age for getting assessed

[Herbysherby]

I’m 76 and just been told by Leeds that I am too old for a transplant ! Really are they allowed to say this so I’m am just on the road to death..

[AyrshireK]

Unfortunately advanced age is seen as what they call a 'relative contraindication' to transplant because with age often comes other issues which make the operation more risky and possibly because survival time post operation is less than that of a younger recipient.

The BLT has a page about the new transplant listing, liver allocation system and talk of the 'Transplant Benefit Score' which outlines criteria. britishlivertrust.org.uk/ne...

Have you actually been assessed or was this a refusal to even put you forward for assessment? If you are otherwise fit and well, active, well nourished, no heart or lung issues then you might be able to seek a second opinion from another transplant centre.

[Herbysherby in reply to AyrshireK]

Won’t even assess me, I’ve been in hospital 5 times since Christmas all symptoms with liver failing, jaundice, coughing up coffee grounds etc last 2 occasions passed out with no notice for hours … but nothing showing on CT scan can only think toxins going to brain, did read that eventually will end in a coma then never come round. My daughter knows of 2 gentlemen my age who have alcoholic liver failure both had transplants? Just recently so why am I being held back? My standard of life is sat at home feeling lousy all day and sleeping !

[AyrshireK in reply to Herbysherby]

I take it you are under St. James's Hospital in Leeds? Do you have any other health concerns or is it all liver? What was the cause of your liver ill health if you don't mind me asking? You could potentially seek a 2nd opinion from another centre but may well sadly meet the same response. Queen Elizabeth Birmingham and Freeman, Newcastle would be your next closest transplant centres. You can but ask but sadly that survivability score will come into play.

My hubby was on transplant list but delisted in 2015 as his condition stabilized and he tries to make the most of any good days. He is on treatment for the toxin build up (Hepatic Encephalopathy) and has had all his varices banded to prevent further bleeds.

Are you on treatment for HE? Lactulose and Rifaximin ?

Sometimes transplant doesn't provide that golden ticket to a life improved, it's a life saving operation only and they can't guarantee that having a transplant will actually improve quality of life. My hubby is now 62 and has been poorly and living an 'existence' rather than full life for the past 11 years now. BUT he pushes himself to live the best life he can even with the condition.

Katie

[Herbysherby in reply to AyrshireK]

I’m at harrogate who told my daughter that they don’t do transplant, so that’s why I have been searching for answers, to be assessed. No other health complaints never drunk or had a bad diet. My daughter since has found she has liver hemangioma would I have given this to her as they are growing !The first time in hospital it said I would only have about 12 months to live done 6 months spent most of the time in hospital. Thank you for replying yes on Rif and Lactose, my daughter is really trying also doing caster oil compresses milk thistle lemon water! etc to see if we can make a difference, sorry to hear about your husband it’s lousy know how he feels, I don’t feel I have any enjoyment in my life

[AyrshireK in reply to Herbysherby]

You need to see if they will at least send you to St. James's in Leeds which IS a transplant unit. Only a transplant unit can say for sure if you are unsuitable to go forward for assessment/transplant listing.

Have they identified the cause of your condition? Knowing this is key to helping keep your liver going. My hubby is t-total and his condition is due to auto immune liver disease.

As regards your daughter having haemangioma - these are benign clusters of blood vessels and unless your liver condition is genetic in nature it's unlikely this is something which is linked to your own condition.

Katie

[NoRainCa in reply to AyrshireK]

Hi Katie, if your Husband has been living “poorly” than why do you keep pushing liver failure as a “manageable” lifestyle? Just a question.

[AyrshireK in reply to NoRainCa]

It is manageable in that we make the most of good days but in no way is it a full life as one would consider normal - unable to plan from one day to the next, often in bed before the kids in the street, unable to work, strugglung with cognitive functions (simple instructions), unable to drive, fatigue, worry etc. BUT not at deaths door either so you make the most of good days, deal with the ups and downs and 'ride the roller coaster' that is life with cirrhosis.

