Living with Acites

[Robsar17]

I am finding it so hard to live with the Ascites draining is increasing alarmingly fast only just over a week and he needed another drain any advice ??

[BetulaT]

Hi there, welcome to the forum - there are lots of lovely and knowledgeable people here!

Is your partner taking diuretics e.g. Spironolactone or Furosemide? My husband really struggled with ascites and needed frequent drains but it's all under control now since they increased his diuretics. Low salt diet helps too.

[Robsar17 in reply to BetulaT]

Hi yes he has had both of them he doesn't take his medication properly furosemide didn't suit him he blamed it on him fitting and having vivid dreams and deja Vus he is epileptic on Lamatrogine so tye prescribed Spironolactone but when he went in 2 weeks ago put him back on Furosemide which he hasn't taken he was on the diuretics in hospital for 2 weeks and was drained twice so sort of think his Ascites is drug resistant.

[AyrshireK]

His liver is seriously decompensated if he has ascites this bad. He needs to follow a low salt diet together with taking his diuretics. I note you say he has alcohol related liver disease and that he 'thinks' this is just going to get better by itself. Is he still drinking? Is he under one of the transplant units.

Whilst it's possible that diuretics and draining can remedy the ascites there may come a stage when it reaches what they call diuretic resistant and nothing will get rid of that other than potential liver transplant & diuretic resistant ascites usually bumps someone really quickly up the list of priority.

To qualify for assessment for transplant in the UK a patient usually has to have a minimum period of proven alcohol abstinence (usually 6 months). If he has reached that stage you want to be pushing for him to be referred to a transplant unit - they prefer to see patients too earlier rather than too late ............... because getting to too late stage limits the time a patient can possibly wait or they can become too ill to be transplanted.

Hubby is in a poorly way if he is being drained so often.

Katie

[Robsar17 in reply to AyrshireK]

Hi Katie thank you for your reply I have read so much stuff and this is what I assumed they told me in hospital it did t look like his liver would regenerate and it was a maintenance approach with diet and drugs .....he was epileptic before this alcohol linked and he never took that medication properly and he doesn't take any if this properly either !!He hasn't gone in again today as no beds and has chosen to just ignore it I know it's horrible going in and the procedure but you would think he would be desperate to have it done it's very hard and I just feel hopeless not knowing where it will all end !! Robsar17

[AyrshireK in reply to Robsar17]

Cirrhosis can't go away - whilst it's possible for a decompensated liver to return to a compensated state it can't ever regenerate to be a healthy organ again. Once cirrhosis has fully formed it's a case of monitoring and treating the resulting side effects of cirrhosis. If your partner is demonstrating a non-compliance with medical regime (meds, medical instructions, appointments etc.) then he is unlikely to ever qualify for transplant because of the strict regime of post transplant medications, ongoing monitoring and such like.

Has he stopped drinking? If not then his liver will continue to deteriorate - he's already decompensated, next stage is likely to be full on liver and multiple organ failure.

I would be very concerned about his continued denial because without accepting how poorly he is then this isn't going to end well.

My hubby has cirrhosis, diagnosed in April 2012 after a massive variceal bleed, at that time his liver was deemed decompensated. He was assessed and listed for transplant in 2014 but stabilized enough to be taken off the list. His condition is totally unrelated to alcohol as he's life long t-total and it's due to an auto immune issue. He is fully compliant with all medical regimes and if a doctor told him to stand on one leg and sing he'd do it if he felt it would help his position. The patient has to fight this thing to stand any chance of improvement - taking proper nutrition, all meds as prescribed and undertaking any and all tests, scans, treatments etc. My hubby is now compensated, cycles every second day or so and makes the most of every good day. He's not 100% fit by any means but he lives his best life and it is possible for a decompensated liver to stabilize but not if it continues to be attacked or treatments not taken properly.

I do wish you all the best because you've potentially got a rocky road ahead.

Katie

[Robsar17 in reply to AyrshireK]

Hi Katie yes he has stopped drinking but the denial is hard to deal with he also has a terrible cough which I forgot to mention thank you for all your advice it really helps Sarah xx

[AyrshireK in reply to Robsar17]

The cough needs checking out, obviously omicron variant of covid still floating about BUT also when a patient has cirrhosis & ascites you can end up with lung issues too.

