Hi there, wondering if anyone has had a shunt fitted to help with ascities?? My mum is in a terrible state at the moment. 1st drain went really well, belly and legs went down. She picked up. Put nearly a stone on in weight. Then bloods shown low sodium so drs took her off water tablets. Within a week another drain needed, didn’t go well. She is now huge and is due for a drain 1 April after having to wait 3 weeks for an appointment. Fluid is coming out of her legs, she cannot walk and in lots of pain. The itching isn’t easing but getting worse, she now looks like a burns victim. Drs are baffled at why she is itching so late on. I was under the impression they made you better but worse, when your mum is wanting to end her life it’s really hard to watch helpless. But I am hoping she will qualify for a shunt and will speak with the consultant Thursday and bottom this skin problem. Xx
Mum has ESLD: Hi there, wondering if... - British Liver Trust
Mum has ESLD
If you are talking about a Transjugular intrahepatic portosystemic shunt (TIPSS procedure) then you need to be very aware of both the pros and cons. Although excellent for dealing with portal hypertension and ascites this procedure can make Hepatic Encephalopathy a lot worse since blood is in effect channelled quickly through the liver with little to no detoxification and can lead to an even greater toxin build up in the brain.
Reading back your previous posts Mum is only 66 and I would be pushing at this stage to see if transplant is in any way a possibility, mum needs to be referred to a transplant centre and assessed if possible a.s.a.p. If alcohol is well and truly in her past then they should look at this as a course of treatment in light of her current severe symptoms.
Katie
Right I see. I have spoken about transplant with one of the hepatic nurses and she told me it’s really complex and there are lots of factors to consider. The drs has already said due to her age they doubt she would be considered which really annoyed me. I will be seeing the main consultant on Thursday and I will ask all these questions. I don’t like the idea of the shunt but I just wish they had not taken her off the water tablets as she was doing so well. She had colour back in her cheeks. Xx
Which hospital does she go to? Is it a transplant unit? If not then she needs to be referred for assessment. A doctor in a local hospital can't make the decision. Transplant assessment involves a lot of tests which look at the patients liver health i.e. is transplant needed and then they look at is the patient actually fit enough to undergo the operation. This is where age comes in because advanced age can make a person more frail, more likely to have issues with heart and lungs and things outwith the liver that might make transplant too risky. After all the tests, chats and assessment a multi disciplinary team sit down to discuss the patient and make the decision to list or not.
Whilst 'advanced age' is a relative contraindication to transplant the threshold usually is around 70 + though I know of a lady who was transplanted at 71/72 years old.
In light of mum's current symptoms I would definitely be asking the question.
Katie
She’s at both Royal Hallamshire and Northern Gen. it’s the Liver wars she goes too but not sure on whether this is a transplant unit. I will speak with and ask what the procedure etc. Thanks Katie you’ve been a big help x
Neither of those are transplant hospitals - your closest is probably going to be St. James' in Leeds (or Queen Elizabeth in Birmingham). I would absolutely PUSH for mum to get a referral. If she was to be assessed they would also see what interim measures can be put in place to improve matters, even TIPSS might be a worthwhile option if she was also listed for t/p. Give her something to fight for.Obviously I can't say whether she'd be accepted or fit enough but without t/p she isn't having much of a quality of life.
Push for her to be assessed or at least referred to transplant unit a.s.a.p. They prefer to see people too early rather than too late and as mum has been sober for all this time that wouldn't be a barrier but by all appearances it's possible something else was going on as well as her limited drinking.
Rooting for you all, Katie
My grandmother had the TIPS procedure and she did very well afterwards. She had had some gastrointestinal bleeding. I seem to recall they couldn't decide if she had hepatitis (could be the tests available then were not able to detect it) but she definitely had cirrhosis. She was constantly bruised and bled profusely with the slightest nick. I recognize now she was jaundiced at times, but she was always sharp as a tack.It annoys me too when doctors mess around with the meds!
I agree with the idea that your mother should be seeing a liver specialist, liver transplant is a very huge operation not without considerable risk.
My understanding is that the TIPS procedure is sometimes favored over more invasive surgery. In my grandmother's case, she didn't want a transplant for religious reasons.
Hi, thanks for your reply. The consultant she is under is a liver consultant! I am seeing him on Thursday as mum is in for another drain. Hope your Nan is better. Take care x
Thank you, she did very well afterward the procedure. That was more than 20 years ago love, she is an angel in heaven now.
Hi Toffee girl, how is you mum today? Did she/you decide whether TIPS was best for her?
Agree with Katie! Push for her to be referred to a Specialist Liver Unit, who can do a full assessment and give you options! Age should not be a barrier for Transplant and I know people in their 60’s and 70’s who have had successful liver transplants.
Pre transplant I could not have the diuretics as they were damaging my kidneys and I had to have regular m and planned drains, so I was not left to get uncomfortable and had a good quality of life! I think you need to push for a drain ASAP and ask for planned appointments! I did not have TIPS as my team felt it was too risky and I was being assessed for transplant!
I hope you/your mum get the treatment and care she needs!
Lesley
Hi Lesley. They only do the drains on a Thursday and she has had to wait 3 weeks for an appointment which is Thursday. She is under the the hepatic team and the professor we are seeing on Thursday is (I think) the main consultant. Thing is, there are so many different Drs ringing. So that is another thing I will bring up with him. The lack of communication between them as one doesn’t know what the other has suggested. In my eyes it’s all a mess. X
Glad she is getting a drain on Thursday, but from what you say about how uncomfortable she is it sounds to me that she needs them more frequently. I had drains every 7/8 days for 10 months pre transplant ( I did get listed for transplant and waited just over 4 months) and would drain around 6/6.5 litres! They kept trying diuretics but having to stop as my kidneys were being damaged! TIP’s might be what she needs and then she probably wouldn’t need the drains.
Itching seems very common and I have known people to have had antihistamines prescribed and certain other medications that have helped!
It is all very mind boggling, but write down any questions you have and any acronyms and ask! Don’t be frightened to ask! If there is/are liver nurse specialists they often help you understand things more clearly!
Also the nurses here are great and please feel free to message me if you think I can help! Though as mentioned the TIP’s was not for me.
Also has she lost weight? If so ask to see a specialist dietitian! I was very malnourished and seeing a dietitian really helped.
Lesley
She does need them but what can we do if she cannot get an appointment for 3 weeks. She has tried everything for the itching and nothing has worked. Like I said, she looks like a burns victim how her skin is that raw. She did lose a lot of weight but then she got her appetite back and gain nearly a stone in weight. But now now it’s the ascities and itching that making her uncomfortable. X
Hello , I can see our forum members are supporting you.
Please also consider calling the nurse led helpline on 0800 652 7330 Mon -Fri 10am-3pm.
The nurse specialists will be happy to talk things through .
Trust9
Cholestyramine drinks and rifampicin have totally stopped my itching which I suffered for nearly 20 years.
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