Hi again,
All you lovely people who are post transplant, can I ask how long you were on the waiting list please
Post transplant wait: Hi again, All you... - British Liver Trust
Post transplant wait
Written by
Yuiop
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38 Replies
•
Agnes,
What blood group is your hubby, the waiting time, how long is a piece of string? I am a B+, more common in Scotland, 9% of the population. Priority listing, 19 months waiting. Every case is different, the not knowing is one of the snakes 🐍. Enjoy Christmas and keep that phone charged.
Mark
Yuiop• in reply to
We have asked but everyone has avoided the answer of what blood group, I know everyone is different, I am just curious.
Agnes
• in reply toYuiop
Agnes,
Apologies if I am being dim but not quite following you. I am B+, unusual and only 4 B’s transplanted in 2017, I believe. In the world of transplants, O+ is the crowd to be in with.
Mark
This varies as regards your blood group, urgency, etc, etc.
There is no rule of thumb.
My husband was 9 weeks , then called and transplanted.
Hope you don't wait too long.
Good Luck
I passed assessment on the Thursday, signed the paperwork on the Monday and was transplanted on the Wednesday. I count myself very lucky.
Hey up Agnes
Yes lots of factors as stated.
For me, first call 6 weeks (stopped -liver too fatty) seond successful one 2 weeks later 😁
Miles
6 weeks
Hi Agnes. I am A + and I was on the list only 10 weeks. Transplant went through first time, the liver was good and a good match. These things I will always be extremely grateful for! Alf
• in reply toalfredthegreat
Well freddy at least some things went right 😁👍
Now if only you could stop falling over you noonaah!
Milo
My partner is B+ and waited about 3 months. That was 2016 and he's doing really well.
5 weeks for me, 4 calls altogether. First call was just a week or 10 days of being on the list. Waiting times for my blood group (A+) were 4-6 months so was pleasantly surprised to have mine done so quick. I believe waiting times in the winter are generally shorter than summertime.
Rarer blood types tend to have shortest wait actually - ok less folks going to be donating but also much shorter lists of those waiting also the rarer blood groups (in event of extreme need) can also accept a liver from an O donor.
O is the most common blood group so has the longest of all lists, O recipients can only accept an O liver so although there are more O donor organs there is also the most demand for them from both O recipients and others from the Universal Donor system (i.e. none O recipients).
How long you wait is all to do with level of priority within the group of potential recipients who most appropriately match the given donor liver by blood group, body size and what type of organ it indeed is (and what the recipient has been listed for i.e. brain deceased donor, cardiac deceased donor, split liver).
Each time hubby goes to clinic his level of urgent need will be assessed and he'll be given the priority needed when a suitable organ is offered. There is now a UK donor pool - it used to be that if you were listed at Edinburgh your donor organ would come from a pool of hospitals which provided organs for Edinburgh (& Newcastle Freeman if Edinburgh couldn't use it). Now it's a UK wide donor pool and the highest in need in all of UK gets the call.
Hopefully hubbies call will come very soon. My hubby was on list 10 months at Edinburgh for an O (including a Christmas on the list) but never got the call and got delisted as his health actually stabilised.
They'll be keeping a good eye on him. Trust that the call will come.
Much love to you both, Katie xx
Hi, my husband was B+ and he was on the list 9 days. He agreed to take part in the vittal trial which may have been why he didn’t wait long?? We were told a rarer blood type like B+ is a good thing as far as waiting for a suitable match is concerned. Will be 1 year post transplant in January and it is hard to believe he was ever ill now. Totally back to his old self. I hope things happen soon for you.
My son had his this February aged 16 and he waited 18 days with a false alarm 2 days earlier. He was very lucky.
My hubby waited a year to be put on the list but then had his transplant 2 days after he was listed.
Hi in 2015 I had a Liver transplant .and waited only 16 hours . Good luck
My brother has been on the transplant list since January this year. He has had 2 calls this year but unfortunately the liver weren't suitable for transplant. His health is precarious at the moment, and at the last appointment in Edinburgh a few weeks ago they said his recovery would take longer now and be riskier as he is quite frail at the moment. He's been in and out of hospital over the last 4 months which hasn't helped. So at the minute we're trying to get him as healthy as possible and keep hoping that his time will come.
I am group A & had my first call at 2 months. That didn't work out, got back to Dorset & got my next call from Kings the next day!!
We also have no written record of blood type on any letters but was told verbally when I pestered!!
Good luck...hang in there
Waited only 7 days in 2016, had liver cancer due to Hep 'C'. I'm in blood group AB Pos (AB is a Rare blood Group) which means I can accept any blood group A, B, AB and O, hence only waiting a week for a donation. I was only hospital a week. 66 yrs old when I had the transplant at QHBH
One factor in how long you wait is what limitations you put on the donor liver ( former cancer sufferer, hepatitis ,etc. I set no restrictions at all and was called almost immediately , the downside there is more chance of the liver not being good enough. I finally got my tansplant at 4 th attempt and that was a split liver that I shared with a child after 15 weeks. The liver was really good and is working perfectly. There are so many different factors my advice is expect nothing and you will never be disappointed, but will one day have a wonderful surprise. I hope yours comes soon.
Hello,
I was transplanted during the summer of this year and was on the list for 5 nights. I was not hospitalised and was at home. I am A + positive blood group which did help some. Don’t know how Ill I was, what my UKELD score was and where I was on the list? Have asked LTC but not the most helpful of individuals, as would seem the case in London also?
Hi my name is Anñe 56yrs old also attending Edinburgh .this will be my 3rd visit on 14th March so I am a bit in limbo as I have not really been told very much other than it is inevitable that I need a liver I PBC so hope when I go I get more info from consultant
My own consultant said ask them questions I do but did not get very much response so I hope when I go next week we will start to see some progress as I feel I am in limbo x
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