Hi, I was diagnosed with AIH when I was 19, shortly after having my daughter who is now 7. I have taken all the medication everyday and i am still getting worse. I was referred to Birmingham to see the specialist and its feared that I will need a transplant sooner rather than later. I am really worried about everything and being away from my daughter. She knows mummy is poorly but that's all she can understand. I'm worried about the assessment and how soon the transplant would be after. I am only 25, and so scared. My friends and family are around me but I don't think they quite understand how I feel. I've been feeling more and more ill and its affecting me at work now. I'm just fed up now. In trying my best to cope, but it's hard.
Jade x
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Jadiejade
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Hello Jade, sorry you find yourself in this situation.
You have an AIH diagnosis but has it progressed as far as cirrhosis yet? You say a transplant may be needed in the future but are you at actually at that stage? Have you seen the specialists at Birmingham and have you been put forward for a transplant assessment?
Sorry to ask so many questions it is just that hubby and I have been through the assessment procedure and I have put a very thorough description of the process (albeit the Edinburgh version) on here a year and a bit back. So that may be of interest to you with regards to the types of things that happen at assessment.
My hubby has cirrhosis due to AIH although his AIH diagnosis came after he presented at hospital with symptoms of decompensated cirrhosis - massive upper GI bleed, deranged LFT's, Portal Hypertension with varices and portal hypertensive gastritis. Before that no one had a clue he had a liver illness.
He was listed for transplant July 2013 but removed from the list 10 months later after an improvement in blood test results meant that although he remains poorly he doesn't currently fit the mathematical equation which decides who is listed and who isn't. They've deemed that he is currently stable and the risks of transplant outweigh the potential benefits. Transplant is not a guaranteed golden ticket to a happy ever after (if you've been following some of the other posts on here).
If you do get listed then you have got to be aware that it could be a long wait, hate to say it but due to the shortage of donor organs those in the most immediate danger of dying due to their liver condition will always be the top of the list. Who is actually chosen to receive a liver when one comes available is dependent on (a) blood group match (b) body size match (c) who is in most immediate need. There are also differences in the types of organ which a recipient is suitable to receive - my hubby was suitable for a cardiac deceased donor liver, a brain deceased donor liver, a split liver and even a live donor organ.
There are folks posting on here who waited only hours after their assessment and there are those who waited 2 years + and had many false calls before a suitable liver could be transplanted. No one can say at any given time when that call will come and waiting is a bit stressful though when hubby was on the list we tried to carry on as normal but made sure we always had our phones charged etc. etc.
You'll find that during your assessment you will meet loads of professionals who will very thoroughly go through the ins and outs of what transplant involves, being on the list etc. etc. Hubby saw a psychiatrist so there is someone to speak to and also there will be a social worker on the team who can help with support issues to do with your daughter and home situation and so on - so you will get help with these things ......................... you are not alone.
Don't know whether any of that has helped or not, hope it has a bit. As I say you are not alone in this situation. If you need any further help keep posting and I am sure you will get lots of other friendly advice and help.
Thank you so much for your reply and so sorry to hear what you and your poor husband have had to go through.
I do have advanced cirrhosis, as well as osaphageal varices, Autoimmune hemolytic anemia, now thinning bones and anaemia. I seem to be going further down hill of late. I have not had an assessment yet, but they have said it seems more likely. They don't want to do anything any sooner than they have to because I am still so young.
My blood results seem to have declined recently and have my protein levels which they were the most worried about are lower than ever.
I know I will probably be waiting a very long time, but I'm just worried they will leave it too long to at the very least be assessed. It is good to know that there will be plenty of people to talk to about it all and people who understand.
Hi Jade, I mentioned other posts in my first response to you then realised we were currently on the Liver4Life page rather than the British Liver Trust one which is where all my previous posts are rather than here.
There is also a fabulous online (and increasingly physical) support group for AIH, they all met in Birmingham recently but have a brilliant group on Facebook and also a forum. They get a lot of advice from Dr Gideon Hirschfield at Birmingham who seems to be the UK leading light on AIH.
Links to those groups are at:- supportaih.websitetoolbox.com/ and facebook.com/groups/AIHorgUK/ (The facebook group is very active and has members all round world as well as UK, most are patients or carers like myself - closed group so no one other than the group sees the posts).
There are post transplant patients on there who could share their experiences too.
Thank you so much for this, I will definitely take a look at these.
I have been seeing Dr Hirschfield and Professor Adams and all the nursing staff who have been incredibly supportive so far.
Talking to other people who understand it all will be a big help. My friends try their best but they don't seem to understand the reality of it all because I don't look it act ill all the time.
Hi Jade, Nothing really to add to all the fab info Katie has passed on, but just to say I'm one of the AIH Facebook members and went to our September meeting at Birmingham. Being under the care of Dr H and his team at Birmingham you can be reassured you are in THE best hands at one of the best transplant centres, and scary though it is they will look after you. There are probably no quick fixes ahead, but keep the faith in your team and I'm sure they are doing their best for you.
my story is very similar to yours I was diagnosed at 20 and im now 22 and needing a transplant the fear of the unknown is overwhelming people can tell you they are there to support you but they cant truly understand that every day is a struggle and a fight and you want to protect them from that. if you even want to talk just give me a message its nice to see someone the same kind of age going through it too
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