[Robsar17 in reply to AyrshireK]

It's been noted but is it not due to the pressure from all the fluid he has had it for months has a PCR each time he goes in .....he just is so very unwell ☹️Sarah

[Zukosmile07]

Hello Robsar, could you please give us some more information about the diagnosis and treatment he is having, medication and advice he has had so far. Like what Katie said if he is taking diuretics and still has ascites fluid building up there is a good possibility of decompensated cirrhosis stage 4. I know this because I had it. No matter how many tablets I was taking, I still had to be drained every 2 to 3 weeks. Little more information please......all the best Danny x

[Robsar17 in reply to Zukosmile07]

Hi thanks for getting back to me he was diagnosed with decompensated liver disease secondary to alcohol he was on Furosemide but fitted as is epileptic so changed to Spironolactone but he doesn't take it properly or any of his medication...however he is filling up at an alarming rate so not sure they work at all ??He isbtvon a transplant lust it's not 6 months until march 7th but not sure he could cope as mentally not in a good place and totally in denial about it says it will repair itself it's tye only organ that does !!In hospital they told me it looked likely his wouldn't be ableHope that Helps🫑 to repair it would be maintainable by diet and drugs .... Hope that helps thank you Robsar17

[Hidden]

Hello,welcome to the forum. This must be a really difficul time for you - physically and mentally exhausting. This is particularly the case when the person concerned is in denial. I do hope you have good support for yourself...

regards

[Robsar17 in reply to Hidden]

Thank you. It's a daily uphill struggle I don't know if he is telling me the truth about it all either .....talking to you all is really helpful Robsar17

[Zukosmile07]

Robsar is he still drinking, you seriously need to convince him to take his meds and eat healthy, try to exercise and this will help his liver in the meantime. Then try to get a full diagnosis from the consultant/specialist to see how far his liver has gone.

[Robsar17 in reply to Zukosmile07]

No not still drinking he is very sly and doesn't want me to go to the next consultant meeting I wondered about asking to speak to consultant but guess not without permission from R??

[Ewife in reply to Robsar17]

I think you can speak to secretary or something and tell them your difficulties or concerns - but they will not be able to discuss his health with you without his permission. I would do this, as it will help the consultant to see that a) he has a carer, someone who can work with him to improve things, and b) see the other side of the story.Atb

Xx

[Lam1e]

Hi Robsar

It is very difficult to accept that your liver is not going to regenerate. I was sure mine would! The diuretics were caused me to have an AKI, so the Parascentesis was the only thing that was helping, even then for a couple of months I was still sure it would regenerate. When the Dr and nurse came and told me I needed a transplant, I was very weak, very scared and in denial! Even then I wasn’t convinced! I eventually realised drains and drugs were not going to keep me alive for long. Once that happened I changed my attitude and worked hard, with dietitian support for nutrition and then walking to get me fit enough to be assessed for transplant!

The only big thing lacking was counselling or something similar!

It’s not an easy road, and it’s small steps🙏💜

[Zukosmile07 in reply to Lam1e]

Well put... I find it hard to talk about the stress side. I went through so many different stages of depression, hope. Back to "there's nothing we can do", dealing with dying, back to hope, then to relief I'm on the transplant list, to worry I'm getting impatient and suffering, then admitted with gallstones, then kidney failure, hope and relief I've had a transplant!!!. Now that is hard to write let alone express and nowhere near to what really happened to me. All those emotions and feelings awful and ascites drains every 2 weeks..... All my savings are going, am I going to be able to work again........ Wow. If you ever need to talk I will listen because I didn't have this site going through all the stages, I only found out about it when transplantation was mentioned. Years all bottled up talking with people who have no idea how to sympathise or can't grasp why you can't get up, being sent home from hospital feeling worse than when you went in. (Rotherham hospital I don't mind saying) Good luck with everything and sorry about the joys and tribulations of decompensated cirrhosis. 😜

Danny x

[Robsar17 in reply to Lam1e]

Hi thanks for your reply it's been a stressful few days and he still hasn't got a bed to get another drain he was told to go in via A&E but is resisting he has zero pactience under normal circumstances let alone now ....my question is how long can this ver recurrent ascites go on before his body gives up or something awful happens ??He has agreed I can go to his next consultant appointment but I will believe that when it happens Sarah

[AyrshireK in reply to Robsar17]

If he's been instructed to go to A&E then that's exactly what he should do, a build up of ascites becomes a medical emergency if it isn't drained soon enough. He could develop spontaneous peritonitis or other infection and if that occurs he's going to be in bother, he could also potentially develop kidney failure. Whilst I understand he's inpatient his liver issue won't wait, if he doesn't start to acknowledge how poorly he is he hasn't got much chance of getting better. Non-compliance with medical regime gets a dim view if a patient goes on to have a transplant assessment and without t/p or a massive turnaround in his condition he isn't going to get a lot better. Can't be inpatient when you are sitting at home waiting for the phonecall from transplant team - some of the lengths of wait people have had here.

Has he seen the BLT page on cirrhosis where it details the various stages of the condition? britishlivertrust.org.uk/in...

My heart goes out to you as you try to support him when he doesn't seem to want to help himself. I do hope he lets you go to his appointment because it's the only way both of you get to hear what is actually being laid out to him and you can have your say too as to what you see at home.

Katie

[Robsar17 in reply to AyrshireK]

Hi Katie Thank you so much for your reply you are so knowledgeable and I appreciate your time ....

