AIH Noob

Hoping to find someone with the AIH in London as I'm finding it a very lonely illness.

Diagnosed in January this year with AIH and grade 6 cirrhosis 🙈. Recovering well on the steroids but still very weak. Just trying to learn to manage and cope with this life long invisible illness and all the strings attached. Could do with a fellow AIHer that gets the insomnia thing. Night time is so quiet.. it's hard to ignore the only sound available.. the mind! LOL!


15 Replies

  • Hi Xena, if you do Facebook there is a very active Auto Immune Hepatitis Support Group with over 1000 members who are mainly all AIH patients (plus some family members and carers like myself). Many are from the London area and regularly meet up for socials plus they are having a large London gathering at the Royal Free Hospital on the 17th of June this year with guest speakers from the medical profession. The AIH support group is very well supported by some of the very top boffins in the field of AIH and they regularly attend these big get togethers.

    It's a closed Facebook group so only you can & fellow support group members can see what you post - it won't appear on any friends pages etc.

    Well worth joining for just the support you need just now -

    All the best to you, Katie

    p.s. it's my hubby who has cirrhosis due to AIH. He has the terrible sleep pattern too. Exhausted and physically and mentally fatigued all day then goes to bed and his brain never switches off, max 3 hours sleep a night and day time naps leave him feeling worse than when he shuts his eyes.

  • Hey yeah it really ruins the quality of life this sleep thing.. I had insomnia for years just didn't know why! How long has he been diagnosed for? Does he have people to talk to at night when he can't sleep? Does it cause you both to argue? Sorry for the barrage lol it's just that I have no one to talk to. I was in that aih group but an admin upset me and I left the group. I know I should stop being stubborn and rejoin but I'd rather poop in me hands n clap! But thanks for the suggestion appreciate it.

    The gathering might be a good idea I'll pencil that in my 'busy' diary LOL!

  • This forum is great. Stick around, we have Hep A,B,C,D,E, AIH, NAFLD, alcohol related, and the bizarre cryptogenic like me. Sorry if I missed anyone out. But at the end of the day it's all liver and we all suffer the same symptoms. If you're feeling lonely this is a good site. There must be plenty on this forum who aren't sleeping, use the private messaging when you find someone who want's a chat at 3 am.

    Fortunately I'm post liver transplant and sleep like a baby now.

  • Wow you have a transplant.. even though when I spent a month in hospital I watched transplants going on all around me I still find it bizarre to hear it said so casually.. how do you find life no post transplant? Surely life must instantly be better with with more sleep! :)

  • Life is good. I got lucky and made a quick recovery. There loads of us on this forum who are post transplant. Some recover quickly and others have a difficult road to recovery. And yes the sleeping thing is much better :)

  • Ah that's good to know! Gives me more hope.. in hospital the statistics I was going by were the people around me in critical condition and having complications post transplant.. tho I have to remember of course that will be what I was surrounded by I was in a bad way myself.. liver was failing. I have grade 6 cirrhosis and have been told to be prepared for the inevitable transplant at some point in my life. Glad you're doing so well :)

  • Hubby's quality of life is rubbish, too tired mentally or physically to concentrate on anything - can't follow simple instructions or see things through to conclusion. He is on Rifaximin and Lactulose to treat this as HE symptoms. We don't & haven't shared a bedroom as he is awake so much and as I need sleep to function too and wouldn't get it with the way he is disturbed so much in the night. No, he doesn't talk to anyone in the night - he doesn't do social media as he can't get his head round it and there is no one else. We never argue and although we can't plan things in advance due to not knowing what each day will bring as regards energy levels etc. When he gets a 'good day' it's one when he hasn't had to crawl into bed during the day (for all the good that does) & we always try and make the most of those days even though he needs to recharge his batteries (or try to afterwards).

    We met in December 2009 and we reckon he had been poorly a couple of years by then, certainly looking back he can recognise that he had various symptoms which could have pointed to a poorly liver BUT his doctor signed him off sick with anxiety and depression because at the same time he was caring for his father who has alzheimers and dementia so was going through an emotionally rough spell.

