Ascites - what’s a long term drain or permanent drain feel like compared with being drained in hospital every 3 weeks?

[Bluescarf123]

My husband is in palliative care for liver disease being cared for at home. He has Ascites and has been having approximately 10 L of fluid drained every 3 to 4 weeks in hospital. The procedure involves an IR scan, because he has varies, placing in the drain and being in the medical day unit for six hours as the fluid drains out , sometimes successfully they can remove 9L or 10 L if the drain doesn’t work well they can remove 4 L . He is on the directics , they can’t increase the dose due to the kidney function and the directic is not working effectively enough , however he is not being drained every two weeks at the moment the hospital wants him to get worse , so they have to drain him every two weeks before they put in a long term train.

The Liver Trust and district nursing team have advised that a long-term or permanent drain , at home where the district nurses can remove the fluid as required, would make him more comfortable. he wants to be at home and not in hospital the fluid buildup restricts his appetite and his movement and his ability to be comfortable. The district nursing team have advised that he would be more comfortable and help his movement and appetite.

The question to this is anybody who’s actually had a long-term drain describe what it feels like? The medical professionals telling him medically what to do, he would like to know from a patient perspective what it feels like , is it painful all day? Can you sleep on both sides of your tummy? Even where the drain is? How painful and uncomfortable is it to have an all day every day ? Is it the same level of pain where the drain is, as when you’ve got it in the hospital? Thank you to anybody who can reply it will help him make the decision that’s related to patient comfort.

[Fabrica10]

Husband had a Rocket drain fitted four weeks ago. Some discomfort on day of procedure , no issues since. He sleeps on both sides of his tummy. District nurses come twice a week to drain around a litre usually. They are usually here for 30 minutes each time.

The benefits come really from not having to spend a day in hospital once a month. No need for blood test 48 hours prior and albumin infusion not needed as the drained amount is small. Husband usually had some leakage post-drain, we don’t have to worry about dressings and extra clothes washing any more.

District nurses say they can train me to perform the procedure eventually. Overall, our experience has been positive. Husband more comfortable and less stressful for both of us.

[Bluescarf123 in reply to Fabrica10]

Thank you so much for this reply. This is really helpful for husband to consider this option. Apparently, is a consultant lead procedure so we have to have a consultant agreeing to it but he’s definitely being drained every four weeks and has been since June so hopefully they will not enable this to go forward because it sounds like it’s making your husband more comfortable..

May I ask how many times per month your husband was being drained? The reason I’m asking is the consultants are telling us he has to be drained every two weeks to have a permanent drain fitted and only once in the last four months was he drained at two weeks and that’s because the previous drain didn’t really work.

[Fabrica10 in reply to Bluescarf123]

Husband was being drained every three / four weeks since December 2023. Typically 8 - 9 litres. Our consultant thought that was OK for a permanent drain. Your consultant clearly has a different view. The Rocket drain has improved my husband’s quality of life definitely.

[Glorydays2]

Hi, My Husband has a Rocket Drain fitted 4 weeks ago. He is in palliative care, being cared for at home also. He had been having a paracentesis every 2 weeks draining between 7.5 & 10 ltrs each time since March. He was not able to tolerate diuretics. He has been taking part in a REDUCe2 study for 3 months, at the end of this he could have the Rocket Drain fitted. We tried to weigh up all the pros & cons of hospital visits against home care with the District Nurse and Decided the Rocket Drain would be more beneficial. Sadly our story is completely different to Fabrica Story.

We have been very unlucky and had nothing but problems since it was fitted. Hubby was in a lot of pain, initially this had been anticipated would be the case. The drain site leaked, followed by the other site leaking with the ascites fluid, back to the hospital to have more glue on the wound. It seems that would be ongoing for about 10 days with stitches being put in taken out and more glue. this really did not resolve the problem, eventually after 2 A&E weekend visits the consultant suggested total bed rest, as the wound was not healing and this was the only way to stop the leaking and allowing the wound to dry ( 9 days in all). During all this he has still been experiencing a sharp stabbing pain, sometimes a few seconds, sometimes several minutes, this can happen when he is lying still or when he is moving (no pattern). This in itself is very debilitating.