No change here still hasn't gone in and ignoring A&E option so looks like another weekend of him struggling to get up of the sofa and being vile !!!!

He is totally in denial and unless he wakes up and does everything he can he won't get better I could not imagine him having a LT neither can any of my close friends who know all that has gone on ......

He doesn't know I am on here he would just scoff which is a real shame because it might just help him !!

He has always been a narcissist and I have been trying to get out of this very controlling relationship for the last 10 years I finally moved out and back to my own place last year then this all kicked off in September so bit by bit I am here more than I'm not with all my stuff at mine !!I could move back in because he is very very scared underneath his bravado but I need a bold hope to keep a shrewd if sanity ....I lost it last weekend I could barely function he said oh you need a break but it last for 5 minutes and he reverts back to himself and later said I don't know why your stressed 😱

I wake up every day and come home after work wondering if he will be collapsed on the floor I think about it all constantly and worry if I take my eye off the ball something bad wil happen!!!It really is a living nightmare ☹️but thanks again your support really helps Sarah xx

[AyrshireK in reply to Robsar17]

I feel for you hugely, my poor hubby would do ANYTHING if it could do anything to help his diagnosis but there is not a thing he can do other than keeping himself as well as possible which he does with his walking, cycling etc. etc.

It sounds like Rob actually needs a huge wake up call - like actually ending up seriously poorly in hospital to perhaps waken him up to the realities of his situation.

As regards yourself, you really need to take care of yourself, your situation sounds like a nightmare and you don't deserve to be treated in this manner from someone you are trying to do your best for. I'd be very wary of moving back in full time. Sadly we have too many ladies on here (and the occasional gent) who have lived with a partner at this stage of illness and denial - if he's not letting you 'in' and being nasty to you and controlling then what are you getting out of the relationship? Only more stress and heartache. I'd leave him be for a bit and let him realise himself that he needs help (big style).

You look after yourself. At some point and probably in the not too distant future he's going to end up admitted to hospital because this is going to reach crisis point.

Katie

[Robsar17 in reply to Robsar17]

Hi Katie hope all is well with you both quick question I noticed Robs uribe is dark yellow and frothy am I correct in assuming this is Kidney related??Thanks Sarah xx

[AyrshireK in reply to Robsar17]

I wouldn't like to say, totally unqualified to offer any comment on what that might mean. Really dark cola coloured urine would be a massive concern, sligthly darker than straw coloured usually means the person is dehydrated. Obviously, it would be ideal if he would see a doctor with a sample. All sorts of other issues can cause darker urine than normal.

[Zukosmile07]

Hi Robsar, I had a direct line to the liver nurses (he should have one) and they always advised me to go to A&E sometimes they would take 1 look at me and be admitted straight away. When there was a shortage of beds I had to wait. 17 time's I had drains from January last year to November. He needs to take his spironolactone (400ml is the max, with weekly blood tests) it will slow the ascites fluid down but he has to stick with it. Right I got that used to waiting in A&E I would take sandwiches and drinks also my tablet with films on. I would get settled in and sit around even lay down like I would at home. Ascites was horrendous and you have to find coping mechanisms. I looked 9 months pregnant every 2 to 3 weeks. Encourage him to find hi coping mechanism..... good luck....

Danny x

[Robsar17 in reply to Zukosmile07]

Hi Danny thank you for your reply can I ask what stage you are at now ??R just isnt dealing with this he is adament he will get better it's just taking time ??It sounds like you were the same he had a drain on 27th Jan and less than a week he needed another .....He has Spironolactone but he doesn't take anything properly he thinks he knows best ....I am really struggling with his secrecy and hoping to go to next consultant appointment but my guess is he will find a way to stop me it's hard to deal with all of this when I am just second guessing everything!!Sarah xx

[Zukosmile07 in reply to Robsar17]

Hi Sarah, if he is getting drained every week he sounds the same or similar to me. I took my medication just so I got an extra week or 2 before the next drain. I have had a transplant now and I needed 1 desperately. A transplant was my only cure. When I had my 2nd kidney failure I had to stop taking the diuretics because they can be harmful to the kidneys. They drained 18ltr's in 8 days. He has to take his condition seriously and the consultants and liver nurse Alice (liver coordinator) will be letting him know his options. He really needs to listen to the specialist's and do whatever they request to do and follow a strict diet from the dietitian while he is at his worst. Everytime he fills up with fluid it puts pressure on all the surrounding organs, stretching his stomach which leaves him prone to an hernia. (Happened to me).

Show him what I have written, see if he takes anything on board. Try your best and wish him some luck from me (who bloody knows)

Danny x

[Robsar17 in reply to Zukosmile07]

I forgot to say he does have Alice who he calls a coordinator...however she doesn't seem to be able to sort out any beds !!!!Sx