My husband spent 6 weeks in hospital due to Liver disease and cirrhosis, it was unknown what condition he had. So he was transferred to Leeds St James Hospital and they found he had Budd-Chiari Syndrome. A disorder affecting the liver and blood vessels, where blood flowing into the liver has difficultly in being able to flow out, leading to serious complications.
Whilst he was in Leeds he had a TIPS procedure, and has said he feels slightly better than he did before the procedure. However I think he feels that once he had the procedure that would solve all his problems.
He's been out of hospital for a few days now and I think he's struggling to cope with his condition. Appointments have been flying through the letter box for a endoscopy, to go back to Leeds at beginning of April, scans etc. He's been getting upset saying he's not going to the endoscopy. Which I've told he needs to go cos the last time he was vomiting blood and four varies had burst. Think he's only just getting his head round the fact that he has to go warfin clinic each week to be monitored on warfin. I've tried telling him that once he's on a even level and everything is stable he wont have to go to as many appointments probably every 6 months or so, I don't know myself because it all depends how well his liver can function.
The doctors have said that he'll be able to get his life back but it will take time and patience to get better.
He's got acities at the moment and keeps getting bigger everyday so think he may need another drain and then hopefully that may make him feel better.
All I'm asking is has anyone else been diagnosed with this Syndrome? or something similar?
How do you cope with Liver disease or if your supporting someone how do you help them keep positive about things? Sorry, all new to this and its distressing and upsetting seeing him like this. I'm trying my best to support him, I cant keep saying to him I know how your feeling, because lets be honest I don't. I don't know what pain he can feel, I don't how uncomfortable he is.