Wondering if anyone can give me any information. My 21 year old daughter with AIH has had a transplant 5 years ago through negligence which I won't go into it's a real long story. Seeing as she was misdiagnosed the need for transplant was an emergency which in turn caused mental health issues. We have fough to get help with the mental health but had to eventually go private. Now her liver is again in serious condition and she needs a new transplant but is only being offered palliative care as her mental health issues deem her not eligible. I can understand this bit if it weren't for the negligence there would be no mental health issues and even though now by getting the right psychological help she is in a much better place only now to be given a death sentence. I feel helpless is there anywhere I can turn to try and fight this?
Help: Wondering if anyone can give me... - British Liver Trust
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So sorry to hear your story. Every transplant center has its regulation regarding policy of health status to be able to perform the procedure. The only advice maybe try to contact other centers in UK with your history and ask them if they can do it? But I am afraid there are some country's regulations and the answer will be the same. Other country then? But it is about cost.
I am phoning Leeds and London today to see if there is any chance we can go private and see what costs would be if we have a potential live donor just not sure if it's an option but worth a try
Try India. Seriously. If not, Turkey is a very viable option (it's just twice as expensive as India). Do not be fooled by stereotypes, India has a lot to teach the west about liver treatment.
Google "Living Donor Liver Transplant India" (and then Turkey) and you will find dozens of links.
After finding out today the costs to have it done privately here I had started looking up a place in Istanbul I hadn't thought about India though will definitely look it up thank you.
The only question is who professionally will take care of her (I mean, as a doctor) when she comes back? Will doctors here say "sorry, I'm not dealing with her, not my problem she had a transplant abroad". I have read that is NOT a problem in the UK and Ireland (Doctors simply aren't that big of jerks) but you have to make sure. So relax, I think this is doable, but just make sure.
Fortis Hospital does a living donor transplant each day on average (five a week). The director says after 15-20 years 65-70 percent of his patients are "hale and hearty". He even talks about how a woman can have a baby a year after transplant in the video below. And this is a several year old video, I am sure the numbers are even better now with better medicine's and more experience.
I have no ties to this institution this is just one suggestion because it's a good overview to get things started. Google will give you 20 other options and they may be even better for your situation. Good luck!
Somehow I can't get it to link, find the youtube video of Doctor Vivkh Vij, Fortis Memorial Research Institute "Life After Liver Transplant". It's not linking for me, sorry.
Thank you for the information and help I appreciate it, the costs is astronomical here in the UK so I think the only option would be to try abroad. I am currently sending emails to an mp an msp and the health secretary just to see if it will make a difference as no matter where its done the only option after a no from the nhs is to fundraise which I am absolutely willing to try. I will look that video up too thank you.
gofundme.com/en-gb/c/blog/g...
All that having been said, please realize the people abroad are not miracle workers. It may be that in this case that what your daughter sadly has is beyond what any doctor - in the UK or India or Turkey can do. I understand your desire to fight on and you should do that. But please realize after speaking to the doctors overseas they may say "it looks like we cannot help your daughter here either...".
Now I don't want to get your hopes down (how can I know what they will say?), just remember now is not a time to get too down ("my daughter is definitely going to die really soon") nor too up ("those doctors in other countries can perform miracles"). Just take a breath and take it all step by step and realize the options, after all that is what you requested in your first post in this thread.
This really would be a time for you to call the British Liver Trust Nurse Helpline. They are the experts, I most certainly am not. I wish you nothing but the best. Good luck!
Hi,
We are sorry to read what a stressful situation your daughter and family are going through.
You are welcome to call the British Liver Trust nurse helpline on Monday for a chat 0800 652 7330 10am to 3pm.
Here is a link that may be useful to read that explains the complaint procedure in the NHS
I’m so sorry to hear what your family is going through. I don’t know much about transplants but a palliative care referral can be a positive thing. Palliative care can help patients and family live a good life for as long as they’ve got. It can operate in parallel to transplant investigations. Don’t feel that it has to be either or. Take all the help you get offered, what you’re going through is really tough, and accepting palliative care doesn’t mean you’re giving up on your daughters life.
I'm absolutely grateful for the palliative care team they are getting her pain under control and that has been a big issue before they came so I do appreciate they are there for good. I'm just finding it difficult that this is a decision the nhs can make ie not allowing her the chance of another transplant knowing the full back story. This isn't choices she is making. I am going to do what every parent would do and fight this as far as I can. Thank you for your words I appreciate any help right now even if it is some caring words.
I’m glad you’re getting support and wish it could be the support you really want from a transplant team. You’re going through the hardest thing a parent will ever face. I haven’t been through it myself so I can only imagine how awful it must be. Sending you love and strength
what a heartbreaking story, I am so sorry for everything your family has gone through and in particular your daughter who has had a really hard time by the sounds of it. I hope you manage to find a way forward to give you some hope
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