Transplant

[Gingerlad73]

I've been on the transplant last for 12 months with only 1 offer so far. This seems to me to be a very long wait, especially only having 1 offer. I'm still live on the list so not been forgotten and I go to the transplant clinic monthly. Just wondering what other people's experience is?

[AyrshireK]

A year isn't such a long wait (I hate to say) and it all depends on your symptoms and blood results as to where you place on the now nationwide waiting list - the most poorly person who most closely matches any donor liver will always get the first call.

We've had forum members who got the call and got as far as being under anaesthetic in theatre only to wake up and find out there had been someone more urgent than them and the donor liver intended for them had gone elsewhere - they did eventually get a transplant some time later.

How are you symptom wise? The fact you've been waiting a year kind of shows you haven't reached that point of no return. Your UKELD and Transplant Benefit Score will be updated each month after your clinic appointments. Keep looking after yourself, keep doing all that is necessary to keep going and your time will come - unless you improve so much that you get delisted (as happened to my hubby after 10 months waiting on t/p list).

Katie

[Porcupine_Tree]

17 months for me with a 56 UKELD.I have had AIH since 2004.Kept under control with meds. I have cirrhosis, an occluded portal vein, umbilical hernia.

I also have had episodes of Ascites and varices. I see my QE consultant tomorrow.My advice to combat waiting is speaking with others in a similar position.Join the BLT forums and speak with the BLT nurses who have a wealth of knowledge. Good luck 👍

[BritishLiverTrust1 Partner British Liver Trust in reply to Porcupine_Tree]

We also have a UK-wide Transplant Group that meets online. Anyone interested in joining can register here: britishlivertrust.org.uk/vi...

Best wishes

British Liver Trust

[taar]

I was on the list for 16m before getting my transplant, had one offer about 2 weeks in, but was told not to come before we had even left the house, then 16m later had an offer, went up to QE Birmingham, a two hour trip, had all the tests, but then when the surgeons had a look at the donor liver, said it wasn't suitable/good enough.

Went home, and a week later, got the call again...and here I am now, 11m post transplant. When its time, its time. Don't focus on the wait...they are just looking for the best organ for you. Good luck to you.

[Yellowsydney]

If you use Facebook please feel free to join our friendly and knowledgeable Facebook group called liver transplant support w, thousands of people that have been in your situation.I know in our group there are people that have been listed 4/5 years, so many factors are taken into account as to where you are in the list. I was in the list for 8 months and was told that if I had had to wait another 2 weeks I would have been inoperable and only had a couple of months to live.

Hope you don't have much longer to wait.

Hilary ❤