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British Liver Trust
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Update

Hi all

Had my clinic appt that went well I asked about the new listings and how it effects somebody like me who although need a transplant am not super urgent.my consultant said they feel it has a positive impact and seems to be working well but it’s early days.what I didn’t realise is that it really only effects brain stem livers in that other livers from deaths such as say heart failure the hospitals still have control over.also all the hospitals are doing research using the liver testing machines so hopefully they will be used clinically all over rather than just addenbrookes who do use it prior to transplant.

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Yes, I agree with you that it needs to be done all over. Take care Lynne

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It’s a shame the information has been drip fed. I hope your appointment went well x

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Hi football. Well at least its positive news. So another muddle up on the new transplant waiting lists.🤔.

I have seen that machine being used on a documentary., it's fantastc! And i totally agree it should be across the board and not just one hospital

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The machine is in all the transplant hospitals but addenbrookes is the first to use it clinical, others will no doubt follow suit

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I thought i had seen it being used at the QUEEN ELIZABETH HOSPITAL. thanks for the correction .😊

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Yes it was and I thought they were using it all the time but apparently it’s still only for research there. This is what we was told

Huw

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What a shame i will mention it to them when i go in May.. thanks huw.

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Hi Football, I am happy to hear your appointment was positive!

Can you answer a question for me...... From your post above are you saying this new process of allocation of livers is for brain death donors and not cardiac death donors? It seems this new process is confusing - for me at least..ha,ha,ha. My liver was a cardiac death donor.

Always, thinking positive thoughts for you and for every wonderful person on this site! Be well everyone X

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Hi hope

I was chatting with a doctor regarding various samples I’ve agreed could be taken when/if I get lucky enough for a transplant and she was explaining about the machine they use to test livers and the change with the list,she said that the National list is now the way forward and a computer does all the matching and so on but it’s for brain stem donors but the 6 transplant hospitals still have control of other sudden death livers like heart failure .i presume this is regards the timing of possible transplantation. All seems confusing but that is what myself & donna were told.hope your doing well hope

Huw

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Thank you for replying, I understand a little more now. I hope you get defined answers. It must be so exhausting for you & Donna. Support is our life line. Thank you for asking, I'm doing well just dealing with side effects of meds and ptsd. Working through it all. Keep your HOPE strong. X

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Hi Huw. Thanks for the information. I was going to ask myself next week. Gradually coming to understand how this new system works. I have got to wait for brain stem liver because I’ve had 3 transplants earlier in my lifetime so this will effect me. Glad your appointment went ok

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Hi smyally

Hope you get your call soon, when you see your consultant and ask regards list please let us know as will be interesting what is said by different hospitals

BW

Huw

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Hi Huw

Thank you for explaining it all, you made it so much easier to understand. I'm not at transplant stage yet but I do seem to feel worse each day. I just try to remember there's always someone worse off than yourself. I try to think this way but my pain gets me down sometimes.

Take care and once again thank you

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Hi Lynne

Sorry to hear your feeling so poorly do you think transplant is the way forward for you as I know from being on hear that there is so many different illnesses regarding the liver and so many different treatments.there possibly are others worse off but your illness is the one that matters to you really hope you start to improve you’ve been a great help to me and to plenty of others on this wonderful forum

BW

Huw

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Thank you so much. I make myself go out each day, don't want to seize up !!!, How are you today

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Am ok thankyou Lynne am still working but on reduced hours 6 per day due to tiredness but feel lucky as work have been super supportive to me so hopefully I can get back into work ASAP after the op

Huw

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I really hope everything works out well for you Lynne

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