Part 1 of my liver assessment

[bushburywolf]

Finally got put forward for part 1 of my liver assessment for a possible transplant, it's going to be a very long day on Monday and I will be 7 days post drain, so I will be like a beached whale again, grateful to be finally put forward for it and a bit nervous, any advice on what to expect or what to ask would be gratefully received

[Grassroots112]

Sorry I have no advice for you, but I do wish you the very best and good luck, take care.

[RainbowLover]

Good luck and I hope it all goes well.

[Sirted]

Having gone through it at King's. The team are very helpful and most of it is tests that are the usual CT Bloods etc. The fitness test is the challenge. My advice is to throw the kitchen sink at it. A few minutes of flat out exertion. Keep in contact with others on the assessment

[Mufan99]

My partner had his assessment at the Royal Free, and it was a long 2 day process. These are my non-clinical observations.

Basically it is a risk assessment to find out how poorly you are vs. whether you have the strength and stamina to undergo the transplant and recover from it.

If you have recently had some of the tests required they usually won't repeat them unnecessarily. Definitely blood tests, and they will be just as interested in the kidneys as the liver because they need to be working well to help post transplant recovery. There will be tests for heart and lung function. An ECG for sure, and the fitness test might be quite physical, but they can also induce the stress reaction they need to monitor with medication if your mobility is limited. That is how they tested my partner. Probably a chest X-Ray or a scan, different teams have different approaches. There may be an EEG to assess the underlying risk of encephalopathy. I don't really understand how those results are interpreted. My partner was LOW risk, but wasn't NO risk.

As this is Part One I think the next step will be to feedback their initial thoughts, suggest any further tests or observations they need and if you are at the stage to go on the active transplant list a discussion to make sure you understand all the implications of the operation; before, during and after. (That discussion was on day 2 for us. It may be at another time for you as your schedule is different.) This was the most difficult part for us because due to COVID precautions I couldn't be in the room to help with the questions that come to mind as the tsunami of information hits. We did the next best thing and I was on speaker from the hotel to the hospital and doing a psychic handhold as we talked. If you can, have a supporter with you at every step. How many times have I been asked "What do you think they meant when they said............."? And if neither of us knew I'd be the one sending the email!

I wish you all the very best and I hope the outcome is what you need and what you hope for.

Andy

[Yellowsydney]

In my experience take a book, lots of sitting about but I had my assessment as a 3 day inpatient. Lots of tests on every part of your body, blood tests, ecg, lung function, CT scan, chest x ray, ultrasound of your heart, lots of talking to surgeon, aneathatist, coordinators, dietician. Take a notebook so you can note down things you are told and questions you think of to ask.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.

Good luck

Hilary xx

[Mufan99 in reply to Yellowsydney]

Hilary, that is a very good call about the notebook, I forgot that. Also don't forget your phone charger. Even though it's only a day there is nothing more frustrating than running out of charge.

[lonmallin50]

it’s all very straight forward had mine at QE they go through the op and chances of success how to prepare for phone call when you get it then I seen the surgeon and dietician and health worker mine was 2 days good luck for transplant had mine 7 months ago the difference you feel afterwards is unbelievable I feel like I’m 16 again

[Mick1414]

Good luck for your assessment, hope all goes well.