Introducing my self:)))Autoimune hepatitis+cirrhosis

[Indre123]

Hi,i am Indre,36 years old,mother of 3 wonderful boys❤️.I have been diagnosed with autoimune hepatitis+Chirrosis in 2005.Had one relapse in 2007 after my first son was born.In 2018 December will be 13 years i am living with this nasty disease.It was always well controled,responding to meds.But just a 1,5month ago on my 3 yearly Endoscopy they discovered varices,put 4 bands,and prescribed beta blockers.the varices was grade 2 and 3.after a month they did another endoscopy,and found 2 varices grade 2:(So in a month coming back again to see whats going on:(I am very upset and crying,as i was in such a briliant health,was going to gym,eating healthy.Now everything changed dramaticaly,and i am even to scared to ask my doctor whats going to be next:(My boys are nearly 11yo ,6yo,and 4yo ,life its so unfear:(Maybe i am overeacting,but these varices just knocked me out of track:(Also i have moderate anemia,wich was discovered few weeks ago,so on the iron tablets and folic acid.Overal i am still feeling not very bad,maybe just a bit tired from lack of iron and all this bad news.My next appoitment at Kings is end of July.I want to ask lots of questions in there,but i dont know if i will b brave enough.I got the feeling that complications just started,and they not going to leave me alone:(And i just dont have time to be ill,i want to be busy as i was with my kids❤️So thats my story:)Sorry fo a long post and my spelling:)Have a nice day everyone❤️❤️❤️

[Hidden]

Hi Indre,

Welcome to the forum.

We hope you will find it a friendly place to visit, our members are amazing and will offer you lots of support.

You may find our publications on Autoimmune Hepatitis and also Cirrhosis of the liver useful to read prior to your specialist appointment. Here are the links;

britishlivertrust.org.uk/wp...

britishlivertrust.org.uk/wp...

Hopefully with the forum's support and our information, it will help you find the courage to ask the questions you need to your consultant.

You're not alone, keep positive.

Warm wishes

Trust1

[Indre123 in reply to Hidden]

Thank you for the links

[Danisleigh]

It’s awful when after being stable

For so long you get bad news. My son has alagille syndrome and we were living life to the full then this year he was diagnosed with liver cancer and within weeks he had a transplant. I felt like you, it wasn’t fair, he is only 16 and we had so much going on and suddenly our world was turned upside down. Things are good now though and we are back to normal, all be it a new kind of normal! Hopefully this is a little blip but always best to ask questions and be armed with as much knowledge as possible x

[Indre123 in reply to Danisleigh]

Oh its horible then kids are ill,its much worse i believe ,then to be ill yourself.I am glad he had his transplant and all is good now.I wish him lots of health❤️❤️❤️I am scared to ask the questions,because usualy i am overthinking,and waiting for the worst.I know i shouldn’t,but its just me.I am

with the same doctor now about 8 years,he knows me well,so i might be brave xxx

[janine541]

Hi Indre

Whilst you have 3 young boys i believe is better to deal with what you know. At least if you ask the questions you will know.

Also sometimes the side affect are worse that the disease. Perhaps you are having side affects but the disease has stayed the same.

Hoping you get a good out come

Take care and best wishes

[Indre123 in reply to janine541]

I just read that you can actualy die from varices bleeding,so now i am dreading even to read more🤦🏼‍♀️But fingers crosed treatment of this complication will be successful.I am just dont know what to expect,can they stop it for ling term ,or it will keep coming back.I remember long time ago he told me that i am in a very good shape as long as i dont have varices🤷🏼‍♀️I didnt realise they are so dangerous:(And i never ever talk to anyone about my illnes,so feels good finaly i let it out.Thank you for reply

[Smyally in reply to Indre123]

I know it’s scary when you are told you have varacies, but on the brighter side they have found your varacies before they have bleed and have banded them. There lots of people on here who have had their varacies banded for years and been ok. Your doctors will now be aware that you develop them you will have regular camera checks. If you get any bleeding by being sick (blood from stomach can sometimes look black) or from your back passage, or if like myself down below years after having a hysterectomy then you must go to a&e so it can be sorted out. Yes having a bleed is scary I’ve had several now though and I’m still here to tell the tale. Until then live your life. No one knows what tomorrow will bring not even fit and well people x

[Indre123 in reply to Smyally]

Thank you for your answer.I am lucky(am i ?) they found it before bleeding.But its still no guarantee that its not going to happen?Is the varices means that i might need a transplant in the future?I know life its so fragile,nobody knows what tomorow will bring,i am just worried for my kids,and don’t want them to see me suffer.But fingers crosed i will be ok for longer:)xxx

[Freyaviking]

Hi Indre , I have AIH just started this journey last November, all my bloods back to normal now. I understand your worrys, I have 1 kids 13 and 17 and when diagnosed all sorts of horrible thoughts went through my head, even now! I thought I might have liver cancer as I have had an aunt and uncle ( brother and sister) die from that, so it's always in the back of my mind, especially with side effects of Aza.

Are you on the AIH Facebook page, I think there's also one for people who have varisces, you maybe able to find more info on there. Good luck with everything xx