Katie

[WayCas]

I am almost 72 in good health except history of liver cancer which has left my liver weak. I live in the US. My hepatologist told me research has shown live transplants have been successful in older patients even above the age of 80. However, there is little chance anyone over 70 will be offered a full liver transplant. Not much else to say.

[sophiaS1980 in reply to WayCas]

I am in USA, and they did a live transplant for a 78 yr old, and he is doing well so far, had it done 8 months ago.

[AyrshireK in reply to sophiaS1980]

Unfortunately in the UK this couldn't happen as any individual needs to be listed on a nationwide list for transplantation and surgeons will always prefer a cadaveric liver rather than putting a healthy individual through the donor procedure. Only once listed and only if someone is suitable for a live donor would that option be explored.

So, if someone isn't deemed suitable for transplant listing then the live option isn't there. Also, not everyone is actually suitable for a live liver transplant it depends on state of liver health, liver & body size as to whether a split liver can be offered.

When my hubby was assessed he was listed as suitable for all types of deceased donor, split liver and live transplantation.

[sophiaS1980 in reply to AyrshireK]

The 78 yr old got the liver from his son, they did a lot of test before transplanting him to make sure he was suitable. I hope he does well after going through such a long process.

[AyrshireK in reply to sophiaS1980]

My hubby had his transplant assessment in 2014 but was delisted 10 months later as his condition stabilized so isn't currently awaiting transplant.

Any live donor in the UK also has to go through a major assessment of health BUT there can be big risks to live donors hence why surgeons do prefer cadaveric donors.

Still, the patient requiring transplant has to be assessed and listed for cadaveric donor, live transplant isn't a bypass to this system.

Katie

[sophiaS1980 in reply to AyrshireK]

I hope your husband is doing as well as he can with this condition, and believe it or not everyone thinks transplant is the way to a quality life but there is a lot of downfalls to transplant, it is best to keep your liver as long as you can. The poor 78 yr old that i spoke of had a rare liver condition and this was his 2nd transplant due to his body rejecting the liver , they felt live would be best for him . There are some transplant hospital will do transplant past 70 but you have to be in excellent condition. Good luck

[Rshc]

My understanding is that there is no hard line in the sand in terms of a cut off these days but that 70 is considered at the top end of what will be considered. You should definitely push for an assessment though

[Bikafella]

I've actual been through this myself in the last 10 months so can speak with some personal experience and not just an opinion. I'm 71 and can honestly tell you that I'm exceptionally fit for my age. I have lived a very clean and exercised life. My transplant (PSC)was in 2017 and I was a perfect candidate as had no other co-morbidities. I aced all the assessment tests. Roll on five years and my itching was getting quite severe so I was told because of my general health I COULD be a candidate for another transplant but I needed another assessment as I was over 70 which is the Royal Free's cut-off for average patients. I needed a full heart check and despite me running regularly with excellent cardio fitness they found an issue with a heart valve which is quite common with older people irrespective of fitness. As a result I could not be considered for repeat. They don't want any possible risk of problems during the arduous long operation. I am completely asymptomatic for the valve issue (no chest pain or shortness of breath after heavy exercise) I was told many asymptomatic people die with this issue but not because of it. Also, I was told without this issue I would be very low on the waiting list as preference is always given to younger patients. By the time I'd be nearer the top of the list, I'd be that much older and less likely to be a candidate. They are confident that my itching can be controlled with meds and other interventions. The fact is if you're not fully fit you may be rejected even if under 70 so at 76 you could not unfortunately be a transplant candidate under almost any circumstances.

[user2021a]

In reality there aren’t enough livers available for transplant and everything is done to ensure a scarce resource is given to those who will be most likely to have a successful transplant, who are most in need of transplant and who are most likely to have a long life post transplant. If there were an infinite number of livers available then age would be less of a consideration.

[Lindc]

I am 77 and was diagnosed 5 years ago. I have lived well since, compensated and with no signs or symptoms of cirrhosis. I have always been of the opinion than I would not go for transplant even if offered as I believe scarce donated livers should be for younger people than me.