Recent diagnosis

[fursey7]

I am 22 years old and have recently diagnosed with autoimmune hepatitis complicated by Cirossis and there was also an 8mm lesion, I'm awaiting a liver biopsy to comfirm It! I feel lost as to what it all means, I've tried asking my specialists but have been kind of left in the dark! Any advice on potential things to happen I.e side effects of the conditions or things to take note of would be extremely helpful.

[AyrshireK]

If you do Facebook fursey7 there is an amazing AIH Support Group on there with over 1300 members most of whom are either people with AIH or like me are supporting loved ones with the condition. It's a private group so none of your other friends need know about what you are posting and you will always find great support and advice (and a place to vent) there. It is run by fellow AIH patients and the group is supported by many of the top boffins working with Auto Immune Hepatitis in the UK. There are some get togethers each year at which some of these specialists speak.

The page is at:- facebook.com/groups/AIHorgUK/

My hubby also has cirrhosis caused by AIH, his diagnosis came after he started to show late stage cirrhosis symptoms and he never knew he had anything wrong until then.

There are other members of the AIH page who like you are young and have managed this condition for years - some have gone on to require transplant owing to the advanced stage of damage to their livers. In others the condition is caught prior to it causing cirrhosis and is gotten under control by steroid and immune suppressant regimes.

Wishing you all the best and hoping that doctors give you some answers and feedback very quickly as to where they think treatment needs to go from hereon.

Katie xx

[fursey7 in reply to AyrshireK]

Thank you for the reply, it's appreciated a lot

Ryan

[AyrshireK in reply to fursey7]

If you have been left totally in the dark with just the AIH diagnosis and little information you might also (if you haven't already seen it) want to have a look at the British Liver Trust page on Auto-Immune Hepatitis and the downloadable leaflet it also produces.

britishlivertrust.org.uk/li...

Any specific questions then fire away, there are a lot of AIH folks on here but more so on the Facebook page.

All the best, Katie x

[JulesMP in reply to AyrshireK]

Katie - sorry to hear of your husband's condition and that of the originator of thr post. I have also got AIH taken 9 months to investigste & confirm but not advanced yet. The link you have given to facebook is so helpful I have been looking for a support network and have just applied to join, thank you and all the best to all of you!

[19581979]

I have a different liver condition but I have seen Katie's posts on other links. She makes a lot of sense.

Before you go to see the g.p. or specialist try to write down the questions you have. Also ask if you can contact them if you have any questions once the information has sunk in. Also check how you can do this.

Take someone with you who you really trust when you go to see the professionals. They can hear the information you may miss. I take my husband. He supports me with listening to private information, picking up on things I miss, and my emotional needs. I've still got to learn to ask more about the individual readings.

Best of luck

Gx

[Hidden]

As Katie has already said, the Facebook group is worth joining- I am a member and can vouch for the usefulness of the meetings and the replies you get from posting. Even if you cannot make the meetings, there are notes from the previous meetings (on the Facebook page) which will make more sense than Google!! Initially, it is a shock to receive such a diagnosis, but in time as you get used to what is normal for you, you will learn to adjust as the medication hopefully brings things under control.

The biggest side effect to get used to will be the fatigue. If they put you on steroids, there will be some side effects from those, but I have been on them 3 times in 9 years and each time they have affected me differently, so this just emphasises how unique the response is for each individual. Try to remain calm and think of it as a managed disease rather than anything else.

One thing you will need to get used to is the fact that AIH is classed as a rare illness, so it is unlikely that many health professionals will have heard of it, which means they can be prone to latching onto the word hepatitis and making assumptions related to that. Many people with AIH choose to say they have liver disease.

As Katie said, just ask if you want to know anything specific. You will get regular bloods done and the key numbers to keep an eye on will be the ALT and IgG levels. I wish you a very positive journey and hope you are doing as well as can be expected

[fursey7]

Thank you so much for the reply, sorry I've taken so long to return a message, everything everyone is saying is helping a huge amount! Cannot begin to describe how thankful I am to everyone who's replied