British Liver Trust
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Sister has recently been told she has autoimmune hepatitis

My older sister(41)was told in October that she had autoimmune hepatitis since then say has been really ill, lungs collapsed twice because of the fluid that can’t go to her liver so goes else where. Since October she has been at home for a week but has now been put on the liver transplant list.

I joined this group mainly to get support for me as I’m not handling it too well and how I can support my sister, her partner and her two young children.

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Welcome aboard gaffa, hope we can be of support.

My hubby also had a late diagnosis of auto-immune hepatitis (April 2012) and like your sister had already got to the stage of cirrhosis before it was identified. In his case he presented by having a massive upper GI bleed and was hospitalised. In many people AIH is picked up soon enough for treatment to begin with steroids and immune suppressants but for the odd few it has been attacking the liver quietly in the background and doesn't get identified until it is causing major problems.

It sounds like your sister has ascites which is a sign her liver is struggling or decompensated at present. She will most likely need a drain and will probably get some relief after that. It is a good thing that she has been put on the transplant list so quickly and fingers crossed she will get a liver very soon and hopefully begin her recovery.

Whilst she is waiting she will probably have to attend transplant clinic every few weeks to be monitored and through this t/p co-ordinators work out who is of the highest need in each blood group. She will need to follow a low salt diet to try to prevent further ascites build ups and perhaps be put on various medications which have their own side effects.

My hubby was listed in June 2014 but his condition actually stabilised enough for him to be delisted 10 months later and we are back at the monitoring stage.

It's a good thing that this has been caught and that she has been listed.

If you have specific questions then ask away, you'll always find someone here who has either been where your sister is now or like myself supporting a loved one with the condition.

Katie x

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Wow that's quick from diagnosis to going on transplant list.. but good news (even though it won't seem that way to you). Is it mainly fluid build up she suffering with or does she have other complications of liver disease such as tiredness, no appetite, losing weight/muscle, bowel problems ?

Hopefully she would of been informed to cut salt out of her diet completely and no pre prepared meals that means tinned goods , sauces and microwave meals

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Hi Gaffa,

Hope we can help. Katie and JoJo offer great advice and have oodles of knowledge and experience.

One thing that's for sure is your sister will need support, and its good for those giving that support to have an understanding of what is going on and what may be involved as things progress. The primary source of that advice will clearly be her primary care team, usually via the transplant coordinators, but if there is anything else you'd like to understand just ask. After all, those giving support also need support.

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As someone who has AIH, my advice would be to listen to you what your sister has to say and talk things through with her if that is what she wants. I find that very often I tell people how things are going for me, only for them to totally ignore whatever I have said and act as if I have just told them I got another earache! This includes family.

Talking about it, rather than pretending it will just go away will really help. Ask her how she feels and really listen. Be sympathetic and maybe bring her magazines to read/ candles to relax her/ whatever it is that she likes. Just a few flowers will show you are thinking of her.

As for yourself, be reassured that the team looking after will do the best they can to improve her condition.

Just remember, just as much as it is a shock for you, it has been a huge shock for your sister, so whilst you have your own very difficult emotions to deal with, discussing these with your sister probably won't help. I say this from my own point of view of being on the receiving end of these type of reactions. For your own emotional difficulties, I would advise talking to a good friend in order that when you are with your sister, you can listen to her.

Remember that this is my own view point, others may see things differently. All the very best to you and your sister. :)

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Hello Gaffa,

I'm sorry to hear about your sister. My expertise is in primary liver cancer, but for anyone with a serious diagnosis, I always recommend seeking a second opinion. Also, if your sister's condition becomes worse, see if she is eligible for a live-donor liver transplant and see if you are a match. But begin with a second opinion from an expert, someone who deals with autoimmune hepatitis daily.

Wish I could be of more help. Take care.

~Andrea

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