It would be good to hear from anyone else who is living with this condition. My partner was diagnosed after a massive bleed at home from oesophageal varices (that he was unaware he had!) 5 years ago. On admission to the emergency dept. of hospital, the blood loss and trauma to his body was so great that after several days in intensive care followed by a week in H.D.U. and finally on the general ward, the Consultant came and sat with us and told us that they hadn't expected him to survive. He also apologised to me as when he and another doctor had questioned me about his drinking habits and I had said that "he doesn't drink and never has because he's one of a few people who doesn't like alcohol!", they had dismissed this information as he had presented to the medical world with burst varices and they had made the assumption that it was alcohol related. During this chat at his bedside, he also confirmed that after extensive tests and observation, they realised what a (previously) healthy and fit man he was and that it was, indeed, this fitness level that had contributed greatly to his survival. So, skip forward a while and they've carried out tests for every non-alcoholic liver disease imaginable (P.B.C, Wilson's disease etc). Eventually, a biopsy was sent off to a Professor at Newcastle from the liver unit at Glasgow and he was given a diagnosis of Nodular Regenerative Hyperplasia of Liver. I suppose it could be said that he's fairly lucky to have this diagnosis as its normally diagnosed at post-mortem! So, here we are 5 years down the line, he still has banding under sedation every 6 months (the usual life-long procedure), EXTREME fatigue, portal hypertension, splenomegaly, awful oedema of legs and scrotum (thankfully this comes and goes as its painful and uncomfortable), leg cramps and awful itchiness over his body. He takes carvedilol, spirolactone, furosemide, atarax and questran. He's also advised to follow a very low-salt diet and drink lots of tonic (for the cramps). I don't know why I've put this in the "Question" section, it's more of a blog; apologies. I think I really am just wondering after all these years if there is anyone out there with the same?
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.