cirrhosis and edema / ascites

[Rshc]

My partner diagnosed 22.12.21 with alcoholic cirrhosis stopped drinking on that date. Since then has been having 3 weekly drains and wasn't able to have diuretics due to low sodium. Was hospitalised last Friday due to extreme edema in feet, legs and scrotum. Has been on IV diuretics as sodium now OK but so far no improvement. I am worried it could be refractory ascites and also worried that initially they were talking about his liver recompensing but this feels like a turn for the worse. They are now also talking about TIPSS

Has anyone been through this and decompensated. I am so worried for him

[bcsurfer]

Hi

I honestly think that you need to nail down your specialist and sit with him/her with a list of written, prepared questions. Even flow chart your questions with "what if" scenarios and outcomes.

They are hard to get time with so when you do, maximise the value of it by being prepared and do not be afraid to ask the scarey questions. Facts are all that matters right now. Consultants are not intentionally evasive, they are just busy and because your partners condition is caused by alcohol it does not make them a second class citizen. Remove any thought of that from your mind.

I would be very concerned about the regularity of the Acites drain. That does not suggest a liver that has the capacity for the recovery you are hoping for. The Edema likewise is manifesting in a way that I would view to be an indicator of more complex concerns. These are all strong reasons why that dialogue with the consultant is critical.

In the meantime absolutely do not give up. Do the opposite. Pour your strength into your own research, focus hard on their diet. Explore super foods, low sodium and read every label that is on anything he is going to consume. Do not waiver from this. No treats, no weakness. You are the Gatekeeper and your job practically and emotionally is paramount right now.

With his willingness to do the right thing you are not a helpless by stander. You can make a massive difference. Be strong. You have what it takes to help achieve the best outcome possible.

[Dogbot]

Hi I do agree with bcsufer do have that list it’s so important that you get good information, google is NOT good information. When I had it in my legs, feet and scrotum it took weeks more than days, so if the doctors have an eye on it don’t worry to much but photos are a good way to watch for it going down. Good luck to both of you .Stay Safe All

Dogbot 🐶🌈Dave

[Aotea2012]

I agree with bcsurfer. You must nail down the clinicians on this. Ascites takes a bit of time to develop and it also takes a bit of time to go away. Diuretics may be working but not be evidenced yet. Which is why the doctors will be waiting to see what happens when IV diuretics are introduced. IV means it gets into the system more quickly than tablets. He’s been alcohol free now for long enough for ascites to have waned without the help of diuretics so you really need to get a full understanding of what’s going on. Diet with ascites is very important. A diet with circa 2000mg is normally recommended. It’s crucial that he limits salt. A TIPS procedure is normally done when the blood flow through the liver is very compromised due to scarring and aims to lower portal hypertension which will be causing the ascites. It will be the next step if the diuretics are not kicking in. Which is why it was suggested. The fact it hasn’t been done yet suggests they still think the diuretics will work. It’s important that they explain what they are thinking to you as it will prepare you for what happens next...which may be nothing more. Sadly, it’s a wait and see situation at the moment which is very difficult for you I’m sure. Try to keep positive, make sure you look after yourself and try to do something today which you enjoy as a treat. Take care.

[AyrshireK]

I think you need to ask about referral for transplant assessment.

The criterion for transplant assessment in those with alcohol related liver disease has very recently changed and had done away with the minimum 6 month of abstinence situation of old - the fact he still has decompensated symptoms after over 3 months abstinence should mean he qualifies for assessment at least.

If not already being seen at one of the main transplant centres then push for referral - TIPSS can tide him over till transplant BUT it isn't without it's own risks as there is a slightly increased risk of having a stroke plus with blood being channelled through the liver it is no longer treated by the liver so it is very common to have a development or worsening of Hepatic Encephalopathy symptoms.

These revised transplant guidelines can be found at:- basl.org.uk/uploads/LAG%20A...

All the best to you both,

Katie

[Readlots]

Lots of good advice from others on here. I’d just add to what Aotea has said. While he’s in hospital make time for yourself. Meet with friends, get outside and do nice things for you. It’s exhausting and isolating caring for others. Take time to look after you while he’s being looked after in hospital. You’re important yoo

[Readlots]

*too 🙃

[Rshc]

thanks everyone, they have started a whole host of tests on him - with a view to establishing if he is fit enough to be considered for transplant. So far so good on the tests - there was some concern on his heart but its come back fine.

[Toffegirl]

Hi ya. Sorry to hear this. My had ESLD, all I will say is get a dietitian in place ASAP and also push for a transplant. Do not take a BS from the consultants. My dad and I fought for 18 months with the consultants etc. we never had a dietitian in place and by the time we got a referral to Leeds it was too late. When we got to leeds we learnt more in that hour then we had in the past year. People with liver disease need to eat 3 times more then normal, need a bedtime snack. They need to consume more calories as the liver eats away at the muscles. My mum was so malnutrition , thro no fault of hers or ours as we presumed she was eating well. At no point during her time was she seen by a dietitian and I believe that if she had seen one she would be here now as we would have been educated and made sure she was strong. Also with the referral, should have been organised in June, October I was asked if I wanted them to refer her. Please please, push for everything and don’t let them fob you off. Take care xx

[Rshc]

Thank you for sharing your dad story in order to help us