Worried and: Hello all. I am wondering... - British Liver Trust

British Liver Trust

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Worried and

Bazinga89 profile image
5 Replies

Hello all.

I am wondering what are criteria for liver transplant? I keep ask my doctor if I need this he keeps saying no. He told my damage of liver out of 10 is 8.5 so I think its big. Also he informed me that 25% of people with my disease could have reverse of damage and MAYBE I HAVE THAT LUCK THAT I'M ON THAT GROUP 😲

My point is that I don't want depend my life on luck as its not a lottery. I am worried becouse I'm 29yo and don't want hear that maybe I have 5 years of life.

Any suggestions? Anything I can do or stick to my doctor suggestion and wait for lucky?

Happy 2022 for all!

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Bazinga89 profile image
Bazinga89
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5 Replies
Zukosmile07 profile image
Zukosmile07

Hello... Do you have more information on your condition, there are all different stages of liver disease. Such as a fatty liver, which is reversible. I guarantee you will receive more help if you can give more information on the actual diagnosis.Things will get better, I can assure you that!

Danny x

Bazinga89 profile image
Bazinga89 in reply toZukosmile07

Hello. My doctor put my disease as advanced fatty liver disease.I have severe fibrosis with portal bridging.

AyrshireK profile image
AyrshireK in reply toBazinga89

In that case at this stage then no transplant is neither needed nor going to be an option, fatty liver disease and even the fibrosis is reversible with the alcohol free lifestyle, healthy diet, exercise and things you've been told by your doctor.

The BLT has a good page about fatty liver plus details of a recent study about the benefits of a Mediterranean Style Diet for treating fatty liver.

You can reverse this and hopefully negate ever needing a transplant altogether.

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/ea...

Katie

Zukosmile07 profile image
Zukosmile07 in reply toBazinga89

Listen to your doctor's advice and try not to think a transplant is the only option.If your liver becomes extremely cirrhotic and a transplant is the only option, the diet and healthy lifestyle is still the same or more extreme to be eligible for the procedure. In other words, it is better to catch it now and deal with the no alcohol and healthy diet/living. Try to make a decent or full recovery rather than have to do all those changes and still go through the traumatic stress of having a transplant.

Good luck Danny x

AyrshireK profile image
AyrshireK

Hi Bazinga,

I think you are in the UK and if so then there are strict criteria to meet before you can be listed for transplant.

From your earlier posts it doesn't look like you've had even a confirmed diagnosis yet unless i've missed that - contradictory scans etc.

Before transplant is considered all other treatment options will have had to have been explored and not worked and you need to be really quite poorly - i.e. you've reached the stage where your liver is struggling so much that if you weren't transplanted you would die. Transplant is seen as a life saving operation only.

There are no guarantees with transplant and they quote a figure that 5% of patients don't even make it off the operating table and even afterwards the pills you need to take etc. can actually make life a bit pants. Not everyone gets the happily ever after.

To get onto the UK liver transplant list you need to have a UKELD (United Kingdom Score for End Stage Liver Disease) of 49 or over - unless you have liver cancer when the UKELD score is negated as the cancer makes the patient more of a priority.

If you don't have too much in the way of symptoms from cirrhosis you are unlikely to get listed because the risk may outweigh the potential benefits.

There are 7 liver transplant centre's in the UK, all of whom carry out transplant assessment slightly differently as regards inpatient/outpatient but all assess both your need for transplant and your fitness to receive one. You need to be poorly enough to need t/p yet fit enough to undergo the procedure.

If you arn't already attending one of the transplant hospitals then it's at least worth touching base with one so you can ask for referral. I know that Edinburgh where my hubby goes they prefer to see people too early rather than too late.

Hubby has had diagnosed cirrhosis since 2012, was referred to Edinburgh in 2013 and was only assessed for t/p & listed in 2014 but he only spent 10 months on the list because his condition improved so much that he no longer met the criteria for transplant and is now back at the monitoring stage.

I don't recognise the 8.5 out of 10 score you've been given and don't know what scale that doctor is using there.

UKELD is the score used for transplant listing suitablity and it is a calculation based on various blood test results (INR or blood clotting time, Serum Creatine, Serum Bilirubin and Serum Sodium).

You can find out more about the liver transplant process at the BLT website :- britishlivertrust.org.uk/in...

Hope that all helps a bit, Katie

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