Liver Transplant

[Joannakat]

Does anyone know if the NHS say they can't give my husband a liver transplant. Would a private hospital refuse him one. Does anyone know how much it would be. Had anyone had the same problem

[Chelle_]

What's the reason for them refusing transplant?

[Joannakat in reply to Chelle_]

They say it might re infect the new liver

[Chelle_ in reply to Joannakat]

What's the 'it' does he have cancer? has it been confirmed? I'm sure I read if the tumours are over 5cm they wont operate as it can be too dangerous? x

[AyrshireK]

Hi Joannakat, very sorry to hear of your husbands situation. Sadly when a liver cancer tumour is too large (or there are too many) they won't transplant due to the very, very high risk of seeding the tumour and spreading it all around the body - sad as it is, they would be giving him a 'new' liver whilst highly likely sending cancer cells to the rest of his system.

There is no private liver transplantation system in the UK, all have to go through the NHS organ transplantation system.

I know they've also said that resection and embolisation are impossible too and I assume this is because the tumour is too close to major vessels and is therefore too risky.

Is hubby being seen at one of the UK main liver centres? If he isn't it might be worth asking for referral and second opinion but you may need to be prepared that sadly no intervention is possible.

So, very sorry that this might be the case.

Katie x

[susieanna in reply to AyrshireK]

Didn't George Best go private?

[AyrshireK in reply to susieanna]

He had his in 2002 (he still waited 8 months for it) and there was a massive controversy over private transplants after that including several who were carrying out private transplants for foreign patients - although if you look on the Royal Free Hospital and London Bridge Hospital websites it still looks like they are available privately ( royalfreeprivatepatients.co... ) . I did once read somewhere that private overseas patients can only receive organs that are considered not useable by any NHS waiting list patient though I very much have my doubts. We had a lady posting here a while ago who was pursuing the private route though was turned down by their BUPA policy. The issue raised it's head again around 2011 when it was revealed EU nationals & foreigners were paying between £500,000 to £100,00,00 for transplants. dailymail.co.uk/health/arti...

[RodeoJoe in reply to AyrshireK]

Yes I once asked a consultant how it worked and he said that UK is divided into areas. When a liver becomes available it will got to the patient in the most need within the UK. If there are no takers within the UK it is offered to participating European countries. Failing that the liver can be offered to a private foreign patient. I imagine the checks and processes in place would make any misuse very unlikely.

Be careful what you read in the daily mail.

[RodeoJoe in reply to RodeoJoe]

Just read the article and it backs up what I said, although it also says that EU citizens living in the UK will get surgery as if they were a UK citizen. In other words they are prioritised with UK citizens. I can only imagine this is how it works in all other EU countries to.

It also says "The Non-EU patients paid for transplants of livers that did not meet the quality standards set for NHS patients."

Again be careful what you read in the Mail as they will ALWAYS put a anti foreigner spin on things.

[RodeoJoe in reply to susieanna]

I think I read that at the time. But I just don't think it's possible. I actually had private health insurance but only used it for a couple of things during my years of consultations and treatment. When I was first diagnosed I had private consultations, it wasn't long before I realised that they were the same only the waiting room was posher and had tea and coffee. I soon went to 'normal' consultations as I actually found it more convenient.

When I became really ill and was transferred to Kings Hospital for a transplant assessment. I was already in my local hospital and to transfer needed to be put in a private ward as the liver wards were already full. I think they said that probably speeded things up by about 10 days.

Whist there I did ask about going private, and was told that for obvious reasons you can't go private for the transplant and surgery, and when recovering they suggested being in the liver ward where the liver consultants and nurses were on hand.

[Hidden]

Hello Joan, this must be a very frustrating time for you, and I understand how you must feel about the transplant assessment rules. These rules are there for a reason, and are not made by the NHS. However, both the NHS and the private sector must abide by these.

Early this year I posted up my website about Alcohol-related Liver Disease. Liver related issues that require a transplant aren't just alcohol related. I have included on this site a section on Liver transplantation, and I go through the assessment rules. This can be viewed at: taep.eu/clients.htm

I totally understand your frustration, and realise just how hard this time must be for you. I hope this information is of use to you.

Good Luck.

[Hidden]

Joanna

I am truly sad to read about your situation.

I am sure you will have total support from all on here. But I believe that you would benefit from also contacting macmillan and seeing what they may be able to suggest.

[Chelle_]

I think you both need to sit down with your doctor and get everything confirmed, they only think it might be cancer at this stage from what you mentioned in a previous post. I was told the same 4 years ago. I have liver cirrhosis, Portal vein thrombosis and have 18 tumours on my liver non cancerous at the moment, I was informed when I was first diagnosed that they were cancerous. However this isn't the case. I have been on the transplant list now for 12 months!! I wish you lots of luck!

[dckimberly]

There are certain criteria that must be met, personal or public in order to get a tx. This must be the case in order to create a level playing field.

I will say this. I aman American and was told I was not a good candidate for the list.

I moved here to be with my partner at the end.

The tx team. At Addenbrookes Hospitol tested me, in spite of me explaining what the US doctors had said. I was only seeking continuing palliative medication. Dr. Allison said, we'll see about that. I barely had time to get used to being on the list and then I was getting a tx. Alas, my new liver is failing, not because of me rejecting it. So I'm waiting again, for tow organs.

Even more interesting is that two weeks ago my daughter got a call from my ex, her estranged father. He has what I had, hepatic cirrhosis. He can not get the new Hep C drug. It's $90,000 and he can't afford it.

They have given him a year to live. He cannot stay sober and therefore is not eligible.

My poor kids! Both of us. I would not believe it if it was happening to someone else.

I say all this because there is criteria in place for a reason.

Trust me, it's hard to wait. My quality of life is quite poor and there are days I don't want wait or be on the list.

All of us are very sick or dying on that list.

So many of us.

The wait in the US can be over 4 years.

I'm very sorry for you, truly.

I know it's hard to accept, I had too in the US when I was diagnosed with the trifecta of cirrhosis, hepatic, alcoholic and fatter liver.i was sober 3.5 years when I got sick. It broke my children's heart. And my partner.

But I did accept it.

And I may not survive this time.

But I am grateful.

For England the NHS and everyday I have survived past the Americans sell by date.

Take each day as you can.

Be blessed,

Kimberly

[Cariad64]

Sorry to hear of your situation and hope it all does work out for you. I do suggest you at least get a private consultation with kings college hospital in London.. they are the best and most experienced consultants in UK, Europe and America. It is so worth getting another opinion.

I had a liver resection there privately as my local hospital on nhs refused due to "being too dangerous "

I had a benign tumour that was size of a melon.. if I had left it I would have had huge problems later on.

I wish you and your husband all the very best.

[Hidden in reply to Cariad64]

Hi

Just to say I'm thinking of you both. It must be so hard. Please take care. Lots of love Lynne xxxx