What happens after the liver referral?

[Snips71]

The blob on hubbys kidney has disappeared which means that he has been referred to Birmingham QE to see a heptologist.

Today we received an outpatient app to go on Feb 6th. I’m assuming that this isn’t the TPA so is this so that they can meet him and go over what he’s been happening so far that brought him to this position.

Has anyone been to the QE. May I ask what happened and how things went.

We are both full of weird emotions because even though the past 6 months have been a big reality check especially when he was told that no-one expected him to still be here. Stubborn old bugger is my hubby🤣😂 it’s seems even more real. I know it sounds stupid.

Any info on what happens next would be greatly appreciated.

Suzie x

[Shep666]

I was "done" at the qe - what do you want to know 👍😀

[Snips71 in reply to Shep666]

Hi Shep thank you for your reply.

I was wondering what the process was from the first appointment up till having the transplant if we are luckily enough to get that far.

We are going in 2 weeks for the first app. I am a nurse on our intensive care unit here in derby but my mind is mush and I’d like to know a bit more.

Thank you again

[Chasdog]

Hi Snips, the first appointment with the Hepatologist is unlikely to be for an assessment as the dr will need to discuss your husband’s condition first to identify the problem. Following that, they will likely do some tests, scans etc. QEHB is an amazing place and the Hepatology team are fabulous. I had my transplant at QEHB and continue to have my follow up care there. I would not be here today without the skill, dedication and care of all involved in my care at QEHB. You could not be in better hands. I wish you and your husband all the best. Take care.

[Snips71 in reply to Chasdog]

Thank you so much for your reply. I am so pleased thy you are doing so well that’s amazing.

It’s also good to know that the QE is a good hospital. I would at the Royal Derby in the intensive care unit but even though I know a bit my mind is mush 😂.

Thank you again x

[ThreeSmiles]

Hi Snips

I was referred by Derby to the QEHB. Did you see Prof M (the QEHB specialist who comes to Derby every couple of months?). I can - if still needed - recap my story which I think I have put on here before (some years ago)?

Miles

[Snips71 in reply to ThreeSmiles]

Think I’m blind as well as having a brain for mush. Can’t seem to find it. Found the ones about your hernia. Would you mind telling me please.

[ThreeSmiles in reply to Snips71]

No you’re not blind or mushy brained ! Seems old replies are deleted - I can only see my own originating posts and new replies. Maybe it’s a new feature on here 😀. Please see below.

Miles

[Snips71]

Hi Miles. No we never met him. Just saw the Derby team.

I’ll look back at your posts to see your story. I work at Derby on ICU it was a bit surreal when Kev ended up on there twice.

Thank you for replying.

[ThreeSmiles in reply to Snips71]

Hi again!

I suppose the process differs depending on each person’s situation. I had been going to the Derby Liver Clinic for about four years before being referred to QEHB. (This was in 2018)

I think you will find quite a difference between QEHB and Derby - hard to put my finger on specific differences but Birmingham are very much more Transplant focussed (unsurprisingly!) than Derby.

At first it will be just an “ordinary” Clinic - getting to know you sort of thing as I remember. From my diary it was only two months from my first Clinic to my Assessment.

The First Assessment is one day and if you proceed after that there is a detailed two day Assessment a few weeks later.

Hope it goes well for you - please keep us informed!

Miles

[Snips71 in reply to ThreeSmiles]

I will do. Thank you so much for telling me your story.

Did you find it helpful keeping a diary.

How long ago did you have your transplant if I’m ok to ask.

[ThreeSmiles]

TBH I wish I had kept a diary - I just had to go back through my iPad Calendar 😂. What I’m really surprised about is how soon my Calendar shows from first QEHB Clinic to Assessment. Mind you I was suffering from very bad HE episodes and brain fog at this time 🫤. From “real memory” (there’s not much of that 😂) I would have said it was more like six months so it may be that I have not recorded a QEHB trip in the Calendar. I can say the Assessment dates are spot on:-

Assessment - 1 day - 12 February 2018

Assessment - 2 day - 21&22 March 2018

I got on the Transplant list on the the 26 June 2018. There was a long delay because I had to do a heart stress test involving a nuclear injection - this was done (top floor) at Derby.

I had my first call for a TP 6 weeks after going on The List. Liver wasn’t acceptable but got my next call just two weeks later.

Transplant on 27 August 2018.

Miles

[Snips71 in reply to ThreeSmiles]

Thank you so much for telling me all this I appreciate it.

[ThreeSmiles in reply to Snips71]

Good luck on the 6th.

[Kristian]

The process as far as I remember it is thus:

Prior to referral for transplant assessment you will be referred to the hepatology team at the QE. This will either be at the QE itself or at an outreach clinic at your local hospital if you are a bit far away. This appointment is simply so the hepatology team can get to know you and assess you themselves to be sure that now is the right time for you to go through the transplant assessment or not. Its nothing sinister though, they really want to help you understand the process a bit too. They'll want to understand any symptoms you have or any complications you may have had too, particularly if anything has changed recently.

In my case the decision was made during the consultation to refer me for assessment and I was just asked to confirm contact details so the team that books the assessment could get in touch. I suspect in some cases they may need some updated results, but that may not always be necessary.

You'll probably have regular clinics with the team in Birmingham from then on too.

Good luck.

[Snips71 in reply to Kristian]

Thank you that’s helped me a lot to understand. I’m hoping that they will send him for the assessment as we were told that he was lucky to be here as most people would have unfortunately died by now.

Thank you for replying

[Kristian in reply to Snips71]

Quite possibly. Being referred is a good thing in my experience.