Transplant assessment at the Royal Free

[Rshc]

My partner is due to go for 2 day transplant assessment at the RF at the start of Aug. Cirrhosis due to alcohol - detoxed and remained alcohol free at first presentation of symptoms over 6 months now, engaging with external support and alcohol nurse.

He has had a lot of tests done at our local liver unit but of course we are still very scared. He has a minor heart issue that may need further investigation (stress echo-cardiogram) but they are currently saying IF this is a concern it is treatable/can be managed. What might be a reason he would be refused to be listed other than he is too well currently. Oh and any general assessment tips or thoughts on the Royal Free most welcomed. Thank you

[Richard-Allen]

They will need to be reassured that his alcohol issues are not behind him and be willing to commit to a life of total alcohol abstinence. This also includes the use of Non-alcohol, beers, wines and spirits.

Alcohol abuse is seen as being a mental condition and the assessment panel needs to be convinced that your partner is worthy and that there is little or no chance of relapsing. The continued use of non-alcohol drinks is considered to be too much of a risk and so your partner may be deemed an unsuitable candidate for transplant. This could be reviewed again in a further six months.

They may also need to be sure that he is willing to sign a contract stating that he will never knowingly consume alcohol ever again. If this contract was ever broken, they may refuse to treat him or his liver if it became damaged in the future.

This is a very worrying time and you are both sharing this journey together.

Those people who stand by and support their loved ones are true heroes. You have been through so much already as people with an alcohol problem can be hard to live with. So, well done to you, Rshc.

Good luck to you both.

Richard

[Rshc in reply to Richard-Allen]

thank you for your reply. Yes for the past 6+ months he hasnt had so much as mouth wash with alcohol in it and certainly no 'non-alcoholic' alternatives.

[AyrshireK]

The assessment will see if he is at the stage where transplant is now the necessary treatment option - they will thoroughly assess his liver health and obviously explore his alcohol history has Richard has discussed. There is often social worker input to ensure the patient has appropriate support in place etc.

They will also assess his overall fitness - dietary status - has he enough reserves to get through surgery and recovery (my hubby was put on special diet plan to build him up as he was too thin at t/p assessment).

They'll check that heart issue but this is normal for all assessments they do full heart stress test on either treadmill or exercise bike. Also, a breathing/lung health assessment is done. Anaesthetist is the person who can make or break t/p listing i.e. is the patient fit enough to get through the procedure.

They normally do a CT or MRI scan at assessment to make sure there are no other issues that arn't known about i.e. cancers outside the liver etc. (In my hubbies case this was when they found out he had aneurysm's in his splenic artery and he needed an emergency operation to sort those). Cancer outside the liver is a contraindication to transplant and any in the liver has to be within set criteria too (certain number/sizes of tumours can mean no transplant).

Transplant assessment is the best full body MOT someone can have and they'll try their hardest to rectify any issue that might prevent listing and get them ready for it.

I can't comment on the particular set up at the Royal Free as my hubby was assessed in Edinburgh.

Best wishes with it all though.

Katie

[BritishLiverTrust3 Administrator British Liver Trust]

Dear Rshc,

We facilitate a range of virtual support groups for people living with a liver condition (and their families and carers).

If you would find it helpful to speak to others with shared experience, you can register to join a group here

britishlivertrust.org.uk/vi...

Best wishes

British Liver Trust

[Loobylou72]

Hi , I am on transplant list at Royal Free due to Budd Chiarri and a blocked TIPS, so my only option is transplant. The team are great and spend time answering all your concerns, alongside testing you. My tests covered everything from CT, Bone Density, Endoscopy and Heart echo screening to testing my current fitness levels with some cardio and strength tests. Also saw dietician, physio, anaesthetists, hepatology team, surgeon and transplant coordinators. There is a lot of time sitting doing nothing as transplant team see you when they are free between other ward visits etc. I have been waiting nine months now, with one call-up but the liver wasn’t viable. Coordinators are always around if you have questions and I have hospital appointments every 5-6 weeks to meet the Team and continue being monitored. They offer a psychologist if you feel you need to chat about issues , which I found useful . Also , worth signing up to British Liver Trust zoom calls for pre and post transplant patients. Good to hear positive stories, but also hear from others who are waiting : it makes the process feel less daunting . Good luck.

[Rshc in reply to Loobylou72]

thanks for your advice, I hope you get your call soon.