Transplant assessment

[Janey1309]

Hi everyone, So after a long 7 months since my husband came home after being being very unwell he is finally going to Edinburgh tomorrow for a transplant assessment. I think I'm more stressed than him! We just don't know what to expect. Any advice is appreciated.

[AyrshireK]

Hi Janey, my hubby was assessed and listed for transplant at RIE in January and I detailed each day of assessment in some earlier posts - if you click on my name you can look back at all these threads.

As your hubbies condition is alcohol related he will have some additional inputs that my hubby didn't - these will be from social worker, clinical psychologist and liver consultant and they really dig into the alcohol usage history and any likelihood to relapse ....... during hubbies assessment week and when on the t/p ward post op we observed a few gents be turned down for t/p this time round as they hadn't yet proved their abstinence sufficiently. They do give them a bit of a challenging grilling - sound proof the bedside curtains ain't.

They may also do an endoscopy during assessment, first time round my hubby had one, this last time he didn't but that's because he'd had one at Edinburgh only recently.

The team at Edinburgh are great though I would suggest on day one you both take food and drink in with you because if they haven't got a bed on arrival you can end up in a wee waiting room/day room for hours.

Take something to pass the time - whilst the week is full on there can also be big gaps between tests and inputs.

Hopefully you are going in with him and supporting him through the process. A lot of work will land on your shoulders pre and post op. so you need to know what's to come and as hubby has had HE (my hubby was very badly affected by it) he might need help making himself understood and understanding everything.

My hubby was assessed and listed in January this year and we are mightily grateful to the wonderful team at Edinburgh who got my hubby through transplant at the end of June. I've also got posts about the transplant and how that all went,

We are now 2 months post op. and possibly moving from weekly to fortnightly clinics. Hubby doing great though he isn't seeing the remarkable improvements the rest of us see ..... he's impatient and thought he'd be doing better than he is though he is doing amazing compared to how very poorly he was pre-op.

Best wishes for the assessment, hope it all goes well. Any questions ask away.

Katie xx

[Janey1309 in reply to AyrshireK]

Thankyou so much for letting me know all this. We are 2 hours away and I wasnt going to stay but think I may just book for somewhere to stay save travelling everyday as I don't drive and don't want to rely on someone bringing me every day. Frantically packing a bag for me incase I do lol. Thanks again I will have a look at your past posts

Janey x

[AyrshireK in reply to Janey1309]

We are in 3 hours away and ended up siting our c'van over there so I could go in every day. I had to learn all hubbies meds, feed regime and more. Post transplant I am still doing lots of caring as hubby can't yet manage his own meds etc.

[Yellowsydney]

Hi, had my transplant assessment at Addenbrookes but they are all very similar. Lots of blood tests, CT scan, chest x ray, lung function test - mine was just blowing into a machine but some do bike tests, ultrasound of heart, lots of talking to coordinators, surgeon, anaesthetist. All done as a 3 day inpatient and told on final day that I defiantly needed a transplant and was fit enough. I was in the list for 8 months.If you use Facebook please feel free to join our friendly and knowledgeable Facebook page called 'liver transplant support uk ' thousands of people that have been in your situation, always someone about to chat.

Hilary xx

[BritishLiverTrust11 Moderator]

Hello

Here is a link to our website with information on liver transplant assessment:

britishlivertrust.org.uk/in...

We also facilitate a range of virtual support groups for people living with a liver condition (and their families and carers).

If you [are in the UK and] would find it helpful to speak to others with shared experience, you can register to join a group here

britishlivertrust.org.uk/vi...

Best wishes

British Liver Trust

[Janey1309 in reply to BritishLiverTrust11]

Thankyou ☺️ I got that

[AyrshireK]

Hope the assessment went well.

Katie

[Janey1309 in reply to AyrshireK]

Thankyou , not the outcome we hoped for but has been put on lola. So hopefully this will help. His ukeld score was 47. I know they know best and I'm kind of relieved he's not being put on list at the moment until all other options are explored as obviously it is a major op. How is your husband doing? X

[AyrshireK in reply to Janey1309]

It is best to keep his own liver for as long as possible and providing he is able to live some sort of life with his own liver it is best to keep transplant in reserve. My hubby was first on the list in 2014 for 10 months and we felt the light at the end of the tunnel was switched off when he was delisted but looking back at what we achieved and did between 2015 and summer last year was amazing. When transplant did come along this year it was absolutely needed - hubby had hit rock bottom with zero other options available.

Hope the Lo-la works for your hubby, sadly it did nothing to improve matters.

I think my hubby has turned a big corner this week, finally seeing the improvements in himself that I and others have been seeing for weeks. Much more upbeat and optimistic for the future.

Make sure you keep an eye out for worsening symptoms in hubby and push for care aa needed.

Best wishes, Katie x