NRH

[ImAliverNotaFighter]

I have recently been diagnosed with NRH. It was explained to me what it was by the consultant at the time. However so much information being thrown at you and being told you have a 'condition' you dont tend to take in a lot. Having looked online and there being limited information on the condition, im still unclear about how this condition has came about, how it will affect my day to day life and any future complications I may have. I am a 30 year old male, with normally a good bill of health, not a big drinker and never taken drugs. Is anyone else in the same boat and could help me understand this a bit better?

[ThreeSmiles]

Hi aliver

Welcome to this normally vocal forum! It may be quiet for you now due to not knowing what NRH is. I have never heard of it so maybe others haven’t either. Could you perhaps describe what it is and the symptoms you have? Others may then be able to draw parallels, perhaps? Thanks!

Miles

[Hidden]

Hi and welcome to our forum,

Are you referring to Nodular Regenerative Hyperplasia? If so, you will be aware it is quite a rare liver condition and unfortunately, we do not have specific information about it in our Liver Trust publications.

Are you under the care of a liver specialist? If you are in the UK you may be interested in our list of UK liver units so you can see which is nearest to you;

britishlivertrust.org.uk/li...

It really is important that your own specialist takes time to sit with you and answers your questions. Can you consider requesting another appointment so you could discuss matters and maybe take a friend or family member with you to write everything down?

We hope you find the forum a supportive place to visit

Best wishes

Trust1

[raqs67]

Hi, I was not diagnosed with NRH but it was found incidentally after my liver transplant for Primary biliary cholangitis. Apparently it is quite uncommon but I think it can cause raised portal hypertension which can lead to oesophageal varices etc. You should try and get further information. How did they diagnose it for you.

[Bootandall]

Hi, welcome to the group!

I am very interested in learning more about NRH, l think my grandmother may have had it. Her portal hypertension was never explained. She did not have Hep C, not a drinker or a smoker, didn't use drugs.

I can relate to your initial shock at hearing your diagnosis. I think we've all had that out-of- body feeling when you can't really process what you're being told. I have cirrhosis caused by Hep C, and it took several appointments before I could even begin to wrap my head around it.

[Hidden]

Some info which you might already have seen: en.m.wikipedia.org/wiki/Nod...

It appears the first step is to try to find out which of the many candidates is causing it.

[INRH]

I was diagnosed with NRH in May, I was throwing up blood and they went through blood work, endoscopes and also putting plugs on my bleeding varices. Nothing worked so finally went through a TIPS procedure which worked, six months and counting, so far so good. Both my liver specialist and GI confirmed that NRH is not caused by alcohol, if it was alcohol related there would be cirrhosis present on the liver. NRH caused my portal hypertension which was eventually resolved by TIPS. I did have discolored stools and felt itchy all over, also had lost my appetite but my liver enzymes were normal and still are ..

Hope this helps