Permanent drain for Ascites

[MrsWorried]

Evening everyone

Just looking for some info re a permanent drain for ascites. Hubby had two drains whilst in hospital last month, and now his belly is huge and taut (and painful) again. This means he's needing a drain every 2 weeks, roughly.

Where we are this means GP referral and admission to hospital via A&E, there is no day unit,where it can be done. Since his initial meeting with gastro consultant last year he has not had another one, and I have no idea when he will get his next outpatient appt. (I think they get put back each time he's admitted to hospital and inpatient and outpatient don't talk to each other). So, in short, I have no contact at any hospital to call re drain.

Should I be asking about a permanent drain? Anyone has one or assists someone with one? Is it DIY or does nurse come?

Thank you!!

PS smiles all round, Scotland retained the Calcutta Cup!!!!

[Mango5cm]

hi - my son had a permanent drain fitted in October at a local hospice . He was referred by the hospital consultant . He has to go weekly for a drain and it’s usually 8 -10 litres. If he only needed 2 -3 litres a district nurse could do home visits to do the drain but because Stephen has a lot of fluid he needs an albumin replacement infusion which can’t be done at home .

Hope this helps . If I can help in any way please ask me , Carol x

[MrsWorried in reply to Mango5cm]

Thank you, I forgot about albumin. He's always had this after a drain. Probably means hospital as an inpatient. He's just so reluctant as they keep him! Last admission 3+ weeks. Thanks Carol xx

[Mango5cm in reply to MrsWorried]

is there a hospice near you that could do it ? Ours is only 30 minutes away and he gets patient transport provided . Everything is so difficult - we just have to keep on trying to do the best we can . Thinking of you and sharing your worries Carol xx

[MrsWorried in reply to Mango5cm]

We do have a small hospice but I've not made contact so far. Do I do it directly or via GP? X

[Mango5cm in reply to MrsWorried]

you could ring the hospice first to see if they do this as a day treatment and then contact your GP . Good luck x

[MrsWorried in reply to Mango5cm]

Good idea, thanks x

[X1702 in reply to Mango5cm]

I got Ascites while being in the hospital. I got an infusion twice which was able to drain about 5 liters. I don’t know the name, but you better ask your doctor about this alternative.

[Rshc]

hi is TIPs an option? I know it’s not suitable for everyone

[MrsWorried in reply to Rshc]

Morning, I don't think so as he has had episodes of HE. I will ask again though.

[Starprincess]

Starprincess had one fitted before Christmas. Now, District Nurse comes 2-3 times a week and drains 2ltr per visit, any more Albumin would be needed. For more convenient and she feels better for it, no more pressure pressing on diaphragm, affecting her breathing; no more pressure on her stomach affecting her eating. Only negative, permanent tube in your side!

[MrsWorried in reply to Starprincess]

That sounds ideal, I will ask DN as she is coming to take blood tomorrow. Find out if they do it in our area. Thanks for advice x

[Shep666]

Hi

Has your husband been prescribed diuretic pills?

[MrsWorried in reply to Shep666]

Yes was up to 400 mg Spironolactone and 80 mg Furosemide at one point but had to cut right back to 100 mg Spironolactone as they were damaging kidneys.

[sophiaS1980 in reply to MrsWorried]

Make sure he is eating boil eggs everyday to get his albumin up.

[MrsWorried in reply to sophiaS1980]

Wish I could get him to eat something! He used to love eggs, now he barely eats anything. Good idea though, thanks xx

[sophiaS1980 in reply to MrsWorried]

Have you spoken to the doctor about his eating habits, they might give him something (feeding tube)? They won't if he is still drinking, i hope he has stopped to improve his health.

[MrsWorried in reply to sophiaS1980]

Thanks Sophia, he has spoken to various dietitians and I know what he should be eating but he just doesn't want to. Today's diet - one yogurt, one banana and 2+ bottles of wine. He's now convinced he's going to die soon so there's no point stopping. Might as well go out with a bang (but he complains about how ill he feels!) Think medical teams are fed up with him. They detox him, drain him and send him home where he undoes all their good work. Aagh!!!

[pault107]

I've had a permanent drain fitted (Rocket drain) and a district nurse comes to drain it every two days, 2 litres each time. I have to go to the hospital once every two weeks to have an albumin infusion.

[MrsWorried in reply to pault107]

Thanks Paul, not heard of a rocket drain but I shall ask.

[Mango5cm in reply to pault107]

thanks Paul - my son has 8 to 10 litres drained every week -we’ve hoping it reduces . Pleased you are doing well - best wishes Carol

[Mango5cm]

hi - I hope you don’t mind me asking but how long have you had the drain ? My son had a rocket drain fitted in October and I worry about how long he can carry on being drained ? Thank you Carol

[pault107 in reply to Mango5cm]

I've had a rocket drain installed for two months now. It can be painful if the fluid is completely drained and the bottle is still 'sucking' (the bottle is pre vacuumed). In my case, the amount drained is getting less with each drain. A good sign for me, although I have been completely abstinent during that period.

[Phoenixv]

hello all I can say my husband did a year every two weeks had drains. Then one week it never came back and never had any more drains don’t know how are why. He did think about having a permanent drain but he did not qualify so he could not have one. As he did not qualify to have a liver transplant which he would have loved to have had.

[MrsWorried in reply to Phoenixv]

That's interesting, how after a year no more drains needed. I am going to investigate what options are available where we live. Thank you.

[Snips71]

Hi I’m following this as so far my hubby has had 5 drains within 6 weeks. It’s once a week the week it didn’t happen was when he was readmitted to my ICU as his breathing was impaired. I asked about a drain like people have with peritoneal dialysis they said there is a drain called a rocket drain like someone else mentioned. But the risk of an infection occurring is high so they don’t always use that one only in palliative care. That’s where we go but other hospitals may be different.

I hope you get some answers

Suzie

[MrsWorried in reply to Snips71]

Thanks Suzie, in the end hubby was too ill for a permanent drain. Hope you find a solution for your husband and he keeps as well as he can xx

[Snips71]

I’m so sorry to hear this. Thank you for your well wishes xx