Update : Hi all My hubs left the Qe... - British Liver Trust

British Liver Trust
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Update

Linkinpark
Linkinpark

Hi all

My hubs left the Qe yesterday after undergoing lots of tests to assess him for a transplant.

We were told that he's to ill and won't make it through the surgery.

So now we are pallavive care. Awaiting for the palliative team to get in touch to see what they have to add if anything

I must tell the truth I feel cheated we have had no retirement together yet

But hey oh I guess there's people worse off and moaning won't change anything

Love and best wishes

Dawn xx

21 Replies
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So very sorry to hear that news, it's a great pity they don't assess people earlier in their journeys and keep a close eye on them so that it doesn't reach this stage.

Have you had a read at the BLT page on planning for the future as it is a great source of information when palliative care options are coming into play. britishlivertrust.org.uk/li...

Thoughts very much with both of you, look after yourself.

Katie x

Thank you xx

Hi Linkinpark

Sorry to hear your latest news and hope you receive all the care and help you both require from your loving family and friends!

All my love with hugs for you both

Trish xxxxx

Hiya sorry to hear your news x

I wouldn't give up yet I seen he hasn't long been out of icu, I was in a coma and it took me 18 months to get over that I am surprised they have assessed him so soon... Maybe once he regains some strength you could pursue an assessment again no harm in asking x

No they are saying his heart won't take it they gave given him months to live xx

Hi Dawn. 5 years ago I was given 5-6 month to live without treatment (liver cancer) and no hope of a transplant because I had what was termed as multiple tumours on my liver and so I didn't reach the criteria for transplant. I was told that if I were to go on a chemotherapy trial TACE2 and I were to respond to treatment then I could possibly live 18 months or maybe even longer. To cut a long story short, after 3 years of chemotherapy that knocked me for 6 and left me incredibly weak and muscle wasted, I entered liver failure. Then I was put forward at the 11th hour for transplant and told I would only have a 30% chance of getting one. Well here I am, against all odds, one year post transplant and feeling well for the first time in years. Never give up! The body can be very surprising, as in my case and in jojo's case. I sincerely hope that he starts to gain strength again and rallies round. Wishing you and hoping for you both, all the very best. Alf

Thanks alf x

so Sorry to hear he wouldn’t be well enough to go through surgery I’m sending you a big hug and my best wishes.paul x

Linkinpark
Linkinpark
in reply to Popel

Thank you xx

Aww Dawn, so so sad. I hope you glean a glimmer of hope from what alfred and jojo have said.

To be honest I don’t think there are any/many of us who are in a worse situation than you find yourselves in, so don’t worry about “moaning” which you’re not. You’re just stating very sad facts.

We can only keep our 🤞🤞 for you..

Angus

Thank you xx

Trust9
Trust9Administrator

Good morning Linkinpark, sorry to hear this. I am sure you will get lots of support from the forum members.

The helpline is also available Mon-Fri 10am-14.45pm on 0800 652 7330 should you wish to talk with one of our liver nurses.

Best wishes to you both.

Trust9

Linkinpark
Linkinpark
in reply to Trust9

Thanks

Hell that is bad news, I am so sorry to hear the results of the tests, others have come back for this position so I will pray it happens for you to.

All I say is my thoughts are with you and will pray for you both

David

Thank you x

You know what struck me about your post - the last sentence when you said there are people worse off, and no point to moan. Such a fantastic attitude to have, but I do feel for you both!! Be strong, and remember Alf’s wise words. Never give up!! Andy.

Thanks Andy

Hi

There isn't much else that can add to the advice given here but I would just like to to say that you are both in my thoughts and prayers. Love and hugs to you both Lynne xxxx

So very sorry Dawn xxx

We took great inspiration from Alf and Jo Jo’s stories at a very dark time. Don’t ever give up hope. Look after each other. Find moments to treasure.

Grank’s wife Susan X

Thanks xx

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