Referral has come through, advice please.

[Lils2019]

Hi all,

So husband has finally had his appointment come through to attend outpatients next month, after his liver consultant did the referral.

Not sure what to expect, what do they do, do they review all the medical history and what’s happening now with him, what about assessment for transplant, will that be discussed.

Any advice would be great, thanks all.

[Hidden]

I hope this helps:

britishlivertrust.org.uk/in...

[Lils2019 in reply to Hidden]

Thank you Phil,He’s had appointments with his liver consultant but he’s referred him to the QE to get the transplant process started.

His consultant said his liver is not going to improve without intervention and his health will start to decline.

His mobility is very poor, he feels unwell most of the time, feels sick, bloated, and the fatigue is just something else. His teeth have decayed and been snapping off, liver consultant doesn’t want him seeing a dentist because of the excessive bleeding and risk, so has referred him to the team at the hospital, he is eating quite well now, and were still waiting to see dietitian, we’re keeping away from processed foods and salt, but at this point I’ve said just eat what you want, as I don’t think diet at this point will make much difference.

[Hidden in reply to Lils2019]

Better to eat something than nothing I guess. Do you have any idea when the appointment will be?

[Lils2019 in reply to Hidden]

Hi Phil,Yes he has his 1st appointment at the QE in Birmingham in 3 weeks.

Another thing we’ve noticed is that he has what I call a sugar crash, whereby he needs something to eat straight away, basically because the liver isn’t working as it should he’s obviously not storing the energy he needs, so he needs food little and often, so I keep biscuits, cake, and stuff like that that he can access quickly.

He’s eating lots of bananas, yogurts, rice pudding that sort of stuff too.

[Yellowsydney]

If he's been referred to the transplant team they will go through his medical history, review his medication and if they believe he is a suitable candidate for transplant he will be asked to do a transplant assessment, this would involve several days of medical tests, ct scan,, x ray, lung function test, heart tests are to see if he is fit for transplant.You may find the following useful goes through the transplant process.

nhsbt.nhs.uk/organ-transpla...

We also have a friendly and knowledgeable Facebook group called 'liver transplant support uk '

Hilary

[Lils2019 in reply to Yellowsydney]

Thank you,That’s very helpful x

Take care x

[Kristian]

Basically the first one is likely to just be a normal clinic visit. Yes, just to get to know him and his current symptoms, experience etc. So its a good idea just to jot them down so you remember them, I always tended to forget and think after, "damn, forget to mention x, etc".

From this clinic they'll probably look to determine if now is the right time to put him forward for transplant assessment or whether it can be left a bit longer. Dont worry to much about that though. Its a good thing and that's the whole point about being referred to the tertiary centres like Birmingham. If they don't mention it, by all means do ask the question. They'll be happy to answer.

Good luck to you both and hope all goes well.

[Hidden]

Hi Lils,

You are welcome to call the nurse helpline for a chat, we also have some great virtual support groups to look at too, here are the links;

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in...

[Lils2019 in reply to Hidden]

Thank you x