Diuretics no longer working

[MrsWorried]

Can anyone give me any advice about treatment when diuretics stop being effective? Hubby in hospital for 3rd time in 3 months for another drain, bloods are showing kidney problems, and doctor has mentioned that the liver is now so badly damaged he may have diuretics resistant ascites. He's also showing increasing signs of HE so no pumps / shunts possible. (And he still thinks he's OK to drink.....) Doctor wonders if he's got alcohol related brain injury that's preventing him from making the connection?

It's tough.

[AyrshireK]

Diuretic resistant ascites is one thing that gets people bumped up the t/p list since they are more urgently in need at that point. Unfortunately, that's not going to be an option in your case with his ongoing alcohol use.

You've got to prepare yourself for the worst because going on like he is he's on a one way ticket to multiple organ failure - especially with kidneys starting to strugge too.

It must be horrendous to watch your hubby suffering but what more can you do? Even medics aren't getting the message to sink in either.

You really need to take care of yourself and I hate to say it but make sure all affairs are in order.

Have you seen the 'Planning for the future' page on BLT website? It covers this period of time when treatment options start to wain. britishlivertrust.org.uk/in...

My thoughts are with you.

Katie

[MrsWorried in reply to AyrshireK]

Thank you Katie, I will look at the BLT page. I have to hope he might "see the light" but realism suggests otherwise. Such a shame.

[Readlots in reply to MrsWorried]

Katie always gives such sound advice. Have the hospital talked about a palliative care referral? Sometimes you have to ask and it may not be appropriate if he is going to remain in hospital but if he’s going to come home you will need the support in place. Our hospital made a referral before my Mum came home and we had support from the hospice and the community nurse team. Thinking of you, what you’re dealing with is so hard.

[MrsWorried in reply to Readlots]

Thank you Readlots, so far no one has mentioned anything. I am heading back to the hospital this pm (100+ mile round trip) so I'll ask. I'm not sure if they were going to try diuretics again. Main concern this time has been confusion which is worse than before.

[MrsWorried in reply to Readlots]

Hi again Readlots, sorry to bother you but can you give me more info about palliative care referral? Seen hospital doctor today, not consultant, but she was lovely and knew hubby's details. Basically liver and kidneys in a bad way, no chance of diuretics anymore. HE will continue to be an issue so lactulose now part of daily routine. He is still in hospital, going to have scan b4 consultant makes plan for ongoing care but they hope he will come home. Will need more close monitoring and draining. 50/50 chance of surviving another year.

I would like to have some support at home, especially as the hospital is min 90 mins drive. Do you think it's possible?

[Readlots in reply to MrsWorried]

Hi, glad you had a good conversation with a doctor today and that they are going to have a plan for ongoing care. When they’ve done the scan and come up with the plan ask them if a palliative care referral is appropriate at this stage. They can run palliative care alongside the transplant process, but some consultants aren’t aware of that. They may have a palliative care team at the hospital who can put the support in place for you. If not your GP should be able to access palliative care in your area.

I know the level of support varies from area to area. To give you an idea, the hospital did a palliative care referral for Mum before she was let out of hospital. She had a visit from the community nurse the first week she was home and the hospice coordinator visited that week too. They arranged for occupational health to come and bring kit (an inflatable cushion, perching stools, zimmer frame, steps to help mum get into bed, bed rails). We managed on our own until Mum couldn’t shower. After drenchingnus both she said “I think it’s time for the professionals!” Then the community nurse arranged for carers to come in. Once every other day to start with building up to 4 times daily at the end. The hospice will also help with benefit applications to help cover the costs of other help eg cleaning, gardening. The community nurse also did a referral for Marie Curie night sitters to give me a break so I could sleep. It was all covered by NHS funding. I know we were really lucky to get so much support. I hope you get what you need too. Keep asking, eventually you’ll find someone who can help.

[MrsWorried in reply to Readlots]

That is so helpful, thanks very much xx

[Readlots in reply to MrsWorried]

You’re welcome - hang in there and make the most of the time he’s in hospital to look after yourself. The hospital trips sound a nightmare as it’s so far from home. Do some nice things for yourself while he’s being looked after

[MrsWorried in reply to Readlots]

Thanks, it's a lovely journey in good weather. Unfortunately there's not much of that right now!