has anyone been told they are unsuitable for transplant ?

[Willow1950]

I have cirrhosis and was last June diagnosed with liver cancer, HCC , fortunately I have received TACE treatment which is as I’ve been told , a treatment not a cure, fortunately I have so far been responding well to treatment, at the beginning I saw an oncologist in Harley Street who said if I was able to have a transplant I would be cured , no more cirrhosis or cancer , so of course I was boosted by this news, I also went to the Cromwell Hospital and met with a consultant who told me If I could be put on the list he could perform a transplant , unfortunately I have since been told I do not meet the criteria , although I have not received any tests to see how viable it would be for me, ,when asking Why ? firstly I was told the tumour was too large , ( 3 and a half cms ) it has since shrunk since the treatment too. Secondly I was told the outcomes are not good, (I’d probably not live beyond 12 months,) thirdly it is my varices , I have never had a bleed and no swelling I’m also very active , I can’t help but think it is my age. I know I’m very lucky to feel so well at the moment but as I expect , I will deteriorate over time. I just wondered if anyone else has had the same experience ? I have been very fortunate to have a very nice kind oncologist and gastric Doctor and I don’t want to seem ungrateful but of course, I don’t want to give up either,

[oap74]

I was also told not suitable but I can’t remember the reason, just excepted it because mine is ARLD cirrhosis on the bright side if I hadn’t had it they may not of found the liver cancer. I’m 75 now an age I didn’t expect to reach just keep smiling and enjoy the bonus time you have. All the best.

[Harriet-sarah]

hi I’m sorry your going through this I e just put a post up similar to this, I went to see my consultant and she said if she referred me (April) then I’d be turned down as I’m too ill so she said do I neeed a liver transplant yes, am I suitable no not yet I have to get strong enough to get through even the op. She even wrote a letter to my GP saying it was a realistic option that my prognosis may be too short for a transplant. Then I was Consultant Wednesday and now she said she’s not putting me forward cause I’m too well and no clinical signs present enough to give me one. So I went home upset and took my own NG feeding tube out, and thought sod it they don’t even know how long I have to live and I ain’t getting dragged down by it and I’m going to live my life how I want to. As soon as I took my tube out I told my clinical team (but my consultant never got back to me) so sod the Doctors I think they have been awful in my management and not even considered my mental health.I’m not suggesting you do what I have done, but just wanted to say I understand what you are going through, you feel bad for complaining your doing well, but in my eyes I’m doing well to get the transplant so I can increase my life expectancy but people don’t understand that they are all saying but this is positive news! Why am I fighting! And yes in short term it is but without the transplant I will be always living in uncertainty. I hope you get a second opinion.

[Alibaba80 in reply to Harriet-sarah]

I completely agree. I too have been treated dreadfully by doctors I have very little quality of life because I feel very very ill most days. I too need a transplant to save my life and they won't give me one because my bloods are not ' deranged' enough.

I think it's dreadful how they pick and choose who can and can't have a transplant based on whose bloods look worse on paper even if some people don't even feel particularly unwell!

[Harriet-sarah in reply to Alibaba80]

there is another score you can go on which consultants don’t normally do it called a transplant benefit score. I asked what my UKELD score was 53 (49 is a miminum for a transplant) then I said ok then we’ll what’s my Transplant benefit score,this took her off guard as she wasn’t expecting me to ask that. And she just screwed her face up pursed her lips and glanced at the the computer screen and said ahhh now that’s a bit more difficult to score, so I said I want to know then she changed her tune and said she can have a chat with the transplant team to see if they will do a ‘get to know you appointment’ I said 2hen she said it would take time about 3 or 4 months to get appointment. I agreed at least it was a step further, in the meantime I phoned my GP to do an urgent r3feral to Stoke for a second opinion. It sounded like he couldn’t be bothered saying I will have to go through all your notes! I was like well do it u are a GP!

[Alibaba80]

Yes exactly it's their job they should be doing itMy doctors never ever help me.

Can you eat by the way?