Antibody mediated rejection - British Liver Trust

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Antibody mediated rejection

littleleah86 profile image
29 Replies

Hello this is my first time posting. Has anyone heard of a type of rejection called antibody mediated rejection? I rejected my first liver transplant 6 weeks after transplant and had a second transplant 9 months later, my second transplant worked really well for almost a year then I began rejecting every 2-3 months. This was treated with pulsed steroids and antibiotics and I was all ok. 3 months ago I rejected and they found my antibodies and my donor antibodies fighting each other and damaging my liver. I am now back in King’s college hospital London with what I and my team believed to be a serious bout of rejection but my scans and biopsy’s show only slight inflammation of my liver but it also shows damage to my liver. They say I have AMR but it’s not significant enough to treat. I’m sort of living in limbo. It’s scary because I have all the things I had when I needed my second transplant. Nausea constant, acites on tummy and legs (I look pregnant this last couple of days and people keep treating me like I’m about to give birth lol) itching like a crazy lady, the list is endless. I’d usually write all this on my personal fb page but iv been told in a private message that people are getting fed up of reading my posts. This then leads to me feeling very down and depressed 264 miles away from my family in Manchester. I’m lucky to have a few liver buddy’s that have been to see me over this last 10 days. Chelles family have been my rock as I hope I have them, Gareth who just lights up the room, and jojo who keeps in tough thru social media. Sorry for the long post I needed to get it off my chest.

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littleleah86
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29 Replies
Gemma68 profile image
Gemma68

I'm sorry I've no advice regarding your symptoms but as far as your Facebook "friends", if they have a problem seeing your posts about your health issues, block and delete and tell 'em to go shove it. If they don't like seeing it, then they don't have to. I hate Facebook for one of these precise reasons, it seems to be full of stupid self-obsessed morons who only like to post pictures of themselves and what they've had for dinner... 😡

Those people really aren't worth your time and precious energy. They don't deserve your friendship if they're that f***ing shallow.

in reply to Gemma68

I couldn't agree more ! X

Millie09 profile image
Millie09 in reply to Gemma68

Well said! I came off fb two years ago. Did my head in .

Gemma68 profile image
Gemma68 in reply to Millie09

Not been on there since my birthday 2014, been the least stressed four years of my life. When you have health problems and you're surrounded by unhelpful morons, remove yourself from the situation. But not everyone has to go to those extremes, the block feature is bloody handy in this scenario. 👍🏻😁

Millie09 profile image
Millie09 in reply to Gemma68

Oh it gave me anxiety on top of anxiety!! Was fed up of people on messanger slaggimg off othets and they were slatimg about her to me .🙄. Can't be dealing with such childish nonsense! Oh at least we could bkock them at least lol. Xx

Gemma68 profile image
Gemma68

Sorry for the outburst, I've calmed down now lol. This is what this forum is for, it's a little safe haven away from the idiots full of lovely people who are nothing but supportive. Welcome to the clan. 💜

littleleah86 profile image
littleleah86 in reply to Gemma68

Thank you. It winds me up as some of the people saying things are like family to me and it’s really shocked me. My next door neighbors are more concerned than them. They knock on asking my hubby for updates every couple of days. Xx

in reply to littleleah86

Those are the kind of people you need in your life xx

Gemma68 profile image
Gemma68

Comes to something when the people who you wouldn't think would take the time become the ones who show they care the most... xx

Isabelle2 profile image
Isabelle2

Hi

I’m so sorry for you. I had a tx a yr ago and everything is fine at the moment. It must be a real pain. The distance must be a terrible handicap for your family wishing to come and see you. At least you’re at a great tx centre. I have no advice to give but am sending a very very big virtual hug!

Isabelle x

littleleah86 profile image
littleleah86 in reply to Isabelle2

Yes it’s hard as family want to visit but they have own health problems and responsibilities and with what happened first time round they spent a lot of time down here with me. It’s my birthday on Thursday so hubby is coming to visit for a few days which I’m excited for x

Isabelle2 profile image
Isabelle2 in reply to littleleah86

I hope you have a good birthday (as good as it can be in hosp!) and that you feel better soon!

littleleah86 profile image
littleleah86 in reply to Isabelle2

Thankyou Isabelle x

in reply to littleleah86

🍰🌻

in reply to littleleah86

Happy Birthday for Thursday ..... it's mine tomorrow. ... gulp ! X

littleleah86 profile image
littleleah86 in reply to

Happy birthday for tomorrow x

Millie09 profile image
Millie09 in reply to

Happy birthday hun for tomorow xx

in reply to Millie09

Thanks Millie xx

Millie09 profile image
Millie09 in reply to

Your most welcome hun xx hope you have a wonderful day x

in reply to Millie09

You are so lovely millie. As long as the sun continues to shine tomorrow I shall have a good day 🌞🌞🌞🌞

Millie09 profile image
Millie09 in reply to

Oh why thank you ! And so are you too, oh the sun will be ablaze 😎🌝🌝🌝🌝x

Thankyou xx

Millie09 profile image
Millie09

Sorry to hear your news, I am.not famiiar with transplants, not having had one myself yet (fingers crossed) . Good to see you gave a good support network, bless, chelles famiky, I'm still in shock even now and jojo is a tower of strength, hope you find answers soon and stay off fb ... or judt block the idiots xx happy birthday anyway 😊

Gemma68 profile image
Gemma68

How you doing today Leah?

littleleah86 profile image
littleleah86 in reply to Gemma68

Been a bit down today. Feeling heavy with fluid and really itchy so can’t sleep. Me and my husband have talked and have decided that we are going to try the treatment if it doesn’t work then we won’t be any worse off. How are you? Xx

Gemma68 profile image
Gemma68

I'm doing ok thank you, bit of a low energy day but not surprised in this weather.x

Gemma68 profile image
Gemma68

Hope you manage to get some rest today.xx

Edbergius profile image
Edbergius

Hi Leah, I think this is the conclusion as to what happened after my brother's transplant. He had jaundice and ascites about 20 months post tx but initially his test results didn't show any liver damage and they thought it was a bile duct issue. It is good that they have picked this up quickly and hopefully the suggested treatment will resolve it for you.

littleleah86 profile image
littleleah86 in reply to Edbergius

Well it’s not been too quickly iv been rejecting on and off since last September at 11 months post and they have only just decided to look more into it. I just really hope the treatment will work xxx

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