Hello all,I am desperately trying to get the surgeons to overturn their decision to not give my partner a liver transplant.
He has Autoimmune Hepatitis with the complication of Hepatopulmonary Syndrome and the only way to cure Hps is with transplantation but they refuse.
He had an assessment at the hospital 2 weeks ago where he was told, and I quote-
"The Anaesthetist is confident that he can get you off the table but it would most likely mean an extended stay in ITU so we're not going to be going ahead with the operation"
The surgeons were always aware that he would need an extended stay but yet they're still saying no.
He is only 43 yrs old with years ahead of him still if only I can get them to reconsider.
Am I able to approach other liver units to ask them to consider him as the hospital are refusing to help?
Any help or advice would be greatly appreciated.
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I do not know the procedure in the UK but as I understand they refuse because there is too much risk of the complications after it and outcome is not optimistic. So they would like to use donor liver for more better prognosis case. I think it is like that in most countries (but sometimes it is different and other criteria are taken into account).
That's unfortunately the reality. I am not sure what can be done in your partner's case. Maybe finding living liver donor (part of the liver) who woul like to donate it (for example family member knowing the risk?) Hard to say if it is possible. For example in Poland not but I know it can be done in the USA. Of course there is always issue of financing.
That is what I was going to say. Find a donor, (a sibling? parent? child?) to donate and since you are being told no here go abroad. You can google "travel abroad for liver transplant" as I don't want to be seen as recommending on doctorate or country over another.
This is important - I am NOT a doctor and traveling abroad DOES have its risks. It's expensive but not crazy priced or so I have been told.
I would contact the Cleveland Center or the Mayo clinic these are nationally recognized liver transplant center and may consider the complication and provide a extended stay at their facility.
Yes, according to the NHS website, you are entitled to ask for a second opinion from another transplant team or centre. I'm not entirely sure of the process but do discuss this with his medical team and I am sure they will be happy to arrange.
I'm sure 2nd opinions are welcomed by any good professional team. They don't come to these decisions lightly.My husband has just been taken off the list due to the fact he's now been stable for some time. They are still seeing him, as they're confident that it's a question of when he will need the transplant. Likewise he is only 43, and although he is stable, his bloods are still poor, still decompensated and daily life is often a struggle. We are learning to adapt to living with long term illness, rather than hoping transplant will change things - it's tough on the kids - teens like yours.
I do think Dr's have a duty of care to do no harm, and they've always been Frank with us about how it is a life saving, risky surgery - and they talk of whether the benefits outweighing the risks. We had 3 calls for transplant while he was on the list, none of them worked out - but I remind myself that at least I still have him today....even if he's in bed - and try to face whatever tomorrow might bring when it comes.
Take care of yourself, and don't give up fighting for him
I would not accept the decision from surgeon/consultant. Your hubby clearly needs a transplant and for using such a pathetic excuse is beyond me. They don't transplant his health will not improve I would ask for a second opinion. My transplant 4years ago was difficult and I spent xtra 2days in icu due to complications,however if I hadn't received the new liver I would not be writing this message to you. Stay strong for both of you and feel free to ask me anything
I would like to add that in August he had an assessment done and they then suspended his place on the list and didn't tell us. We found out by accident when I called for an update a month later.
My dear... definitelly for for a second opinion to another hospital!!! My husband had HPS. Trasplant saved his life. He was on oxygen before the surgery. He had his transplant in May this year. His lung collapsed three days after the surgery and he was kept in ITU for two months. He is at home now, healthy and happy. Go to another hospital. You have every right to do so. Especially that your partner is so young. My husband is 54 and it definitely saved his life.
I would push for a second opinion, obviously in London you have the Royal Free which is also a transplant unit but I wonder if the Freeman in Newcastle would look at him. I know that would be a hell of a long trek BUT the Freeman is the expert hospital for multi visceral transplant and is probably set up for more extended hospital stays.
Have they explained WHY they feel he'll probably need longer in ICU?
The Freeman may be an appropriate team to look at him as they are lung experts too.
I personally know of a chap who had double lung transplant at the Freeman less than a month ago (having travelled down from Ayrshire) - he is due out & home next week.
Can't understand unless hubby is very, very frail and too unwell for transplant why they wouldn't be putting him forward especially if he's previously been on the list.
I wish you both all the best of luck in the world, 43 is no age and especially when his condition wasn't in any way a lifestyle related issue.
Ahh sorry to hear that as I couldn't see which hospital was involved. I still agree that a second opinion would be helpful but obviously in a different hospital.
I am sorry this decision has been made. I think asking for a further explanation to understand their decision is important and what needs to change to be on the list again and then make a plan. I would also speak to the British liver trust for consultation to come to terms with the decision process as emotionally overwhelming for you all. Xx
Hi,I don't have any advice to offer, but was very moved by your situation.......
It sounds very scary and I'm really shocked by the experience you're having.
Without any knowledge of how all this works (ie. Hospital procedures etc) the answers you have been given seem harsh and dismissive, especially considering your husband is only in his 40's!!!
I just want to say I hope things go better moving forward. I was (and have been previously) so impressed with the knowledge of many members of this group. This is the perfect place for information from people who have had experience of such things. A rich resource you wouldn't find elsewhere. So you don't have to reinvent the wheel...... the British Liver Trust helpline is amazing too!
Wishing you both all the VERY BEST, and hoping for the VERY BEST outcome.
Hope you feel this Group is helpful (they have been for me!) and that you can come back at anytime.
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