    He was officially diagnosed in April 2012 following a massive upper GI bleed and emergency admission to hospital. A biopsy and ultrasound showed advanced cirrhosis and cause was deemed to be Auto-Immune Hepatitis (but and unusual presentation as his AIH isn't active and deemed to be burned out). He was listed for transplant June 2014 despite the absence of many late stage symptoms - no ascites, no jaundice, only minor HE. Varices all obliterated by banding (42 bands). He was delisted after 10 months as his blood results improved taking him out of the qualifying criteria although his physical health hasn't improved much at all - the chronic fatigue and minor HE symptoms are his main symptoms.

    I don't know what happened on the AIH facebook page but it is well worth being a member, all the Admins are also AIH patients so perhaps they were on a bad day. There are a bunch of members who do regularly meet up in London at cafes etc. for a social get together and informal support network.

    We are in Scotland and haven't met up with anyone else with AIH, I was meeting with a lady regularly who's husband was also poorly with cirrhosis but sadly he passed away at Christmas and I think she has distanced herself from all things liver related now.

    All the best, Katie xx

  • Wow sounds like he's been through a really rough time! I've been convinced I'm developing HE but the doctors think I'm fine. I was discharged from the hospital on high steroid dosage with no support and ended up getting sectioned for a few days. No one is very well equipped for the mental side of this stuff.. if I didn't have support at home who knows where i or how I could have ended up! It's a miracle you don't argue.. I find myself fixating on every small detail and being overly sensitive and sometimes full of rage. Wish I had the space to sleep in separate rooms.. that must really save you guys a lot of frustration. It's tricky to take care of both our needs when they're both so very different. Even diet wise we clash. I feel my brains always ticking and I'm so alone with it. Does your husband not mention the same? Would someone to talk to not be beneficial? The silence at night can be torturous for me. Tho I have to be quiet so not to disturb anyone. I was signed off a couple of years ago with depression and agoraphobia and for all my multiple sicknesses which only now are surfacing more as symptoms of liver disease than illnesses themselves. Looking back I've been sick for years so this diagnosis has been somewhat a relief because I was struggling to cope for a while. So if his aih is dead does that mean he can come off the meds? Whereabouts in Scotland? I have friends and family in Scotland and hope to visit at some point this year :) ps. I'm really impressed that you've taken it upon yourself to even be in this group for your husband.. and saying you make the most of his good days. Almost makes me want to cry. It's so hard for people to understand how hard it is to be happy even for 5 mins sometimes. I wish my boyfriend had someone to talk to that understands. We're struggling a lot right now :(

  • Ps I should also mention that he's an amazing guy and I'm very lucky to have him. In fact he's saved my life. Just so new to both of us

  • It can be really tough on a relationship. I ended up getting divorced, I havd two young kids and it sent me into a bit of a depression.

    Fortunately I met a great girl, fell in love before I started getting liver failure. I can honestly say that for the months before transplant the journey could have been hell. But making the best of your time together and a sense of humour is vital.

  • Awe that's unfortunate ☹️ sorry to hear that but glad you found someone to love you at your worst times. I try to have a sense of humour but I'm struggling with it.. I find myself becoming more bitter everyday. Going thru this kind of ups the stakes and I guess I'm wanting too much out of him.. more than he's capable of perhaps

  • I have ald stage 4 cirrhosis and he. Thanks for my wife of 27 years for all her support. I know she does not understand the full extent of what we go thru mentally everyday. The anxeity of the disease and depression. She knows about the insomnia but does not understand why I sleep during the day. So it is good just to look at others post and see that I am not the only one.

  • Awe well you know what? I think you're a lucky man to have a woman support your all these years even for the things she struggles to understand.. that says more than someone who does understand. 💛 I think we have to accept normal people will never understand no matter how they try.. can't teach experience and this isn't something we'd wish on them anyway! My boyfriend told me yesterday he thinks I'm getting depressed.. I think he's right. Wish I knew how to stop it. But yeah it's nice to find people going thru the same things.. just a shame we all live so far away! Love my morning walks and coffees

  • I was doing fine till shortly after christmas then I started getting depressed. dr gave me antidepressant and after about and month I feel better. I try to get exercise to walk dog about a mile in am. What gets me down is I can have a real good day and do alot of things then it takes me two days to recover. The funny thing is my wife still ask me to remember things LOL like that is gonna happen.

  • Yeah I wouldn't take the antidepressants.. they seemed to make me more depressed. I'm doing the best I can to get happy like going beauty salon or nice walks or swimming but the smallest dissapointment can have temendous affects on my will to live. It's a rollercoaster this disease ey? Where do you live ?

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