Waiting to be waiting...: Well after my... - British Liver Trust

British Liver Trust

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Waiting to be waiting...

Identity75 profile image
16 Replies

Well after my last post I might need to make a move on. Just had a call from Kings and they are booking me in for my assessment week. Looks like I'll just be waiting soon...

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Identity75 profile image
Identity75
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16 Replies
Dulux profile image
Dulux

When I went in for assessment I told them on the ward I'd booked a sea view! The cpet test is the only interesting test, the rest were pretty boring, lots of waiting around, take shoes to do the cpet test as I stupidly wore my slippers which firstly looked ridiculous and secondly I could of gone further in my trainers. The worst bit is putting on a brace face when the dr comes round and you have the chat about if you don't get listed, that's a tough one, apart from that I found it all pretty straight forward. Oh I got my middle of the nights obs knocked on the head because it was ruining my beauty sleep. Enjoy!

jojokarak profile image
jojokarak

That's great news grab it hunni x. Here if you need a chat :-)

Gaynorlowson profile image
Gaynorlowson

Good luck on your assessment. And then it's up and onward x

Bonair profile image
Bonair

My husband has his 2 day assessment at Leeds in February. Good luck, i hope everything goes well x

Dorset123 profile image
Dorset123

The whole thing there is not to bad but Lots of waiting, so take a good book!!

If you are coming from far...we stayed at the Listen Charity Lodge...basic but close.

Good luck with it all

Identity75 profile image
Identity75 in reply toDorset123

Yes we are, they said something about a lodge? What's the situation with that?

Lynsangster profile image
Lynsangster in reply toIdentity75

I stayed at one of the Listen Lodge apartments for a few days of my husbands assessment. My kids called it "mums digs" which they thought was hilarious and it really became my haven. Very close to Kings and so thoughtfully kitted out too. As my husband went into renal failure, he was in Kings for some weeks. Of course the Lodges are booked for Assessment families, so I had to move out to a nearby hotel nearby. The Camberwell Church street hotel. I was overcome by the kindness of strangers. Hotel staff and uber drivers. Amazing.

Sadly my husband was not listed but we are achieving some quality of a quiet life with good and some very bad days. We have however, had some of the sweetest moments in our 38 years together bizarrely.

The world shrinks. The Rifaxamin helps. Drains of 12 litres every fortnight are regular.

Sorry. Got carried away there.

But Paul the lovely Organiser for Listen Lodge was efficiency personified. In the flat There was hair dryer, fan (it was last July and hot). Twin beds, TV, shared kitchen and small en suite. It was really a haven for me and I knew I could be on the ward within five minutes

Good luck Hope this may help and reassure

Bless

Lyn

Millie09 profile image
Millie09 in reply toDorset123

hi Dorset .hope things are going well .best wishes linda

dizzime profile image
dizzime

Good luck with the assessment and stay positive. Fingers crossed for you x 😊

Dorset123 profile image
Dorset123

The Listen Listen Lodge is funded by the Listen Trust, a charity run by ex patients I think. It is free for the assessment period (if available). They are double /twin rooms. Ask the TP co-ordinators about it.

Take care

RodeoJoe profile image
RodeoJoe

As others have said take a good book, some box sets or whatever. Lots of waiting around. I was really ill when I went for assessment at kings and had to stay on the ward. In fact the ward was full so I cashed in my private health and got a private room.

Apart from too many blood tests it was all pretty non-invasive. There also seemed to be a good cop bad cop routine with the consultants which freaked me out.

cazer profile image
cazer

Hi I'm cazer I too have been waiting to be waiting but now have my part 1at Queen Elizabeth Birmingham in Feb.l am excited and scared all together...How about you?

I have pbc of 18 yes.best wishes cazer.x

Identity75 profile image
Identity75 in reply tocazer

Think I am going through pretty much every emotion. My last appointment I left with the feeling that they were going to just wait and see with me so to now suddenly get a call saying I'm going for assessment is a bit shocking.

jojokarak profile image
jojokarak in reply toIdentity75

They do just drop it on you out of the blue, you are going to feel every emotion going we all did and all will. Like I said here anytime you need a chat or a moan x

vpinny profile image
vpinny

Good luck with your assessment. I understand it is a scary and uncertain time for you and your family. I had 2 liver transplants within five days in February 2015. I write a blog about my journey and my life since transplant. It is a tough thing to get through but even after everything that happened to me I would still say it is definitely worth it. I am happy to chat and answer any questions you may have.

mylovelyliver.co.uk

Chelle_ profile image
Chelle_

Good Luck! My assessment was over two days and I stayed in the medics accommodation (Listen Lodge had a leak in the roof) Lots of waiting and a lot of information provided. They wont get you to do anything you can do...esp on the CPet. just listen to what they tell you and take your time. Take a book, my mum took her knitting...The docs, nurses and the rest of the team are great and handy at getting most of your questions answered... It's worth writing them down....Also speak to the social worker, especially after your last post. It's important that they understand how your feeling and how they can help you, you also need to know what they can help you with. Your not alone though any of this! Good Luck!!

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