Transplant list

[6361]

Hi I am Kaylee. I was wondering what the survival rate if one is on a transplant list already?

[Hidden]

Kaylee,

The longer the wait, the higher the risk. If you are listed for transplant, your health is already deteriorating. Take all the advice and follow it. You will be carefully monitored, you have to be well enough to get through the operation. The best people to discuss concerns with are your liver team. Your blood group and frame are the determining factors. Stress and anxiety, although unavoidable, will make things worse.

Good luck,

Mark.

[AyrshireK]

The sole reason for being on the transplant list is that your liver is on it's way out and without transplant - which is considered a last chance treatment option when all others have been exhausted - then survival chances would be low.

How long can you wait, well it depends on how 'well' you still are. Livers will always be offered to those with the shortest life expectancy i.e. those whose symptoms are the worst.

Wait time depends on liver availability, level of need, blood type, organ size and donor type match.

Often those with rarer blood types actually find that their wait is shorter than those with the most common O blood type but at the end of the day any donor liver is always given to the most poorly person who matches the donated organ.

If you are on the list already I trust you are doing everything to look after yourself, eating well and trying to do exercise to keep yourself well enough for transplant when it comes.

My hubby was on the list for 10 months for a transplant but in the end he was delisted because during his wait he actually improved his health and stabilized enough to go back to the watch and wait stage. That was 3 years ago.

All the best, Katie

[Hidden]

Katie,

Can you give me the reasoning behind those of us, unfortunate to be in a rarer blood group ‘find their wait is shorter’? Less of us waiting, yes. I was top of the list for my group. But for clear reasons, there are even less donors. An agonising 19 month wait.

Mark

[AyrshireK in reply to Hidden]

Yours was a long wait for a rare blood type liver and if you read back Yuiop's post on Transplant Wait time (which you also responded to) you'll see there a lots of rarer blood type folk on there who were all transplanted within hours, days, weeks and under a year. In general their wait time is less because the list of 'waiters' is so low - ok donor numbers are also lower but they do seem to keep up with demand.

In your case although you were technically top of the list at your t/p centre (are you another Edinburgh one?) their must have been folks who became of higher priority who matched the given organs when they came in. The super urgent list throughout the UK always superseded the individual t/p centre lists. Plus you might just have been unlucky with the size and types of donor organs that became available during your wait. A match also depends on body size not only blood type.

I think one of the reasons behind the new organization of the UK transplant system (the UK wide allocation of donated organs) was to iron out the situation with rarer blood groups and wait times in general - widening the pool of donors for all centres.

For O livers the list is much longer therefore the demand for O donor livers is much higher and not only can an O liver go to O patients but also to those with the rarer blood types as a universal donor. When hubby was on the list at Edinburgh I think we were told there were 55 folks waiting and 50 of those were for O livers. Edinburgh only did 96 transplants that year but carried out 192 assessments so lots of O waiters were on the list for well over a year and more. We were told to settle in for a long wait - some other lass on the O list had been waiting for 2 1/2 years at that point. In the end after a 10 month wait hubby delisted because his health actually improved to the point he no longer qualified for listing.

Hopefully the new system has balanced out the allocation system and all future folks waiting don't have to go through the agonizing long wait that you and others have endured. Fortunately yours did eventually come in time, we've had forum members who sadly didn't last the wait or it came far too late in the end for a successful outcome.

For our part, hubby is back at the watch and wait stage, we were told by one of the surgeons at Edinburgh that it was a matter of when he'll need transplant rather than if so we try and keep him as healthy as possible. Sadly, we've got a little worry at the moment in that they found something on his latest ultrasound that they want to investigate further on an MRI scan. We've got our fingers crossed that it isn't something too scary.

Hope you recovery is still going good.

Katie

[Hidden in reply to AyrshireK]

Katie,

To keep you up to speed with type B blood, I recently had a meeting with a former Public Health Minister, I discussed various topics around Liver disease. She is painfully aware of the problem with type B blood, as well as not donating, the Afro-Caribbean and Asian communities, demand that the Government do more to make donor organs available. Due to the high salt levels in their diet, they suffer from high blood pressure and therefore kidney failure.

I was a priority listing and at the top, only an emergency would have been moved above that.

Mark.

[Hidden]

Thanks Katie,

The recovery is going well, the move from regional to national was probably a life saver. Under the old rules my donor organ would have gone to Birmingham, instead it came to me at the Royal Free.

The problem with type B blood is that although 9% of the population, the prevalence is in the Asian and Black communities. For cultural reasons, they donate neither blood or organs. The NHS and Government are well aware of this issue and there is currently a campaign to raise awareness within those communities, mostly kidneys but still the issue of organ transplants.

If we follow suit with Wales and Scotland, we should get the opt out clause. However, as you will be aware, the final say goes to the relatives. A departing number, 4 B liver transplants done in 2017, from what was explained to me. I had for the only time, broke down and threw my toys out of the pram.

My best wishes to you both, I hope that the diagnosis goes your way. It’s seriously hard.

Mark.

Mark

[AmericanDemocrat in reply to Hidden]

I cannot imagine waiting 19 months. SO glad you finally got a liver.