Long story but about to have transplant assessment but really suffering with ascities, odeama and looking for advice re drains

[Elvishaslefttheroom]

Hi,

My husband is going in for a liver transplant assessment next week. He has been very ill with cirrhosis for many years but the past 3 years he has been admitted to hospital with Hepatic Encephalopathy on several occasions and has been continuously jaundiced for over a year now, his quality of life is very poor.

He was also diagnosed with Diabetes in August 2021 which has been very difficult to control and following recent illness his treatment has been changed again and his BS is very high.

Each time he has been in to hospital it has started with swelling of his scrotum and testicles and then confusion. He was retaining fluid in his stomach but they have never successfully drained anything.

In November he became very unwell and was in a lot of pain. His scrotum had swollen again and he was not passing water. He was also diagnosed with Covid 19 and this then became the priority.

He was discharged 2 weeks later despite telling them he thought he had a UTI, his water was very brown and was burning and the fact his scrotum/testicles where still swollen. Needless to say his condition deteriorated further when he got home.

I test his urine daily for keytones due to the episodes of HE but it was clear to me he had an infection of some sort. He was put on Amoxycillin twice, then treated for a fungal infection, candida and put on a course of Nitrofurantoin and Fluconazole. The infection got worse, blood in his urine and very painful and he was put on Pivmecillinim before finally getting advised he had a bacterial infection and was started on Cefalexin almost a week ago.

All through this time his swelling has got worse, his stomach is very bloated, his normally thin legs are like tree trunks and he can hardly bend them, his ankles are huge and his testicles are still very swollen and painful. He has put on 10 kilos since 9 November.

He has lost all confidence in our local hospital and with the current crisis in A&E and his previous horrendous experiences he refuses to go back into A&E and wait for 12 hours in a corridor and prefers to wait for his assessment at Birmingham.

I have asked his specialist nurse if he can go directly into ACU to be drained only to be told he is not know to them, despite having been in hospital and treated by them at least 9 times in the last 18 months.

So, apologies for the lengthy post but my question is does anyone have any similar experiences and is this, sadly, normal? Does anyone have any advice to help me make him more comfortable?

Any suggestions would be much appreciated as I am terrified this may prevent him from even getting to the assessment at Birmingham.

Many thanks

[lonmallin50]

Sorry to hear your story your husband has gone through a lot l got de compensated liver been treated very well see the top liver dr every 4 to 5 weeks I'm at Warwick hospital, l got my assessment in 2 weeks at QE hospital for transplant l have heard they are great at what they do at the liver unit so hopefully your husband will get the care he needs there just hang on in there pretty sure he will get the proper treatment straight away good luck

[Dogbot]

Hi as Ionmallin said sorry to hear about your husband, but you really must ask questions when he goes in for scans and see the doctors . It’s not an easy thing to drain fluid there is a lot of considerations to take into account before they stick a drain into your husband. I’m suffering with ascites and my scrotum and testies have swollen so my doctor put my diuretics up and it’s slowly working. Good luck to you all I hope it gets better soon. 👍

Stay safe All

Dogbot 🌈🐶

[Yellowsydney]

I wouldn't have thought it would prevent an assessment, I fact I should think they will treat him whilst there.Hope he gets the care he needs, if you use Facebook please feel free to join our friendly and knowledgeable group called liver transplant support uk, hundreds of people who've been in your situation.

Hilary