Failed Ascites Drain with Decomensated... - British Liver Trust

British Liver Trust

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Failed Ascites Drain with Decomensated liver Cirrhosis - Now what?

swbsoniab profile image

Hi. My husband is in a hospital with Liver failure and kidneys have also failed but been filtered. He has bad ascites and is struggling to breath, you can hear him struggling and his breathing is gurgly. They have tried to drain his ascites three times but he is haemorrhaging each time, so no drain can be done.

they think he is bleeding internally and he has huge bruises on his tummy now.

Billirubin is in the high 500's, Platelets are very low.

What happens now? His organs are struggling as under so much pressure.

Any infomation would be really appreciated as I just do not know what happens now.

15 Replies

Without being too melodramatic or negative - things are pretty touch and go at the moment and you may need to prepare for the worst. If his liver and kidneys have failed and they are struggling to drain him resulting in all the symptoms you describe he is very, very poorly just now. Medics will do their all to help him battle back (and some people do) but do prepare yourself that he might not do so.

If he does come through this then alcohol will absolutely need to be a thing of the past or his days are numbered.

Thinking of you,

Katie

swbsoniab profile image
swbsoniab in reply to AyrshireK

Thank you for your fast reply. Are there options if a drain cannot be done and what would the bleeding be whilst trying? He's been banded twice already. I have seen him bleed out twice over the last few years and he just hasn't stopped drinking and more recently been having a 70cl bottle of vodka every day.I know he cant have a transplant so I understand he may not be coming home. I just cant seem to get much information from the hospital as i fear they are trying to protect me from the trust, but i would rather know so I can prepare.

Many thanks x

AyrshireK profile image
AyrshireK in reply to swbsoniab

Sorry to hear and to report that the situation seems rather grim. Obviously to drain him they need to pierce his belly and with low platelets and clotting difficulties any small cut can bleed profusely which is probably why he is haemorraging as they try to insert a drain. The big danger now is the fluid will either become infected or just the fact his lungs are compromised with the fluid build up can lead to massive infection. Obviously they don't want to tell you yet that this could be the end because they are going to fight every step of the way to bring him back but reality could be that he might not battle back - this really can go either way at this stage. We have seen forum members who have come back from the brink and eventually go on to sobriety and transplant BUT we sadly also have many forum members who have been in your shoes and sadly lost their partners. There is no dressing it up but a death from cirrhosis isn't normally very pleasant.

The BLT does have a page about planning for the future which includes end of life care etc. I am hoping he does battle back from this and gets a wake up call but it doesn't sound like his two earlier dices with death from the earlier bleeds did that which is very sad.

britishlivertrust.org.uk/in...

Katie

swbsoniab profile image
swbsoniab in reply to AyrshireK

Hi

My husband has been gaining around 2 kgs every few drains in fluid, the y cant drain and keeps bleeding and now fluid in infected. As I type he is being transferred to St Marys hospital in London. He is no liver function and kidneys are still drying out. He has been internally bleeding and passing black tarry stools. My question is what can be done for him now? He is going there to try an ascites drain, but what happens after that. His liver is not working and fluid will keep building up. his platelets need replacing constantly. I just need to know now what is going to be the likely outcome.

Billirubin still in the high 500's and he is struggling to breathe due to the fluid. He looks huge, legs, feet and tummy full of fluid.

Being an alcoholic surely he isn't going to be having a transplant?

AyrshireK profile image
AyrshireK in reply to swbsoniab

I can't answer with any certainty nor really expand on what i've said previously, they are obviously battling to bring your husband through this crisis but this is a knife edge situation at present and could go either way.

You really need to have a chat with his medical team - they should be giving you the full ins and outs of where things stand but sadly I wouldn't imagine that transplant is an option given hubbies very recent alcohol usage. At the moment I would say they are battling to save his life.

Thoughts with you at what is obviously a horrendous time.

Katie xx

I'm so sorry to read of your poorly husband. as Katie has mentioned he is quite sick with multiple issues.

I'm praying for you all that he will pull through..please look after yourself and your little girl whilst going through this difficult time

In my thoughts..Linda x x

Trust5 profile image
Trust5Partner

Hello,

As your fellow forum members have indicated your husband is extremely sick. It is really important that you have chance to sit down wih your his medical team so that they can update you on his condition and the possible outcomes. Speak to the ward manager and ask for a meeting to be arranged asap.

I do hope you have some support for yourself in what are very difficult circumsatnces for you and the rest of the family.

We have a free telephone helpline if you think it would be useful to talk to one of our liver specialist nurses: 0800 652 7330 Mon-Fri 10:00 - 15:00

kind regards

I'm so sorry for you going through this. I hope you are surrounded by lots of love and support.Sending lots of hugs your way

Xx

Although the circumstances around my own diagnosis were different, I was in a very similar situation and can identify with everything you describe. He is incredibly sick. I don’t know what kind of headspace he’s in at the moment, but all I can say is that he has to want to fight.

I actually gave up at one point and owe my life to one kind registrar who made me see that I needed to fight. Just the will to live is so powerful in turning things around. I really hope he’s ok x

I had the similar scenario. I had to fight as well. We went toe to toe. I said to my own liver your inside me not the other fxxxng way round. As I was being booted from within. Stay strong please. Blue wow.

Sorry you have to push the team. Drains I have had 17 since January. He really needs the drain but Katie is right. I am feeling for you right now. The pressure is intense. Please get the drain in somehow. X

Every time they try to drain he haemorrhages so they have to stop, he then went into shock when they did the tap to take a small amount for testing. the fluid is now infected. his platelets are too low to do a drain so they have been transfusing platelets but now transferring him to St Marys in London. I just dont understand whats now happening to him. I am asking daily and they just keep saying they are running out of options. x

I don't know your availability. But I'd would be there with him. Because you have to be strong mentally. BlueAster is right. Something has to come from somewhere for any kind of improvement. There must be the operation where they can go in with the ultrasound and extract fluid directly from each pockets. I had these things done to me and it's always down to the team. I would be there with him and give him some strength and take some of mine with you as well. 🤜 The best of luck and we will all be thinking and hoping for the best. I promise you that.

Hi

He is now in a hospital almost impossible for me to get to. We have a 2 years old and i work full time. Trying to pay the mortgage on my own now so work is a must. I guess i will have to call in the hope a doctor is available to talk to.

Today they said they cannot drain as levels are too bad... the fluid is red and infected so they said it wont be till next week they look into draining. Im not sure how he will survive with no drain as he is struggling to breath now. I feel this isn't going to be a great outcome. He's becoming irritable with me and the nurses. Over the last few years i have taken so much time off work that i just cant do it anymore. I need my job as now the only earner. Everything is just awful. xx

I cannot express how much I am feeling for you right now.

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