Hello everyone. I have received the results from biopsy and I hope that you can help me with some more understanding..
1)near in active cirrhosis - could be active or inactive? Or is wrong written?
2)without specific clues to the aetiology this could be either burnt-out autoimmune hepatitis or non alcoholic steatohepatitis. I found some information online and looks like they are two very different diagnoses. Does anyone have the same diagnostic? Some treatment available?
3)She is currently asymptomatic,therefore we will continue to monitor this. So, I must vomiting blood or develop cancer or I don't know what other horrible things to get more attention from my consultant?
I have received a follow-up appointment at the end of November. It is ok?It is not to late?
Thank you.
Written by
monikoki
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My hubbies diagnosis is auto-immune cirrhosis due to burned out AIH. He has no active inflammation (or hasn't had on last biopsy - May 2014). Blood tests are currently showing everything in range with no active inflammation though on first presentation at hospital he had 'deranged LFT's' was jaundiced and bleeding from varices. He had clubbing of the fingers and spider naevi.
I can go down the list of things on the BLT list of symptoms and tick several of them off. Though fortunately he doesn't have any of the major life threatening ones currently.
He is prescribed 5mg of prednisolone daily as a maintainance dose to keep any inflammation at bay & that's the only medication for the actual liver damage side of things. He takes Omeprazole to protect his stomach lining (diagnosis of portal hypertensive gastropathy), Adcal D3 to counteract the calcium stripping properties from pred, Lactulose and Rifaximin to deal with toxins and mild HE symptoms and Penicillin V as he lost his spleen due to an embolisation operation on aneurysms in his splenic artery.
Hubby was listed for transplant for a period but delisted when his condition stabilised, he's far from 100% fit at all but is back at the monitoring stage. There is nothing they can do to actually treat cirrhosis, once cirrhosis is confirmed then it is just a case of dealing with any symptoms as, when or if they arise and making sure you have regular scans, bloods and consultations. As you are asymptomatic then a November appointment isn't that far away. We generally see hubbies consultants every 6 months - a massive gap compared to the every 5 weeks we were when he was on t/p list.
I suppose we could start a glossary thread but it will eventually get lost going down the posts. We are supposed to explain a term in full before using acronyms but sometimes it gets forgotten especially if something was mentioned elsewhere in the thread then we often continue the acronym use.
Sometimes it's good though to do the research when someone mentions something and it's certainly what i've done down the years.
I guess the ones i've used in my reply above are:-
I've started a glossary thread and btw (by the way ) don't be afraid to ask if something pops up that you don't know. Every day is a school day and we were all new to it one time. Feel free to ask on any thread if something is new and you want to know more.
Us old timers do sometimes forget and slip into acronym use too easily, we need a boot up the bum every now and then to remind us not to.
The British Liver Trust main website is a gold mine of information so don't forget it is there it covers everything liver related. britishlivertrust.org.uk/
I've just called it Glossary of Acronyms - AKA (Also Known As) What does that stand for? If it isn't at the top of your page you can type Glossary into the Search British Liver Trust box and that should bring it up. Of indeed here's the link direct to the thread - healthunlocked.com/britishl...
One thing I would suggest is to educate yourself about the symptoms of cirrhosis which might be an indicator of any signs of deterioration and in that way you can do your own monitoring in between consultations. This is what i've done for hubby, we monitor his weight and he makes me aware of if he is feeling anything and then I can notify doctors if required. The British Liver Trust page on cirrhosis is ideal for this purpose :- britishlivertrust.org.uk/li...
When we go to appointments we make notes beforehand. We list all current meds because they always ask for that, any symptoms which have presented and also any questions we want to ask. At appointments we make a note of hubbies weight as measured at hospital together with any answers we get or any information from doctors and this lets us keep our own record.
You arn't at deaths door if you are asymptomatic and of course if any symptoms do arise you should have contact details to get attention from doctors - even if its a phone number for consultants secretary so you can run things past doctor.
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) don't be afraid to ask if something pops up that you don't know. Every day is a school day and we were all new to it one time. Feel free to ask on any thread if something is new and you want to know more.
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