Feeling worried

Hi, I am fairly new to this group, husband has been put forward for assessment for liver transplant at the Royal Free beginning of June. A week ago he was admitted into hospital for infection and has been on broad based intravenous antibiotics to treat. In trying to locate the source of infection he had an endoscopy and 8 varices were banded. That night, so three days ago he had rectal bleeding when going to the toilet, this has now become green so being checked for infection....I am so worried that he isn't going to have the time to regain his strength for the assessment....I know that this isn't a place for medical advice, just wanted to share with people who understand. Thank you

[TT-2018]

Hello there and welcome to the forum.

The assessment is a balancing act, your partner is very ill and that is why he is being assessed. If the doctors looking after him, did not consider him “well” enough for assessment, they would not send him.

I was assessed at the Royal Free and the process is over three days and is exhausting, both physically and mentally. They put you up in a hotel close by and the transplant team are on hand to answer any of your concerns. Please follow all the advice given to you. I wish you both every success. It’s a long and difficult journey.

Mark.

[Hidden in reply to TT-2018]

Thank you, it certainly is a rollercoaster of emotions

[LAJ123]

Hi,

Weakness and loss of muscle mass is the norm for many with liver disease advanced enough to be considered for transplant.

My own experience of the Royal Free was working closely with the dietician to improve energy levels and reduce loss of muscle mass. Obviously it worked as I'm now three years post transplant and full of energy. Played table tennis at the British Transplant Games a year later, sadly only a bronze in 2017 and 2018. Pre-transplant walking, even with a stick, was really difficult. Getting out of a chair took real effort and during the assessment got stuck in the bath at the hotel - was almost late on the first day !

So, you see it can be done. Your husband has one member on the team that makes all the difference - you. Without my partner ( now wife ) I'm not sure if I would have made it.

As TT already said, the process is really hard work but most definitely worth the effort. Be prepared to be on a tight schedule of tests and interviews.

Take care,

Jim

[Hidden in reply to LAJ123]

Thank you Jim, and congratulations on the bronze.....it is reassuring reading your story, and has helped me gain a more positive head.

[Hidden]

Hi Tilly

Just to put a balance versus what TT and LAJ say re the Assessment process - bearing in mind mine were at Queen Elizabeth Hospital Birmingham. The Assessment there is on one day then a few weeks break and then another two day Assessment. I found both sessions really interesting and, in a strange way, very enjoyable and relaxing - not in any way hurried or stressful at all!

Isn’t it odd how the process varies between Hospitals!

So good luck to you both and, however you find it, know - as you no doubt do - that the end result could be fantastic. I cannot tell you how blown away I was when I was told I was going on THE list. If I had any 🇧🇧🇬🇧🏴󠁧󠁢󠁳󠁣󠁴󠁿🏴󠁧󠁢󠁷󠁬󠁳󠁿🏴󠁧󠁢󠁥󠁮󠁧󠁿 I would have waved them from the helipad 😁👍.

Miles

[Hidden in reply to Hidden]

Thank you Miles, it is curious how hospitals differ in their assessment. Thank you for your good wishes and keeping everything as positive as we can.

[Willh0]

Hi Tilly,

When I went for my assessment I was to go through on the say 21st of the month. I was in hospital for a bit before but was due to be discharged on the 7th. I cleared everything for the 2 weeks before my assessment to get myself ready for it. Then my body decided to contract sepsis, and I was moved to high dependence and nearly died, again.

But I made it through that and I was in tears thinking that I had let everybody down and that I couldn’t go for the assessment, I still had a chest infection when I went through tho. The doctors and reassured me that if I was fit I would still be able to go. Eventually I did make it through and it was strange. At times you are just there with nothing happening then a flurry of activity, then back to being quiet again. Each hospital will vary I guess. Anyways initially I wasn’t put onto the list as there were some things that needed to get ironed out but I had to go back 3 months later and didn’t have the assessment but just had a chat and after that I was put on the list.

If the docs don’t think your well enough then they can postpone it for a slightly later time or even if it’s not a 100% yes, then depending on what it was flagged up you can always go back to them unless it is something really major that’s wrong. The doctors will steer you in the right direction and everyone wants it to be a success. The worry about it part was worse than any part of the assessment.

Fingers crossed it all goes well.

Will

[Hidden in reply to Willh0]

Thank you Will for those reassuring words, I am with my husband at the moment and your story will help to lift his spirits