How to get onto the Liver transplant list

[Njovu]

Hi I am a British citizen residing in Mozambique - I have HCC from hemochromotosis - how can I get onto the list / and or to look at living donor transplant from family / friends.... Must I go to the UK or can I send blood tests, scans etc via email?

[AyrshireK]

Not sure how your residential status would affect your chances of having a transplant in the UK. If you arn't resident here and paying taxes and National Insurance contributions then you probably would not be eligible for transplant on the NHS and that is generally the only route to transplant in the UK. (There is some private treatment however I am not 100% sure on the chances of having a T/P - allegedly some overseas patients are able to have transplants here privately, however, there has been some uproar about this with it looking like people are paying to 'jump up the list' - I recently found quotations that overseas patients are only able to receive livers that have been rejected for use by those on the NHS waiting lists, how, true this is I am not sure).

If you were resident in the UK the usual route to transplant is referral to one of the liver transplant units. They do their own transplant assessment to assess your current condition and whether a transplant is indicated at that time, also, they assess your overall health to see that you would be fit enough to endure the procedure and lengthy recovery period and that you don't have any other health conditions that would prove a barrier to transplant & this sadly can include the size and number or HCC tumours. They do all their own tests and then a multi-disciplinary team sits down to make their decision.

To have a live donor transplant you need to be listed in the usual fashion as surgeons will always prefer to have a cadaveric liver than a live donor having to go through the risky surgery too. Not everyone is suitable for a live donor as some people due to body size and conditon will require a complete liver rather than a small portion from someone else. The potential donor has to undergo a very rigorous assessment too which looks at their physical and mental health to ensure they know the full risks of what they are offering and to check that they are also well enough to undergo the procedure.

If you were placed on the list then obviously you need to be within easy reach of your transplant centre for when a suitable liver becomes available.

I am really not sure how your individual situation would pan out with you not being resident in the UK. I know we get occasional posters on here from Africa and many of them travel to India for transplant - obviously paid for privately.

Wishing you all the very best, Katie

[Njovu in reply to AyrshireK]

Thanks Katie - I am a full British citizen and not an immigrant or ancestor visa seeker! My grandfather (also South African side) fought in the last great war - mother bombed in the blitz so I feel I could be helped - have read so - however no means do I want to jump a list or to feel that I should receive any special status - no! I did try the India route - my children (resident in the UK and also full British citizens) are a match but are scared of India - was just thinking that the UK would make them feel more comfortable with risks etc ; SA doctors gave me 6 months to live 6 months ago - I had a serious scare last month with bleeding esophageal varices and had to be air evacuated to South Africa (I live in far north Mozambique) - lost 7 pints blood ; but liver is better than before - all counts down and some to normal AFP down to 304 from 1200 (had cyberknife treatment and am taking sorafenib (get in India for $200 for 3 months) and protein is still perfect But they say one tumour is strangling the hepatic portal vein - so am at the age of 49 about to push daisies and I still feel I have so much more to offer my children - sniff sniff!!

[AyrshireK in reply to Njovu]

I wasn't suggesting that you were trying to jump up the list or seek special treatment. I totally acknowledge that you are a British citizen, however, are you paying into UK Tax and National Insurance? - that is the question which will be asked if you are seeking to come to the UK for treatment. I am not an expert I just provided information on how you would be assessed if you were a UK resident, that may well be very different as you are currently living outside of the UK.

My husband nearly died due to a massive upper GI bleed so know how scary it is, we also went through the transplant assessment procedure in Scotland and hubby was on the list for 10 months before being delisted as his blood results came into normal range which took him outwith t/p criteria.

I do know there are strict guidelines on sizes of tumours and transplant. BUT I would suggest you contact one of the transplant centres direct to see if there is any possibility of treatment in the UK.

Just as an aside ....... I take it your children have been tested for haemochromatosis themselves as it is a genetic condition and frequently passed down through families.

Wishing you all the luck in the world.

Katie

[Mama41]

Any chance you can move back to the U.K.? As a British citizen they probably aren't going to deny you medical care.

I've heard of an American who came here and had a liver transplant (on the NHS).

Best wishes to you. I hope you can get the treatment you need.

[RodeoJoe in reply to Mama41]

Agreed, your best chance is to move back to the UK. In fact I think it's your only chance. There's no way I can imagine they would put you on any transplant list if you are resident in another country.

[Njovu in reply to RodeoJoe]

Thanks - cannot do that as have work here (none in the UK in my profession) - why become a burden on other factors - I was born out of the UK in a commonwealth country with British parents - hence the nationality since Birth

[Hidden]

Hi,

Welcome to the forum.

It is usual practice that British citizens should be resident in the UK and have at least 6 months of payment proof for countil tax/ National insutrance etc. However, we would urge you to seek out clarity regarding this for yourself as well. It may be that you can get information as a British National from The British Embassy in Mozambique, I have found the link to them on yougov;

gov.uk/government/world/org...

Of course, there are also the medical considerations you will need to look at such as your speciaist assessing you medically fit to travel, and also the assessements for transplant to be able to join the list.

As Katie has already kindly said, we do hold a list of all UK transplant and liver centres, here is the link;

britishlivertrust.org.uk/li...

It may be useful if your liver specialist liased with a transplant unit here to investigate matters in more detail for you?

We do hope that is helpful and wish you loads of luck,

Kind Regards,

Rebecca

[Njovu in reply to Hidden]

thank you!!