 2 weeks having multiple procedures and blood transfusions. Before this happened he was a reasonably fit and healthy 45 year old and held down 2 very physical jobs. He was quite a heavy drinker but only really of a weekend and wine with our evening meals. He stopped drinking as soon as this happened and has not touched a drop since. His condition was being managed but over the last 6 months his health has dramatically deteriorated. Muscle wasting, ascites, hair loss, loss of appetite, extreme tiredness, trouble with urinating, 3 drains in the last month and we think that he probably has rectal varices as he quite often passes blood when going to the toilet. The doctors just don’t seem to be worried and recent scans have shown no changes and blood tests seem to be ok. But I can see a huge difference in his health and I feel helpless just watching him so poorly and uncomfortable, so I thought that I would turn to you guys and see if anyone might be able to shed a light or have any little bit of advice that would help. I’d be extremely grateful xx

13 Replies

Hi Spamberella, your husband is showing every sign of decompensated cirrhosis and when you say doctors don't seem worried I must ask is he actually seeing a liver specialist? With the symptoms he is presenting he should be referred to a liver transplant unit a.s.a.p. for a chat and potential assessment for liver transplant.

Transplant units prefer to see patients too early rather than too late and if hubby has been drained 3 times in the past month and also havign issues with urination it could point to kidney issues too.

Please push for referral to your nearest transplant unit.

The BLT website has excellent guides on cirrhosis and the patient charter page might be really useful to you.

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/li...

Best wishes, Katie

Hi Katie, my name is Katie too.

Thankyou ever so much for your reply.

Hubby is under a liver specialist and is due to see her on the 12th of this month.

He hasn’t touched a drop of alcohol since he was first diagnosed with cirrhosis and portal hypertension.

He has managed his condition quite well for the last few years but at Christmas he caught COVID. Thankfully he only had minor symptoms and he seemed to recover and was back to work after 14 days. So we didn’t think that it had effected him.

He does tend to bury his head in the sand tho and he tries to hide when he’s feeling ill. I think it’s a bit of a male pride thing!!

But I can see how much he has deteriorated and I have put my foot down with him.

We have written a list of all the problems that he is having to hand to his specialist. Usually I would go with him to see the specialist but because of COVID he has to go alone😟

Thankyou ever so much again for your feedback,

Katie x

I think it's important that you get a face to face consultation, so they can see the physical changes, if you haven't already had one. Also, it needs to be with someone who has seen him before. People who don't know him won't recognise the change in physical appearance but will rely on numbers.

This is how I got admitted for treatment, although my bloods were also becoming more deranged. Best of luck.

Hi there,

Thankfully he has an appointment with his specialist next week and I’m sure she will see a dramatic difference in him.

He’s lost a lot of muscle from his entire body in a very short space of time.

His skin is loose on his arms and legs, cheeks and eyes look sunken and he’s had to take his wedding ring off as it just falls off his fingers.

He’s really struggling with ascites and has had 9 litres drained 3 times in the last month.

It seems like as he’s loosing weight he’s gaining more fluid so his weight doesn’t change until the fluid is drained off, if that makes sense.

He’s 5’10 tall and used to be a strapping 16 stone of muscle but now he’s 12.5 stone and just all bones and bloated tummy, bless him.

He’s been back and forth to the hospital but not had anyone consistent in his care so I’m hoping that his specialist will recognise the change in him.

Many thanks

Katie x

Totally get the weight not changing thing. Glad he's being seen next week & by someone who knows him. Lack of consistency is no use as they focus too much on numbers & not enough on the individual, basically because they don't know your hubby.

It is tough being on your own, but I would phone before the appt to see if you can go in with him. Many of the Consultants will be sympathetic & allow partners in, despite Covid.

I think there's every chance that once the specialist sees him, they will admit him, as there are cold wards to allow for people who need treatment & thorough assessment, but a lot will depend on how busy they are already.

I wish you both the very best.

Ask to go with him, my hubby in same position (Nash ) I go to every appointment with him, as he wouldn’t take in all doctor has said. Good luck x

AyrshireK profile image
AyrshireK in reply to Whitethorn

Likewise, my hubby couldn't go to a consultation alone - he doesn't take in information and can't make himself understood. We haven't had a consultation in over a year though with all the covid stuff.

Whitethorn profile image
Whitethorn in reply to AyrshireK

We have been very lucky with appointments all face to face as hubby has been so poorly, done weekly some every couple of weeks, but always on the end of a email for advise etc they have all been brilliant which I am very grateful for x

Usx2 profile image
Usx2 in reply to AyrshireK

Hi, I was diagnosed with cirrhosis last year, and because of all the covid I have never seen a specialist in person. I have been passed from pillow to post, one person saying one thing and then the following week another person saying another. They have been totally contradicting each other. I am very much like your husband, I struggle to take everything in and I don't always seem to be able to get out what it is I want to say. So I definitely agree with you that someone else needs to be there when a patient is going for an appointment, and always try to get a face to face appointment. I am really struggling as I am not getting the answers to my questions and I'm now considering a private gastroenterology appointment if only to get that initial face to face meeting. Unfortunately these appointments are not cheap. I totally understand that there is a pandemic going on and yes the drinking was my fault (not touched a drink in almost 7 months) I should still get the help that I need as I am doing everything I'm being told to do.

CarpeDiem11 profile image
CarpeDiem11 in reply to Usx2

Despite so many things going wrong for me last year, it took 9 months before I got a face to face with my Consultant. In the meantime, like yourself, I got conflicting advice & it was a very worrying & exhausting time trying to get any response from my usual Consultant. I have an autoimmune disease, so how your liver is damaged is really not the issue. Covid patients have been put first, that's all, to the exclusion of others, until you become an emergency. If you do finally get a f2f, then record it. Good luck

So sorry to hear that your hubby is struggling at the moment. As others have said, it is so important to make sure that your specialists is made to understand the overall deterioration. It sounds like he has decompensated cirrhosis. That would explain the muscle loss, since a cirrhotic decompensated liver can't hold onto protein and other nutrients as well as it should. It is important to eat something, if he can, late at night, so his liver will stay supported during the night. A peanut butter sandwich, maybe, if he can stomach it. Eat protein and carbohydrates with every meal as well as plenty of fruits and vegetables. Here is a link from a Japanese lab on the value of eating late snack to support your liver. Best of luck to you:

otsuka.co.jp/en/health-and-...

Thankyou everyone for your help.

We’ve been very pro active this morning and written a long list of all his symptoms I’ve called the hospital and I’m ok to come along to see his specialist with him, thank goodness.

He’s having a drain this morning and they are also going to examine him for possible rectal varices.

Hubby tends to try and ignore his symptoms and struggles to talk about his illness as I think that he is scared of what might happen but I’m hoping that he has finally realised that he cannot just bury his head in the sand and we have to face this head on.

Thankyou all once again,

I shall keep you all posted

Best wishes to you all xx

That’s brilliant hope all goes well x

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