Waiting times for liver transplant.

[Sophieatkinson]

Hi there, my husband has been on the Liver transplant waiting list for 9 months with a ukeld score that is currently 50, how long has it been for others before they got the call? He is an o blood type, live donor only.

Thanks

Sophie

[AyrshireK]

Hi Sophie, type O is the most common liver type which sadly means it has the longest waiting list. Ok there are likely to be more O donors too than some of the rarer groups but type O as the universal donor can also be given to other blood groups so folks waiting for an O can have a long wait.

UKELD of 50 is only just on the borderline for requiring transplant (unless liver cancer is an issue).

What symptoms is hubby experiencing? You only make your way to the top of the list when you are generally really poorly. As you'll no doubt have read on here we've had someone listed one day and transplanted the next whilst we've also had folks waiting for upwards of 2 years (it all totally depends on the severity of ill health and which waiting patient is most in need and who most matches any available donor liver).

When you say live donor, do you mean a split liver from a still living donor? or a brain deceased donor where the organ is still alive at the point of retrieval rather than a cardiac deceased donor where the organ comes from someone who's heart has actually ceased beating?

My hubby waited for 10 months for any type of O liver, however, ended up being delisted because his bloods actually improved and he no longer met the criteria for transplant. He was only every 'borderline' with no obvious liver symptoms (varices all eradicated, no varices, not jaundiced, only minor HE).

Katie

[Sophieatkinson in reply to AyrshireK]

Thanks for such a detailed helpful reply. Glad yr hysband is ok . Hubby was 64 on ukeld to start with.

He continues with bad ascites and weekly drains

. I meant BCD which is because his system esp kidneys gave taken a battering.

Soohie

[AyrshireK in reply to Sophieatkinson]

The diuretic resistant ascites should be making your hubby more of a priority. Fingers crossed his wait won't be too much longer. How often does he attend transplant clinic? Hopefully he is making his way up the list.

All the best to you both, Katie

[Sophieatkinson in reply to AyrshireK]

Hi Katie, andy was going every 3 weeks to the waiting clinic then 4 now for the first time 8 weeks.

Thanks again for all your help

[AyrshireK in reply to Sophieatkinson]

Do transplant coordinators and doctors at t/p unit know how frequently he is being drained of ascites? Diuretic resistant ascites is listed as one of the things that makes t/p more urgent. Make sure they know, because this will be affecting quality of life, increase risk of infection and more. Local hospitals don't necessarily keep t/p centre's fully informed.

[Sophieatkinson in reply to AyrshireK]

Thank you for your advice. Yes Andy got a super bug (VRE ) from a drain that meant he was off the list for 12 weeks last april

[Hidden]

I agree with Ayrshire, when my visit notes by the consultant had started putting comments in capitals did the transplant come. ( May be a coincidence)

I am O and needed a live liver transplant and I waited 14 months before the call, make sure the transplant team are aware of your husband symptoms, I was on 6 weekly visits on the waiting list.

I hope its very soon as the waiting is hard!

David

[Sophieatkinson in reply to Hidden]

Thanks David,

Yes waiting is exceptionally difficult. We both feel cooped up especially as we have winter ahead.

Thank you for your support . It sounds as if you are fully recovered now? I hope so.

Sophie

[Hidden in reply to Sophieatkinson]

Yes I am really well after my transplant 18 months ago

My heart goes out as i ember all to well

Your chance will come all of s sudden I wish I could think of the words to help but if you are as lucky as me the future is going to be good

I pray it now very soon

David

[Sophieatkinson in reply to Hidden]

Thank you