recurring aceties

[Mango5cm]

my son has decompensated cirrhosis and goes to a hospice once a week to get fluid drained - he has a permanent drain fitted . He is getting worried as the last three weeks they’ve drained 5. 7. Then 8 litres.

Does this mean his liver is getting worse ?

I’ve read that a TIPS procedure could help - has anyone had one ?

He hasn’t had any alcohol for a year and he has started to eat after 7 month on protein drinks.

No one has mentioned liver transplant . I’ve read that life expectancy is 2 year and he was diagnosed a year ago

I’d appreciate any replies . Thank you Carol

[AyrshireK]

Has he asked the question about referral to transplant unit? With recurring ascites that isn't being diuretic controlled, being sober etc. he should be looked touching base with t/p unit at least.

TIPSS might be a good option to deal with the ascites but isn't without it's own risks, many people experience a worsening of Hepatic Encephalopathy symptoms with TIPSS because blood is basically going through a canal through the liver, thereby bypassing the chance to have toxins removed, toxins end up building up and HE develops.

When hubby was suffering big time portal hypertension we said that we'd only consider TIPSS if it was a stop gap before transplant.

He needs to PUSH, actually ASK for referral to transplant unit. I think Freeman Hospital in Newcastle is your closest.

Katie

[Mango5cm in reply to AyrshireK]

thanks Katie -he wasnt well enough before to be considered for a transplant but he is eating now and can manage to get out of bed and walk in the garden . I’ll mention this to him . I really appreciate your help x

[AyrshireK in reply to Mango5cm]

The transplant unit have more resources at their disposal for getting him fit enough for transplant. You don't get assessed immediately, my hubby was under t/p unit care (in Edinburgh) for a year before they actually put him forward for t/p assessment. In that time he was under the care of an Edinburgh consultant plus had his endoscopies there and also saw a liver specialist dietician to get his weight up etc.

T/p units prefer to see people too early rather than too late. SO it is well worth him asking the question about referral - is he now seeing a liver specialist? You mentioned his doctor was retiring and an alternative wasn't appointed. (My hubby was seeing a local gastro who to be honest is well overworked and doesn't have specialist liver knowledge - he remains under care of Edinburgh now even though he isn't on transplant list/nor transplanted). Always worth being with the best doctors/team possible.

Katie

[Rshc]

my partner has alcohol related decompensated cirrhosis (diagnosed 23.12.21) and has been alcohol free since then. He is now on the transplant list. They do give the liver a bit of time to recover once alcohol has been stopped as it can take some months but what they said to my partner is that USUALLY (although not always by any means) after 6-9 months improvement usually slows.

At around 5 months my partners ascites and edema was out of control, he was not able to take diuretics at that time due to low sodium and he was re admitted. It was then they started to talk about transplant.

Is your son on diuretics?

I would echo what AyrshireK says, if the hospital don't mention transplant at least push for a conversation. My partner was appointed a transplant co-ordinator at our local liver unit before he was put forward for assessment, she was able to support us during the early part of the process. In my partners case it has been about 5 months from starting to discuss transplant to actually being listed.

The main thing you can do in the mean time is try and ensure he doesn't lose too much muscle so keep up with the protein, the transplant assessment is many different tests but they do need to ensure that the patient is strong enough to get through surgery.

[Mango5cm in reply to Rshc]

thank you so much for your reply .the doctors stopped the duretics and he has slightly low sodium as well . He has very itchy skin - does your partner have this ? His LFT are abnormal but stable with no further action needed. It’s confusing when the doctors say they look at his symptoms more than his blood tests . Best wishes to you and your partner x

[Rshc in reply to Mango5cm]

Once his sodium stabilises he might be able to get back onto the diuretics - that was the case with my partner - its worth pushing for this to be reviewed. My partner was quite itchy for a while but as he billiruben lowered that stopped

[Cat-B]

hi you must be very worried, is he on a no salt very high protein diet ( a ramekin dish every 2 hours by the clock was how I did it) I am 8 years post decomp diagnosis so there’s hope, be warned it’s a very hard and slow journey, if he’s willing to fight for his liver it’s worth it. I had 2 drains of 15&17+ litres during my 3 weeks in hospital and I said never again and the fight was on. Remember the slow and steady tortoise wins the race against the Jack Rabbit lol. If he wants to talk about a transplant then he needs to talk to his liver doctors and ask for a referral and assessment by the transplant team. Good luck, this must be harder for you to watch then for your son to go through. I’m here if you want to chat, rant, scream or cry. Remember to take care of you! That’s just as important as your son taking care of himself!

[Mango5cm in reply to Cat-B]

thank you Cat - your fight for your life gives us hope . He’s on a high protein diet but his sodium levels are low and the doctor Tells him to have salt . He has ok days ,bad days and very bad days . Thanks for your kindness x

[Cat-B in reply to Mango5cm]

who told him to have salt? His GP? If there’s ascites then it’s strictly very low or no salt, no processed foods, no alcohol. His ascities will only increase with salt! I would ring the liver unit and ask them exactly what diet they want! It doesn’t matter what his Serum sodium is reading, until he can increase his serum albumin and total protein the ascites will continue. The BLT have a 24 hour help line and you can talk to their nurses. Please no more salt x

[Mango5cm in reply to Cat-B]

thank you so much - I’ll ring them . Things are so difficult to understand x

[Refs]

Hi, sounds pretty much the same as I went through.

I was being drained every fortnight, on average 10-12 liters a time.

also I was being fed by ng tube through the night.

my consultant recommended me to Birmingham to go on the transplant list.

but I was told that I probably had a year without a transplant.

I waited 2 years with covid and everything else, but now I've had a transplant and there are issues with it but I'm say 70% now.

Katie gives very good advice, so you need to ask the question. Asap.

hope it all works out well for you.