Does anyone know the average waiting time on high priority liver transplants?

[Alicja_mb]

I have tried to Google but only get the average time?

[Jahida]

Super urgent list?

[Jahida]

I was on it from Friday I think and Monday I had my surgery. They cannot always guarantee of course but they say usually takes about a few days if you have a common blood group.

Have they put you on the super urgent listing?

[Alicja_mb in reply to Jahida]

I'm still awaiting the doctors to arrange my assessments but they said it would be likely high priority if I pass I don't think thats super urgent?

Main reason is my abcess is not responding to antibiotics (5 weeks now) and getting worse. Apparently antibiotics cannot go into the liver so only a small dose reaches it.

Strange thing is in a normal person they can have them drained. But due to my avms It would be fatal so it is much safer for me to have a transplant.

I think I'm in the second most common blood group

Glad you were treated so quick.

All doctors have different opinions. .. one said I'll be trained to do my own IVs through my pick line and sent home.

I really don't think this is good and when I'm discharged rashly I end up back in hospital days later even worse which keeps happening!

[retwos]

It's either priority or urgent unless you get super urgent n its goes of you ukeld score n blood group , depending on which group your in makes a difference to the time you will wait

[Jahida]

All I know is super urgent is the fastest list to be on and it all depends on your results. I was very close to death when they put me on. I literally had very little time. I am hoping someone can help you here regarding the listing procedure but please ask your consultant when you see him during the ward rounds. I am very confident that they will put you on the right listing hopefully.

[RodeoJoe]

There is no official answer to that question as it obviously depends on donors. However my personal experience was that I am blood group A and put on priotity list, and I waited 3 weeks.

I think the difference between the urgent and priority list is that urgent is used for acute, and priority chronic liver disease. Urgent or super urgent always "trumps" priority, and you can't go from priority to urgent.

[Jahida in reply to RodeoJoe]

Just wondering do they change the patients from priority to urgent if their blood results were really bad? For example, they had limited time? I always find it confusing.

[RodeoJoe in reply to Jahida]

My understanding is that doesn't happen.

[jimfearnley]

I would be cautious about trying to nail down this figure too precisely. Firstly, the rarity or otherwise of your blood group is a major determining factor. Also, one can't predict whether, when or how often extremely urgent cases might jump the list, eg, certain types of overdose, just-diagnosed late-stage liver cancer, etc. Your consultant may or may not be prepared to provide a ballpark figure.

[AyrshireK]

Remember Alicya you are a totally unique case - UKELD is unlikely to come into play because of your HHT you are requiring a transplant for a totally different reason than most of the forum pre-transplant patients. Trust in the medics and they'll put you on the list they feel you need to be on & fingers crossed you will get your TP in good time.

Thoughts with you and wishing you all the very best.

Katie xx

[susieanna]

'A few days'...i thought it was alot longer; i can only presume it all depends and many factors come into it. Hopefully, your wait wont be long.

[Raksha1964]

I was on super urgent as only had 48hrs. Was lucky with just hours to spare family got the call to sat was on way to theatre

[Alicja_mb]

So to keep everyone updated.. it looks like a massive nose dive. I was not actually aware that in October last year when my liver failed my heart failed also. It was certainly never mentioned and no heart doctors saw me post c section. Anyway doctors are refusing to transplant as risk i would not survive the op. The other option is drainage of my abscess but it is surrounded by AVMs at first they said risk too high as likely to bleed to death. My abscess is growing rapidly so risk of going septic. I'm on 4 antibiotics which I haven't responded to and near ended up in ICU last night. Now they want to risk drainage as only option to possibly save my life but even that could kill me.

[Bolly]

I can't begin to imagine how you are feeling but just wanted to post a reply so you know we are here, reading your story, sending you cyber hugs through the Internet ((0)) xx

[AyrshireK]

Sorry to hear that Alicja - hoping they can do something for you. Can only send big cyber hugs and our prayers your way.

Did you not at one point think they may be considering a triple transplant with heart, lungs and liver? Is that not still an option? Just wondering because if your heart is goosed can they not replace it in a triple transplant. Hell of an op mind you.

I guess all avenues will be explored - The Freeman is one of the major heart transplant centres too.

Rooting for you Alicja.

Love and best wishes, Katie xxx

[Anne48]

Just as Bolly said, we are all thinking of you. XX

[Alicja_mb]

Thank you for your thoughts. I've only really just been referred here and they said they don't have enough time to assess me for transplants and a triple would take ages as well as waiting for a donor such a big op has to be approved by a higher board. Thr abscess is just growing too fast and the drainage is the only thing they can do to try save my life even if it has risks.

I'll keep you all updated if I can, I've stopped being upset about it.... just feel numb. Xx

[Hidden]

I was end stage liver disease and 18 hrs after being excepted on to the transplant list, in group priority I received my transplant blood group A July 2015 . I think it all depends also if anyone else in your catogary is called in as well !! I had the new liver transplant procedure , thormadermick regional perfusion .

[Jahida]

Any update? Hoping you're OK