Ascities drain

[dexiondave]

I have an ascities drain, 18months ago when it was fitted I drained up to 9 litres a week, I now drain less than 1litre a week.

Is this good or bad, I’ve no one to ask.

[AyrshireK]

I've no idea on the ascites drain situation but when you say you have no one to ask. Who is managing your care? Are you not able to telephone your consultant or consultants secretary or even your GP who might be able to source information for you.

Katie

[dexiondave in reply to AyrshireK]

I get a phone call once a month from my consultants nurse. That’s all.

[AyrshireK in reply to dexiondave]

You should be able to phone them too, when any complications or concerns such as this arise.

[dexiondave in reply to AyrshireK]

I will try on Monday. Thanks

[Lam1e]

As Ayrshire K says you really need to get some advice ASAP! Are you feeling as if the ascites is building up again and now draining away? Is it a rocket drain you have? as with that I thought you needed to be seen by a District Nurse every week to ensure it is working properly. The only other drain I have heard of is an alpha pump but believe they can be managed by you, your nurse or consultant via an app!

Pre transplant I would regularly drain 6/7 litres every 10 days, this was always done in hospital, however it never went away and I didn’t have a permanent drain inserted.

Hope you get it all sorted out🙏

Lesley

[dexiondave in reply to Lam1e]

I have a tunnel drain which I believe to be quite new. I do all my draining at home and never see anyone concerning this procedure.My instincts tell me it’s good news to drain less but I am not sure.

Thanks for your help.

[Bikafella]

I started suffering from ascites about 3 months before my liver transplant. Had a massive build up of fluid which they'd only deal with during the operation. It was six weeks later when due to be released that the fluid had more or less finished. If your drain is reducing from 9 to 1 litres a week then at least for the time being things are improving. There's no way they can tell you when it will finish I suppose....

[dexiondave in reply to Bikafella]

Hi, thanks for your input. My condition is terminal, I’m not suitable for a transplant. I’ve had the drain in for almost two years now, before that I was in hospital every four weeks for draining. I’m hoping draining less is a good sign but I’m just not sure.Thanks

[Bikafella in reply to dexiondave]

Sorry to hear that you say it's terminal. Obviously your health team should be given you all the advice you need to manage your condition.

[cammeag]

Hi Dave. Ascites and amount of fluid are a reflection on the health of your liver. If it’s reducing it IS good news but, as you’ve been advised, please check with your liver consultant. Can I ask: why are you not suitable for transplant. ?

[dexiondave in reply to cammeag]

Thanks that’s good news. I am told my heart would not be strong enough to get through the long operation. This was from Addenbrooks, they have now sent me to my local hospital as there is nothing more they can do. At the time I was given three years, I am now in the third year but feeling fine.

[andy-g]

I used to weigh myself every day to monitor fluid weight gain, in the end I was draining 14 litres but it corresponded to gain in weight it only stopped after my transplant. Have you been able to match gain to loss and is your weight more stable now. But I agree you need answers. I hope you get a good result, any changes are worrisome.