Hospital again

[lonmallin50]

Just got on transplant list 3 weeks which was a relief but my belly and legs angles have all swelled up last few weeks emailed gastro nurse she said she would have me in within a week went to gp same day she took a quick look sent to a and e same day straight on a ward till now been in 8 days now my kidneys not working right now so on antibiotics the service I get is so good has been for the last 2 years I here. People stories they can not get seen and left in limbo a lot are terrible ARLD disease is a horrible way of life and all stress of not know what is going on with Doctors more pressure can not be good the only thing l could put it down two is where we live in the country more should be done when treating this horrible life threating disease Lon

[E8mmo]

Hiya, great to read you have been listed. My husband is going through the same - huge abdominal swelling due to fluid and ankles have been so bad it looked like this skin around his ankles was going to burst. Husband living with reoccurring PSC in transplanted liver. He will be listed but just not at the moment. He has portal hypertension and is having plasmapheresis to try and help other his symptoms.

I had worried about his kidney function. I’m going to pick this up and ask his team. Was there anything else symptom wise you have noticed?? Thank you and keep positive. The call will come xx

[Yellowsydney]

Once you're on the transplant list you should contact your transplant coordinators, they are brilliant and need to know what is happening.Good luck

Hilary