Helpless.

[Hubbie2]

Hi my husband has chronic liver disease. He has been in hospital and the last time they removed 21 litres of fluid from his stomach he also had very bad bleed they managed to band and glue his stomach he has been home a week now but is so weak he can hardly get out off bed. He is wasting away in front of my eyes . If he had cancer you would get help I.m finding if you have liver disease your on your own.

[Hidden]

Welcome to this site Hubbie2,

I hope some of us can be of some help to you. After having read your comments, I gave them quite a bit thought before I decided respond. I gather by your tone, that your not happy with the treatment your husband has presently received.

There's a lot of information that you've not provided here so not many people will be able to comment or offer advice. Here are a few questions that may help some of us:

1. May I ask what is the cause of your husband's liver disease?

2. How long has he been poorly?

3. Has he received treatment at a local hospital, or at one of the specialist liver hospitals?

4. How old is your husband?

5. Did the hospital tell you what the next course of treatment would be, or the long term prognosis?

While some of these questions may seem trivial, it will help some people that have been through all this themselves to best advice you. While the variceal bleed can happen at any time, the ascites builds up over a period of time. Both these conditions can be life threatening, so I think it's pretty safe to say that your husbands life has been saved on two occasions. Having 21 litres of fluid removed, is I think you'll agree, an awful lot of weight, not only that but this would have been pushing everything from his stomach up into his chest, thus adding pressure to his lungs and heart.

I would imagine that the hospital has most likely sent him home, because like everyone knows, beds are scares and much sort after. It could well be that there is nothing more they can do at this time, until the effects of the procedure have settled down.

I can hear your frustration, but you have friends here now, and if there's anything any of us can do, then please let us know.

Regards

Richard

[Faithfull in reply to Hidden]

That reply was good for me to read the way you put it thanks and sorry about that ladies husband and how are you?

[Hubbie2 in reply to Faithfull]

Thank you for replying.

[Hubbie2 in reply to Hidden]

Hi my husband is 57 and his illness has been caused by many Years of drinking heavily . He decided to stop and with the help of the doctor weaned himself slowly of alcohol but sadly it was 2 late and now he has decompisated liver disease . He has been in and out off hospital for the last four months. This is the worst yet . They have told him the outcome looks very poor and that at the moment they wouldn't consider a transplant as he is so ill. I just feel alone at the moment and wonder if his quality of life will get any better.x

[Hidden in reply to Hubbie2]

Thank you so much for answering those difficult questions for me. I think I speak for a lot of others on here, that we now understand what your having to deal with. We sometimes forget that liver disease in all it's forms, doesn't just effect one person, but also has an affect on all those closest to them. This has to be a terrible time for the both of you, and it must be so reassuring in a way that your husband is aware and grateful that you have been there for him every step of the way.

I'm so sorry that your having to deal with this and that you feel you are so alone. Does your husband have any family or are there any other supportive members of the family? I think you need to off load all these frustrations and emotions with someone.

As for the quality of life question, all I would suggest is that your husband remains in an up right position as much as possible. As I mentioned before, If a person with Ascites lays down for too long, this can cause pressure and move some items such as the gut and stomach up into the chest which in turn will cause shortness of breath, and a feeling of being full and bloated. This will also add pressure on the heart, and cause other complications.

I think you should have a talk with your GP about both your physical and mental health as this strain on you must be enormous. Your doctor should be able to make arrangements, such as home care assistance, or some form of counselling or therapy.

I just know that others that use this site will offer you some support too.

Please take care, and try not to feel so alone.

Richardxx

[Hubbie2 in reply to Hidden]

Thank you. I have a great support from my mum and friends so when I have a wobbly moment I can turn to them. I have finally got things in place to make my husband more comfortable .nobody has mentioned anything about sitting up he has been lying in bed or on the couch all the time. I will encourage him to try and sit up. Thanks again.

.

[Faithfull in reply to Hubbie2]

Just to let you no I'm thinking of you both you may not feel it , but your very strong and my heart goes out to both .

[peacelily59]

yes i think if you have liver disease through alcohol abuse there is a bit of the attitude oh well it"s self inflicted you are treated as a lesser,this is my own personal experience anyway

[jojokarak]

Hiya I know it's so hard to see the decline first off I can give you some hope I know a few people who had cirrhosis due to alcohol and were in and out of hospital with no hope of transplant due to how poorly they were (I was treated the same way even though I had mine through a long standing condition but on my paperwork said alcohol) it got to the point they weren't functioning at home and ended up in hospital long term and then receiving a transplant I was in for 4 months before I got mine.... I not sure which hospital your husband is under but you need to speak to one of the social workers they can help with all sorts I had equipment installed at home my husband was offered support to have breaks away to discuss what he wanted if you get no joy with the hospital please speak to your GP and even citizens advice can help and your correct if it was cancer you would be offered help on a plate but anything else we have to go anytime search for it but it is out there so please don't give up hope or feel alone 😊

[Hidden]

Hi Hubbie2,

Welcome to the forum and thank you for posting in what must be a very difficult time.

Are you getting any support from the GP and nursing or care services? Have your husband's care needs been assessed? His Gp should be able to advise on this.

There is a lot of information on our website that may help, and we hope that you find this forum a supportive and understanding place to visit,

Warm wishes,

BLT Admin

[Hubbie2 in reply to Hidden]

Thank you so much.x