Post transplant ascites?

[b0nnie12]

Hi, it's 3 weeks today since my brother received his new liver. He has a lot of fluid in his abdomen and legs, approximately 20kgs worth, he's struggling to walk and is very sore. The docs have stopped his water tablet and said that eventually it should go away with him moving more but he's walking with crutches at the moment and is struggling to go very far. Has anyone else suffered from this post transplant and if so how long did it take to go and what treatment were they given if any for it. He had his first check up next week. Thanks in advance for any advice, I feel really helpless as there's not much I can do other than try to help him move more and try to keep his spirits up.

[alfredthegreat]

Hi bOnnie, I was quite lucky because mine went quite quickly after transplant. I suppose the more fluid that he was carrying pre transplant the longer it will take to go, I've seen a few people on the forum posting that they were still suffering with fluid post transplant. Also the new liver takes a while to be working to it's full potential. Has he been in touch with the transplant coordinator to inform them of this? If you are worried it's worth a phone call, they can either reassure you or take some action if need be. Wishing you and your brother all the best, Alf

[Hidden in reply to alfredthegreat]

I was about to suggest to Bonnie to seek your advice Alfred but you beat me to the post!

[Divg]

My partner had a horrible time with this. He lost an almost impossible amount of blood during his transplant (22litres/38 pints) and his blood pressure was non existent. As a result they had to pump him so full of fluid that they couldn't close him post surgery. He was open on ICU 5 days.

The swelling did go down as he started moving more, but it did take a few weeks. He was so full of fluid that his skin started splitting. I remember when he moved to HDU (but before he could walk) looking at me very seriously and saying "my penis is ginormous! Like a pringles can!". It was as well. Back to normal now.

If you're concerned call the coordinators and they can maybe arrange to see him before your appointment. This stage (when they're out of hospital but not quite better yet) is so difficult.

[dizzime]

Hi, I was enormous after my transplant, so much fluid everywhere. Even had massive water blisters in my toes and had to have bandages round my arms where they had tried to take blood from me and when they took them off my arms used to be like a fountain. Quite funny now i look back. When I got sent home had to sleep downstairs as could not walk up more than 4 steps as my legs just wouldn't hold me Gotl told to to exercise and have a lot if protein as this helps. It did all go eventually say 2/3 months (cant remember exactly) and then I found that I was very thin under all the water retention. I am 5ft 5 and weighed in at 7st 10 so quite underweight. It did all return to normal though. It does all take time and your brother will recover. I am just over 5 years post transplant now and doing well. Good luck with everything. X 😊😊

[AyrshireK]

Do the transplant team know he is this bad with it? I would have thought they would get him back in before clinic date if they knew. Might be worth ringing t/p coordinators or direct to ward.