Being referred to Birmingham

[Brightstar15]

Good morning all you lovely people. Well after all this time my gastro consultant has now decided that I now need to be seen in Birmingham. I live in South Wales and have no liver hospital near us. He has actually told me that I have advance cirrhosis. Which I wanted him to tell me long time ago, has you can see from previous posts. Can anyone on here advice me on when should I receive the referral and what to expect when I go there? To be honest I am happy that someone else is going to be seeing me too, but absolutely frightened to what all this means. He did say I am young 50 but feel 90 at the moment. He also said to my hepatolgist nurse why have we not referred myself long time ago. Now totally confused scared. Just don’t know what to expect because he left room and did not really explain. Any help would be very much appreciated. Take care my lovely people. x Anna

[Hidden]

Hi Anna Brightstar15

I know it has been a long journey to get your diagnosis, hopefully the team at the QE can now support and care for you and there will be a clinical plan in place.

I am sure the forum members will share their own personal experiences with you which I am sure will be a great help.

Please remember you are not alone and if you ever need to call our helpline for a chat myself or nurse Kirsty can speak with you on 0800 652 7330 Mon to Fri 10am to 14.45

Warm wishes

Trust1

[Brightstar15 in reply to Hidden]

Thank you so much Trust1

[ThreeSmiles]

Hi Anna

Rest assured you are going to be in great hands from now on! 👍. Really - they will sort you out one way or another. One thing for sure you will get to know the liver clinic very well after a short time.

It is a long way to go for you it’s true but you won’t regret it - almost guaranteed.

Don’t worry about the first session they will just be getting to know you.

First you will be weighed and your blood pressure taken - by nurse. Then you will have blood tests although they now seem to have swapped that around so you see the Consultant first - which is better because he//she will decide the suite of blood tests required. Sometimes you can have 8 tubes taken 😑.

Blood tests are done by a different nurse.

In general- your appointment runs to time- but obviously not every time!

The Consultant will have a nice good chat with you 20-30 mins.

Absolutely nothing to get worried about - just relax and know you are going to be well looked after for sure.

First appointment may take a while before it happens Maybe it depends how urgent they consider your case to be? But I have no idea if that is so or whether it’s just luck! However after the first session you will be seen at regular intervals.

Eventually they will determine whether you need to be assessed for a Transplant. Tbh I was so relieved when they that I was needing that Assessment and even more pleased when I got on the Transplant List - THE List.

All good for me 14 months on.

It’s all cool - so Good Luck, Anna. 👍

Miles

[Brightstar15 in reply to ThreeSmiles]

Thank you so very much for your reply! I feel a little more at ease now, you actually have explained more than I was told on Monday! I read your message earlier and for the very first time felt very much more optimistic for my future. Has I said I am only 50 and I was blessed with another granddaughter a week ago. That’s all I want is to be able to watch them grow up, and to be able to me a much more hands on nan. Hopefully I be able to have much better life than I do now. Your an inspiration thank you again Miles. 😊

[ThreeSmiles in reply to Brightstar15]

I am very pleased, Anna, to be of some little help!

Good luck again. Maybe you could keep us all up to date with how you get on 👍.

Miles

[Hidden in reply to ThreeSmiles]

Loved your first reply message to Brightstar 👍

[ThreeSmiles in reply to Hidden]

😳

[Hidden in reply to ThreeSmiles]

Hopefully above clear now👍

[ThreeSmiles in reply to Hidden]

Aha thanks 😀👍👌

[Hidden in reply to ThreeSmiles]

Yes, I think many people reading this who are in a similar situation will have been out at ease. Love and hugs to you and yours Lynne

[ThreeSmiles in reply to Hidden]

Morning Lynne. Or not!! ☹️.

Just woke up but this time I’m 90% sure it was just the need to wee. But of course now awake the normal things kick in! Blooming typical, eh!!

I don’t have to ask about you 👎 . Bummer!

Well hope you get to sleep or get back to sleep or preferably are now asleep!!

Miles

[ThreeSmiles in reply to ThreeSmiles]

Oh well ofeckman is awake as well 😞

[Hidden in reply to ThreeSmiles]

I pm you a few minutes ago. Came to bed early and had 3-4 hours! A miracle, in still exhausted through so many nights if no sleep!! Take care Lynne

[ThreeSmiles in reply to Hidden]

I gotcha! Ta!

[Hidden in reply to Hidden]

Sorry to read another bad night like many others and having to PM too! Lucky me 4.5 hours sleep !

[Hidden in reply to Hidden]

I did get 3-4 which is great for me but this meant I've still been up a long time!!! Xxxx

[Hidden in reply to ThreeSmiles]

Great reply ThreeSmiles Miles

[ThreeSmiles in reply to Hidden]

😳

[Huggy7614]

Morning Brightstar,

Well Miles has described the process quite well. I was referred last dec (28th) and then went to see hepatologist middle of feb!! On that first consult he said there and then that I need to go on transplant list. That shocked us. (I didn’t think I was that bad!!) went through assessment during end of March and April. And transplanted in May!!!

They’re a lovely bunch at the qe, have even made friends in the waiting room! Building looks like an airport!! Top tip, don’t have a Costa coffee before appt, it sends your blood pressure high!! Wait until after!! There’s a couple of places in the foyer!!

Good luck. Andy

[Brightstar15 in reply to Huggy7614]

Thank you Andy looks like you had no time to think, but you have had a great outcome. I am just so anxious now to Know when will I hear anything of QE. Just wondering how long for assessment. Regards Anna

[Hidden]

I was transferred to the QE and 7 years later had a transplant

In all that time the treatment and care has been fantastic, and now living a full live

I agree with Three Smiles you are at the very best place now. Dont worry they will really look after you.

If you like hot curry the restaurant does a snorker

David

[Brightstar15 in reply to Hidden]

Thank you David, at the moment any sort of food is making me feel nauseous. But hopefully I will get my appetite back. Kind regards Anna

[Dallo100]

I live in St Helens, Merseyside. I had my Liver Transplant at Queens in 2015. It's a fantastic hospital with well trained staff. I promise you the staff are absolutely brilliant, you will be well looked after

[Brightstar15 in reply to Dallo100]

Thank you so much for your reply! It’s so reassuring to hear of people that I will be in good hands. Hope your well. Thanks again Anna