The District Nurses are very good. The downside is he is having a drain every other day and no specific time as to when they visit. We had, prior to the drain being fitted, been able to get out and about every day. We were also told that I could be trained to do the drain, DN will not do this and the hospital specialist nurses seem to be trying to avoid this happening. I think that no one wants to take responsibility for training me. I would not want to do this all the time only if we wanted to go away for a few days to visit family. I am now trying to investigate how to get DN doing the drain in a different health care area.

His consultant has said she can remove the drain. This would mean he can go back to having the painful paracenteses, and all the discomfort that goes with it and regular trips to hospital. She also said they can put another drain in at a later date. My husband being stubborn has said 'its in now its staying in'. In the 6/7 months of having drains he needed no pain killers, now he has to take them on a regular basis.

Hubby has just had the first 48 hours pain free!! so I have my fingers crossed that we may have turned a corner with the pain. Apparently it is unusual to experience what my hubby has. I wish you well in what you choose to do. A

[Benwillfred]

Have you asked about the possibility of a TIPS procedure I had one in July this year and my life has been transformed.

[Bluescarf123]

thank you so much for the replies he’s really valued the responses.

unfortunately Tips procedure is not an option.

the price and cons of the long lasting train have been interesting I guess like every procedure different people respond in different ways. In the hospital drain is booked for tomorrow so we’ll see if the consultant will allow a long lasting drain or not they might wait for him to decline further until he’s drained every two weeks.

It’s really tough for him. The quality of life is very low when you’re just lying in bed all day with without being able to have a lot of movement appetite things that you enjoy life becomes smaller in fewer. Trying to keep him positive by looking at the good things each day.

[Bluescarf123]

update on husband‘s drain situation-

The doctor said that they don’t put in permanent drains for people with cirrhosis only people with liver cancer or secondary liver cancer. The doctor said that they do it for people in this position that have a ascities building up in one or two days. They don’t do it they said even if it’s the ascites needs draining every two weeks. Seems to be very odd because people on here have cirrhosis and they’re being drained with a permanent drain at home and also when he gets the point where he cannot physically get to the hospital that needs to be an alternative. My instincts are telling me we’re being fobbed off….

Does anybody have any views to share?

[AyrshireK in reply to Bluescarf123]

Are you in touch with your local hospice? They may be,able to offer hospice at home type support and do his drains at home rather than needing regular hospitsl trips.

[Bluescarf123]

thanks for replying Kate I read a lot of your posts and replies. I hope your husband is doing well..

my hubby’s been under palliative care hospice At Home since May hospice At Home and district nurses are the ones who have suggested the long-term drawing but it’s the hospital that are pushing back and it’s the hospital that have to perform it. Liver Trust helpline nurses suggest that King’s College London can do a permanent drain. However, the local hospital will have to refer him to Kings. And the district nurses are saying that they know the local hospital does these drains because they have palliative patients literally using them.

It’s very confusing…

[Glorydays2]

Hi Bluescaef123, my husband has cirrhosis (no cancer). We were told that the rocket drain is not routinely fitted, he was able to have it because he took part in the REDUCe2 study. Maybe you could enquire about this study and see if your hospital offers it?Speaking to the district nurses and asking if they have many patients who have rocket drains ,the answer was yes, but mostly for other conditions (lung etc) where the drain is located higher up the torso.

Hubby's stabbing pain has reduced, albeit it still occurs randomly. He is seeing a benefit of having less ascites drained at home. He is now accumulating between 300ml to 700ml every other day, down from 1.5lts. He is also eating a bit better. So we are seeing some benefit. He does tire more easily, this is probably due to the disease progressing? Best wishes Axx

[Bluescarf123]

thank you