I'm hoping to hear stories or advice regarding non-cirrhotic portal hypertension. My dad is currently in our local hospital's HDU recovering from a huge variceal bleed caused by non-cirrhotic portal hypertension that landed him in intensive care for 5 weeks. Prior to this, he had been in and out of hospital for about a month because he kept having variceal bleeds that meant a visit to A+E, investigation via an endoscopy/gastroscopy, and then a banding procedure...however, unfortunately this process didn't really work, which led to the huge bleed. We are very lucky that he's still with us. He is now doing much better and recovering - however, the root of the problem (the portal hypertension) still has not been 'fixed' and his consultant keeps telling us that it is a very rare case because his liver is absolutely fine (which we expected) and the banding procedure normally works on 95% of people with non-cirrhotic portal hypertension. I was wondering if anyone here has any similar stories, or has a similar condition? And if so, did you have a procedure or plan apart from banding/'gluing' the varices, and medication to prevent it?
Dad's consultant wants to refer him to a liver and gastro specialist in another hospital, which we are all very keen to have happen. The worst part is the waiting in between that - dad is still in hospital and hasn't had a bleed in 5 weeks, but his bleeds are so unpredictable and the waiting is really awful, especially as they want to move him to a normal ward where his blood pressure/hemoglobin will be monitored less. Basically I just want to hear stories of living with this condition, and results/procedures that have worked for you. Please let me know if any of this doesn't make sense! My brain is a bit all over the place at the moment. Thanks in advance