First post, please help!

[Melpops35]

Hello everyone

My dad was diagnosed with ALD 6 years ago, he was very poorly with tense ascites, weight loss, jaundice and confusion. He completely stopped drinking and after the 4 months of draining and lots of medication the last 5 years have been really good. 

However out of the blue 1 month ago the ascites has returned. He is being drained every 10-14 days about 10 litres. He has lost about 2-3 stone in muscle and looks very ill. Sleeping a lot and slurring, he's also forgetting many things. 

He lives alone with no family or friends (an unfortunate outcome of many years as an alchoholic) I am the only person in contact with him but I live 100 miles away. 

I have spoken to the consultant who has told me one month ago his liver function etc looked fine but he has not seen anyone since. The doctor says he's not Ill enough to admit and the draining takes place in outpatients and he doesn't see a consultant.

He has an appointment next week but he doesn't want me there.

Does anyone have any idea what could have caused the return of the ascites? And what about prognosis? 

I am so so worried and upset as no one seems to be communicating. 

Sorry for the long post, but if anyone thinks this could be it I need to go there. (I have 3 small children and I am a teacher)

Thanks in advance! 

[Catfishjumpin]

Yes go. But I think he could bounce back. Its entirely possible. He may be keeping some things to himself. He is an alcoholic and you are the only family member that cares about him.  Keep after the doctors, he is in trouble, it could be from sodium or from too many fluids or too much protein. Since he is alone, its hard to say. Do you think he is drinking again. My experience is we go down every few years quite drastically then somehow we make it thru and begin trying again to be healthy. I am 64, I was an alcoholic with Hep C. I have been living well over two years with liver cancer plus hep c since I was 20 years old. Good luck. I know this is so hard for you. 

[Melpops35 in reply to Catfishjumpin]

Thank you so much for your reply. I don't think he is drinking again he's been very dedicated. I'm praying he bounces back again. He is being really positive and says he'll be back to normal soon! 

I just wish I knew what his test results were or something.

I appreciate your response,

All the best 

[Catfishjumpin in reply to Melpops35]

Is it possible to call the person that you have an upcoming consult with? Once I quit drinking,  lost all interest in it, that was  in 2004. He probably isn't. Can you ask him what he is eating and how much fluid he is drinking. I sure hope he can become stable again.

[pip-lit]

I'm sorry you and your father are in this situation and i It must be very hard living so far away, with young children and a demanding job. I know what you mean when you say nobody communicates - my partner has cirrhosis and is just being left to grow worse with no support or positive ideas for intervention. I can't help I'm afraid with your question but I'm sure someone with more experience will reply to you. Having lost family members all I would say is trust your own feelings - if you feel this is the time, then your instincts and your long bond with him are telling you something important. I wish you strength through this awful time and will keep you and your father in my thoughts. xxx

[White-feather]

Hi,

Firstly, well done for posting on here, there are so many caring people who will help with their experiences ☺

I would really try to go with your Dad, despite his reluctance. He may be greatly appreciative in the end. It will be so hard for him regarding losing family and friends, that's happened to me. 

It is people like you who stay non judgemental, open minded and kind. Your distinct, kind and caring attitude really stands out 🌼 Please look after yourself too, give your children huge hugs and smiles. Take the strength from them. They are there for you 💙

Also, when you walk into your classroom take in all of those fresh smiles as every one of those smiles is for you, their teacher!

Take care and please try to keep us updated, when you can.

🍀

[dezzza33]

Hi my liver problems through long term ulcerative colitus need new lver waiting 4 years use to be drain every ten days too its not nice ,apart from the first few days relief from weight of fluid, i to lost 2.5 stone took 2 years to put back on ,had a tips shunt fitted took best part of year to kick in not been drained for 9months ,had slight hiccup went jandice 2 weeks in hospital luckily seem to sort it self out fingers crossed keep dad away from alchole low salt diet plenty of meat fish regards Derek

[Bermuda1]

If it doesn't look like stopping soon , they could try the alpha pump, I know its being used in 3 hospitals in the UK so far. 

[Bermuda1]

Here is the link. alfapump.com/ascites/how-to...

[RodeoJoe in reply to Bermuda1]

Interesting! So basically pumps ascities into the bladder.

[Bermuda1 in reply to RodeoJoe]

Yes they have been in Europe for a few years and three UK hosps are using them where applicable, think Kings and St James and can't remember the other one. In the US still going through trial process as it FDA approved as yet .

[Melpops35]

Thanks everyone for your replies. I'm hoping the outlook is a positive one and this s just a blip. Going with him to the consultant appointment.

Dad is really positive to be fair, I just wish his personality hadn't changed so much. He used to be so sharp and quick. People just assume now he has really special needs. I assume this is part of the disease??

Makes me feel so sad.

Wil keep you posted!

[RodeoJoe in reply to Melpops35]

Very much part of the disease. It's to do with toxins in the blood.

[Hidden]

I know how you feel about the special needs.

My father is ill with decompensated liver.i get him out the house every couple of days,push him about in his wheelchair.but when he trys talking to people its like hes had a stroke as his speech is bad at times.they look at him like hes special needs or something!

So frustrating!

I havent even given my father the choice to go alone anymore as i didnt trust what he was telling me! So i accompany him at all appointments.bit easier for me as i am his fulltime carer now.i had to give up my life 200 miles away, a year ago or my brother wouldve slung him in a home....or he wouldve died.i was lucky enough to do this, as i dont have small children.

I hope you get to the appointment and find out the info you need.im sure in the end he will appreciate it.

Good luck and take care