Psychological and fitness assessment form

[Bootsforlife]

Hi, I’m filling in my transplant assessment form for a meeting in a few weeks time and some of the questions seem vague. There is a question regarding how healthy I feel today with a scale from 1 to 10 ( eq5d ). Does this refer to mental, physical or general health ?

Also , if you say you feel too well does this put me further down the waiting list urgency for transplant ? There are also questions regarding fitness , I’m worried if I say I am less fit than I used to be that would affect my physical strength to undergo surgery but that if I say I and still as fit as I was then that would mean my quality of life is not greatly affected so liver transplant is not urgent or needed.

My last question is are there any trick questions I should be aware of ?

Any advice greatly appreciated.Thanks

[AyrshireK]

Hi Boots, welcome to the forum. I don't know which centre you are under that has this questionnaire because not all centres have such a thing (certainly there wasn't any such written form during my hubbies assessment - at Edinburgh - in January).

There are no trick questions during transplant assessment, they are purely about making sure you receive the most appropriate treatment for your stage of liver illness so the assessment process looks at your liver and over all health to make sure you are actually poorly enough to require transplant - transplant is generally considered to be a life saving operation only and is only considered once all other possible treatment options have been tried and/or ruled out.

They also need to check that you are fit enough to undergo the procedure - heart & lungs are healthy and that you have no conditions that would make it too risky to put you on the operating table and you have nothing that would debar you from transplant.

The how healthy do you feel now has got to be answered taking into account all the factors you say - physical, mental, general health. How ill are you? What sort of toll is being ill having on you day to day? Put all these together and pick your score. Some people feel very well, even working up to the day of transplant but inside they may have something like liver cancer that gives off little in the way of symptoms. Other folks may be totally different with chronic fatigue, ascites, itching or HE (my hubby has this and he wouldn't even be able to read, understand and answer such a questionnaire).

As regards fitness, answer it honestly, do you still feel quite fit - good, you'll have hopefully an easier time to bounce back post-op if they feel that's the direction you need to go. Or if you feel like absolute pants and can't get out of bed most days then they need to work with you to get you as fit as possible for transplant. At most centres they assess your heart and lung health with either an exercise bike session or treadmill hooked up to all sorts of monitoring stuff. At hubbies assessment in January they said they sometimes get people who are too frail to even get on the bike unaided. You just do your best to get through the assessment process. They will assess your nutritional needs and appetite, my hubby ended up having a naso gastric feeding tube fitted during his assessment because they felt he was potentially borderline for not having enough reserves to get him through the op.

Being 'too well' for transplant is actually a good thing, transplant isn't always the golden ticket to life renewed. It is a life saver and some folks do feel worse post-op than they did before though everyone hopes it'll turn things round for you. You are always best to keep your own liver going for as long as possible but once it's too far gone and they can do no more for you then that's when transplant comes along as a treatment option.

I would point out that they don't really do transplants to improve your quality of life - because there is absolutely no guarantee that it will. Ok, if you've got mad pruritis (itching) or so dreadfully ill that you can't function day to day then yes, hopefully, it'll improve your life but you don't get them just because you are exhausted or whatever.

Donor livers always go to the most poorly person waiting so someone who is generally fit and well or has less symptoms is always going to wait longer than those who are dreadfully poorly.

Answer the questions honestly, think about your overall standard of health. They arn't trying to trick you or catch you out, assessment is a very supportive time and someone must have felt that the time was right to put you forward but if the answer is no at this time then it must mean you are relatively ok.

My hubby was assessed and listed in 2014 and was on the list for 10 months before improvements in his bloods meant he was never going to get a call so he was delisted in 2015. We lived 9 (decentish) years (now that we look back on them though at times we felt that he was living merely a half life) then at the back end of last year he went dreadfully down hill with Hepatic Encephalopathy and was assessed and listed again in January and we await transplant though because his bloods are generally good and he has no other obvious signs of decompensated liver we've been told he probably won't get a liver via the national allocation system and are probably waiting a locally allocated cardiac deceased liver.

Best wishes for it.

Katie

[Yellowsydney]

Hi, never filled in a form like that just chatted with the transplant consultant. There is a very fine line between being I'll enough to need a transplant but fit enough to go through what is one of the biggest operations there is. Answer truthfully about physical health, it will all be tested during assessment anyway. I never felt ill before my transplant, was fit and active but my liver was in a really bad way. The transplant assessment will give all the doctors involved a clear picture of his physical and mental health, I never had any mental health assessment.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, and can tell you what it's actually like to have a transplant not a doctors view.

Hilary xx

[Oldbits]

Hi, hubbie had a form for kings college pre his assessment in 2021. Yes it is a bit vague....but no trick questions. If I remember it did have different sections. But it was just an initial questionnaire and they did a fitness test and physiological assessment at the hospital. I think it was mainly an indicator to see how poorly you are and how much they would have to do to get you fit enough for the op. My husband was quite fit but it was his bloods, biopsy and scans that meant he was put forward for assessment and not how he had completed the form. He also had to complete a food diary for a week before his assessment. Just be honest as with liver disease you get good and bad days. Good luck