Hi everyone hope you all had a merry Christmas and didn’t eat to much puddings !!!! I’m just wondering on time factors of transplants . Please could you tell me how long you have been waiting for your transplant . Or how long before u had it done . Just been nosey XX
Many thanks 🙏🏾
Debbie x
I was listed and transplanted exactly two weeks later.
My friend who had his transplant two days ago waited for three weeks.
Omg that’s so quick hope u keeping well xxx
Hi Debbie
There are so many factors at play but your transplant team should be able to give you an estimate. Usually the wait seems to vary from a few weeks to several months.
I was initially told my wait would likely be 4-6 months but I had the first call in 10 days. The transplant actually happened on the fourth call in 5 weeks altogether.
All the best
Klodian
From listing to transplant for me was 6 weeks.
It looks like Jim, Klodian and myself all seem to have been quite quick recipients. However, if you want a bit more of a representative view, from a better and more realistic sample size, then click on the link below.
nhsbtdbe.blob.core.windows....
This takes you to an extract from the NHS's annual activity report for 2017 relating to Liver transplant activity. Fig 8.2 and table 8.4, both on page 80 (or page 6 of the extract that opens), highlights waiting times.
Fig 8.2 suggest the 51% of patients listed received a transplant within 6 months, 67% within 12 months and 74% within 2 years. Table 8.4 gives the median wait time in the same period broken down by blood type.
There are of course many factors that can affect an individuals wait time. But, the info attached may at least serve as a bit of a guide to what has happened in the past.
Thanks you will give it a read x
The wait depends on how poorly you are become... I was listed in February 2016 and felt relatively well at the time 2 months later I was in hospital once or twice a week and in July I was admitted and didn't come home until November after I had my transplant in October... It can be days, weeks, months or years it's all based on individuals 🙂
my husband waited 9 weeks
His blood group 'a pos' can also take an 'o 'so had better chance even though not on urgent list
When my hubby was listed at Edinburgh we were told there were people waiting 2 years and still no closer to getting a t/p (not poorly enough to be rising up the list). My hubby was listed 10 months but delisted eventually because he was no longer poorly enough and it was a waste of time being listed.
It all depends on blood group, body size, type of organ required or able to be received (full, split, brain deceased donor or suitable for cardiac deceased donor).
The most poorly will always be highest priority - there are no additional points for 'waiting time' & inded we've members on here who have been waiting year plus who are obviously not as poorly as others and so are lower down their given lists.
How long is a piece of string is sadly the answer? But trust the medics, when the patient is real need they will be the first number called.
Best wishes
Katie
Katie how come your hubby not on list anymore then ? X
Because to be on the list you need to score a minimum of 49 on the UKELD scale (United Kingdom Model for End Stage Liver Disease). This 'score' is calculated based on various aspects from blood tests - INR (blood clotting time), Serum Creatine, Serum Sodium and Serum Bilirubin.
Hubby was always 'borderline' but since the loss of his spleen his INR time, platelet count and other readings have improved meaning he no longer scores the sufficient UKELD score plus he managed to gain weight and muscle so he isn't at 'deaths door' and the loss of his spleen meant his portal hypertension has all but gone.
His symptoms are more life limiting than life threatening and they won't do a transplant on the off chance it will improve quality of life - because sometimes the fatigue and things don't go away post transplant.
Transplant is seen as a life saving operation and whilst hubby is still pretty 'well' in their eyes they won't risk his life for a very risky procedure that can't guarantee him any improvement and could potentially make things far worse or even potentially not work at all and not everyone comes out the other side so to speak. Risk at this time outweighs possible benefit.
He remains under the close watch of a local gastroenterologist and a specialist at Edinburgh so if a deterioration does happen we trust they will have him in for reassessment and hopefully relisting. Meanwhile we muddle on and hubby tries to live the best life he can though he gets very down and frustrated at times by the limitiations it puts on him.
Katie
Thank you for the reply ! Wishing your husband all the best and u too love xxxx
I waited 7 months it seemed like an age but if others have had it quicker fair play x
Omg so quick hope u keeping well x
Thank you everybody xxxxxx
First time writing
sad time 
Next Step 
Looking for some reassurance in my time of panic
