How well do you feel your condition ha... - British Liver Trust
How well do you feel your condition has been managed over the last year?
The medical profession do not always know the answers, which is frustrating to a sufferer, so we need more research into what causes certain liver conditions.
Not clear whether this Poll still current/relevant etc. However the condition I have is AIH with fibrosis bordering on cirrhosis.
While I have no doubt that the doctors / consultants I see from time to time at my local NHS hospital are knowledgable and can tell me much about the condition it has been my personal experience that it has not been as well managed as I would have expected and occasionally the experience has been extremely frustrating. On going blood tests, scans and finding the right theraputic balance between the types of medications seem to be essential aspects in on going management / treatment but the systems seem to fall down badly on that count mainly as a consequence of what appear to be back office support system type delays.
Following a consultation it is sometimes takes a period of four to six weeks before a typed letter setting out a proposed course of treatment is received and there is rarely a matching up of what was proposed with the then current position. To me it appears to be a continuous situation of trying to play catch up while either taking too liitle or too much medication or worse still having a flare up of the condition in the meantime..
Anyhow thats a brief outline of my own feelings on the management of the condition.
I think it has been reasonably well managed but need information and support which is not there.
I have had NASH diagnosed nearly 16 years ago. Have had deranged LFTs ever since but no scans done in all that time. Feel badly let down. Doctors don’t talk to me about the problem, nor do they seem particularly bothered. The liver Consultant discharged me years ago. Only my Diabetic Consultant does regular LFTs which I’m told are always high but give me no figures to work with except GGTs which are always between 1000 and 2000. They treat me like I’m an imbecile yet I have a Ph.D. it’s no wonder people look to Google or this site for answers.
Supposed to have regular blood tests done to monitor my NAFLD. Understand the issues at present but still need the reassurence of a BT. More chance of getting blood out of a stone at present. Changed meds for hypertension this year, supposed to be monitored because they are known to cause issues. Fat chance of that. Wish I could afford to go private for this. 😔
