I took my brother to his hepatology appt this morning (he has hepatopulmonary syndrome as a result of his liver disease). The registrar was great and gave us an overview of all the LT considerations and my brother stared at the floor quite disinterested-he won’t read up on it and would rather not know the ins and outs and told me he wasn’t listening. Says he doesn’t want it but will go along with assessment ‘in case he changes his mind’. They are starting the tests in a few weeks. He is very down on life(no drink or drugs for years) and I’m not sure he has the emotional strength for the roller coaster-but am I right in thinking you need to commit mentally? Sorry, this seems such a banal question but I feel like I’m supposed to make all his decisions! Thank you so much.
Liver transplant ambivalence - British Liver Trust
Liver transplant ambivalence
Assessment should involve a social worker and also a psychologist input who assess mental/emotional side of things. At the end of the day it's your brothers choice to make but when someone is assessed as needing transplant then they really do need it since transplant is seen as the last chance saloon so to speak - it's a life saving operation only.
Assessment is really good, thorough full body MOT and hopefully by going through all the discussions that happen during assessment he'll be able to make an informed decision.
Katie
Thanks Katie. As he is currently on 8 litres per minute of oxygen due to hps he won’t be able to do some of the tests(lung function) but we discussed that today. I’m glad they screen beyond physical, so thanks for confirming. I guess his lack of buy-in would be covered in that.
During hubbies assessment his desire for t/p was discussed by everyone we met including the surgeons, anaesthetist, doctors, co-ordinator and more. Hubby didn't want to hear any of the 'gory details' but still wanted to have the chance to get his life back. HPS may make your brothers situation even more grave but transplant may provide his only chance at longer term survival, maybe when this is discussed in privacy with him he may be more willing to go forward.
Best wishes, Katie
Thanks Katie, that is so helpful - that seems to be his mindset re ‘gory details’. Ruthie
Would it help to talk to our nurse led helpline? or perhaps one of our online support groups? Our support groups have members who have had successful transplants and are very inspirational. Drop us an email at helpline@britishlivertrust.org.uk if needed.
Yes please, this is all so new and scary. I’m fine with brain tumours/neurosurgery as my partner was diagnosed in 2014 but this is a whole different ball game. I think it might really help my brother if I can get him engaged. Thank you,
Please do consider calling us. Here is the link to the details:
britishlivertrust.org.uk/in...
Thanks-I’ve done an email. Your advice is much appreciated.
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