I attended a two day liver transplant assessment on 22nd May which was hard work but I gave it everything to keep going and do my best. They promised a result on the Friday after by phone. Eventually i got the call after waiting anxiously all day to say they had been to be busy to discuss my case and it would be deferred to the following Friday. Yesterday i waited all day again after a rough week with my liver. sleeping loads and very run down mentally. Eventually I phoned at 5pm to be told my consultant wasn't in and the meeting is now next Friday.
I am totally gutted, I have set my hopes on the transplant as the only way to regain some normality to my life and have no idea of results. I am feeling very low but don't want to ring the hospital before next Friday as dont want to upset them and get a negative response
Has anyone else experienced this, thank you for your advice in the past over issues posted.
Written by
Mitmab
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Hello Mitmab, I’m sorry to hear about the lack of communication by the transplant team.
A person's liver journey is sadly full of twists and turns, ups and downs. This phase of your journey is probably the hardest part.
Being involved with several hepatologists, I am amazed by their workload, and often wonder how they manage to cope.
The other week I was at the QE Hospital Birmingham. A professor hepatologist I’m involved in a project with was giving a talk at 2:00 pm that afternoon. That morning, his working day started on the wards at the Royal Free in London. He then travelled up to Birmingham to give his talk, and then drive back. He told me later that he was even on a call when he was giving his talk.
There just aren’t enough specialist consultants to go around, as liver disease is now one of the commonest serious conditions in the western world today. Sadly the waiting game is all part of the course.
Even after you get to be added to the waiting list, you’ll think that elusive phone call will never happen. Even then you can be on your way to the hospital after getting the call, only to find that the liver isn’t viable and can’t be used.
While you're on your way to the hospital, many things are going on behind the scenes. The surgical team need to be called and present. The harvested liver needs to be checked and tests carried out to make sure it’s viable. These all take time.
I know of one poor lady who travelled from Aberystwyth to the QE Birmingham three times before a suitable liver was finally found. That disappointment and the repeated return journey in silence back to Wales must have been terrible.
It’s not just the patient who is on tenterhooks, but family members, partners etc. They are sharing in this journey with you. They too will be feeling your disappointment and concerns with you.
Just be strong and hang on in there. Easy to say I know, but many on here have been down that same road, Fingers crossed all will come good soon.
The first day was spent with consultant, anaesthetist, surgeon etc and having loads of blood tests done, the second was scans, ecg, lung function tests, cardiovascular
Disturb them. Four questions are the key do you drink or smoke both of these are deal breakers and can keep you from a liver. Are you obese another thing that can kill you. Lose weight if you are. Do you have ant lesions. To large and too many can kill a chance also. But I am from the USA so you might be ok. Keep possitive. My Meld was at 14 last check 12 so I may have a long wait,
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