How long can this go on for ???

[NICSAR17]

I am not sure quite how this works i have put all the information on the BIO i just want to know how long this constant draining can go on for will he just go downhill fast as seems to be continually losing weight diagnosed Sept 7th 2021 with Decompensated ARLD stage 4 hasnt had a drink since refactory Acites drained roughly every 10 days at the end of my tether very nasty and unreasonable but hard to tell as was a bit like it before seems to be getting worse !!

[Richard-Allen]

You haven't mentioned this in your profile post, but has your partner ever been diagnosed with Hepatic Encephalopathy? I ask this because I’ve come across a number of people who suffer from episodes of HE and who can appear to be rather mean and say horrible, hurtful things. They can also refuse to do certain things like refuse to take medication (including protein shakes) or refuse to go and see a doctor or even a hospital. They are even known to refuse life saving treatment.

I would have hoped that the consultant at the QE would have picked up on this and if they did you, could ask for your partner's “Conn Score” (West Haven score). This is an assessment of the severity of their HE condition.

A person with end-stage liver disease, (especially if it's due to alcohol abuse), will have to prove to the transplant assessment team that they are worthy of a second chance of life and that they have turned a corner and have dealt with their drinking habit/addiction. They will also need to be willing to enter into a contract to never knowingly consume alcohol ever again. They have to show a commitment and a determination to lead a better, healthier life.

Once the transplant team are convinced of a person's sincerity they will be accepted onto the liver transplant waiting list.

If a person is suffering from episodes of HE, then they may not be compos mentis enough to understand the severity of their situation. If a person was deemed to be suffering from HE, then this would be taken into consideration at the time of the assessment.

I would question this with the consultant on your next visit. (The transplant assesment team should review your partners case in another 6 months).

Good luck

Richard

[NICSAR17 in reply to Richard-Allen]

Hi Richard-Allen

Thank you for your reply very much appreciated .......Yes R was diagnosed with mild HE last year when hospitalised but he shredded all of his old hospital notes and discharge letters so i cant remember when it was i have read lots of info on HE and i know it can be personality changing sadly he was a Narcassist before all of this so hard to know but he is definitely getting worse and is very cruel and spiteful indeed its really taking its toll on me!!.He takes Lactulose but his medication can be hit and miss and he doesnt take the right amount of shakes which the Consultantant at QE told him its like not having Chemo for cancer !!!He was assessed for 2 days on 13/07/22 and has now had 2... 6 weekish follow ups but he is getting increasingly angry because he says he is doing all they ask of him but they wont list him and he really throws his dolly!! His Meld UK score was 59 and they did say if he was listed he would be fairly near the top of the list as his liver is very ill (their words!!) !! They had concerns about his attitude, not convinced he wont drink again and his fraility i could never imagine him being in the slightest bit grateful to the person whose liver he would receive either i dont know if the team see this too?He is sick of the drains/Hospital and just wants a transplant to stop them i am not sure what he sees the future as after transplant as its not at all easy if he didnt do as he was told he would reject !!I know right now he is really struggling with not drinking too he gave up for 10.5 months in 2018/19 and on the odd occasion for a month or so but he always knew then he could chose to have a drink at any point which he always did but now he cant !!He would never partake on here or attend AA either.... i have formed a good bond with one of the nurses on this helpline but she has no answers now ...no one knows do they !!!!Sorry such a long reply i guess will just have to see now i read that 2 years is the time for someone to live with refractory Acites it cant be any good for any of his other organs i know he is also very scared of dying but he wont talk about anything i am also the only one taking the brunt of it all they are a odd family his sister hasnt been to see him since this time last year she lives down South and i know by not seeing him she doesnt have to face up to it but happily leaves it all to me because she knows how much i cared for him !!

Kind Regards Sarah

[jazzjam in reply to NICSAR17]

Oh Sarah, I am so sorry you are having to deal with this. If he was compliant then as said in the last reply I would get his HE checked again. At the moment, sadly, from what you say it doesn’t sound that he wants a transplant to live a long and healthy life, he only wants it to carry on as he was and not have all the hassle with the hospitals and doctors. I am sure if the transplant team see this they will not put him forward.

Unfortunately as a lot of us know, only he can change, only he can grasp what he is doing to himself. You sound such a supportive partner and you are having a terrible time. Please take care of yourself, your own physical and mental health.

[NICSAR17 in reply to jazzjam]

Hi Jazzjam

Thank you for your reply its lovely to hear from others Rob is so arrogant about it all and he doesnt hide this from the transplant team so my guess is thats why they are not listing him .............He is in for his 25th drain today its a sad situation for sure !!

I try and stay strong and luckily i have some lovely friends and family however R is starting to question what i do and isnt nice about it but wherever possible i carry on !!!

Sarah x

[Diamondbabe in reply to NICSAR17]

Hi Sarah,I hope today goes as well as it can.

I hope you have a pleasant day too.

Dawn x

[NICSAR17 in reply to Diamondbabe]

Ahh Thanks Dawn you too did you get anymore answers ??

Sarah x

[Diamondbabe in reply to NICSAR17]

Not yet. Expecting a call by Thursday from the consultants secretary. The next battle will be getting him in next week for his next polyp ectomy. He will need his wheelchair. It's quite funny trying to push him around. I am not very good at that. Let's hope I don't tip him out. X

[NICSAR17 in reply to Diamondbabe]

Stephen sounds in a very bad way Rob is pretty mobile compared to him ,.......Hope you manage to get him there ....

Stay in touch

Sarah