Waiting times

[Chelle_]

So how long has everyone been waiting/was waiting for there call? & which hospital were you under?

I have a potentially long wait....I've just gone on the transplant list....it's all I can think about 😳

[Catfishjumpin]

I hope you get sooo lucky! It would be great to hear they have called you. I am not on yet and I have been instructed that it is the end and to notify my family. Cannot imagine thats true but its what I am told. I do understand how easy and fast this disease esculates and that its entirely possible. Hang on, you look and sound like one strong determined lady. Aloha

[Hidden]

hi Chelle ,,yeah ide guessed you'd ask that question ,,,i cant answer it as it changes day by day from what ive read ,,and reading posts on here,,,sadly its a waiting game,,,lets hope you get seen to soon keep being strong as catfish said ,,,im at the Royal Surrey on the 7th for a consult ..ill ask as many questions i can ,,,coz he mumbled trans in our chat ,,,,which put me on edge .....i hope im far off from that. i have end stage which was decompensated ,,but my liver improved some what when i stopped drinking ,,,anyway get that call soon and think of sugar and spice and all things nice ,,,,Matthew xoxo

[RodeoJoe]

The impossible question. I can only answer for myself and it was just over a month, I was on priority and believe I probably only had a few months left in me. I was just saying on another post that I've not heard of anyone dying waiting, I'm sure it does happen but usually due to other complications.

I'm certain you will get a liver, when depends on how well you are. The better you are I think the longer you wait. If you think about it it makes complete sense.

The important thing to do is to live whilst you wait. And to get regularly checked up, and inform the transplant team of any changes in your health.

[retwos in reply to RodeoJoe]

Just how would you know if some one died before they got the call ,? Obviously they wouldn't be able to tell you , the percentage of not receiving a transplant are quite high , which is a real shame , but there's not enough diners for everyone

[RodeoJoe in reply to retwos]

Because I don't believe people necessarily die, before they get the call, they are more likely to become to ill, and are taken off the list. I was told as many as 20% of people waiting never get to transplant, but like I said I think this is often due to other complications for the reasons I stated.

[retwos in reply to RodeoJoe]

youve answered your own question, people are very ill while waiting or they wouldn't be on the list , n some people just don't get the chance of a transplant as I've said there's not enough , most people at assessment get told weather they will or won't be put on the list , you have to meet a certain criteria.

[carmik]

Mu husband was at Kings. Waited 9 weeks but he has a blood

group that can take his own or "o". Probably why so quick.

Good Luck

[h0b0]

Hi. Congratulations. Your question is pretty impossible to answer as it's different for each individual. My partner waited 6 weeks only. I know that's good but didn't find out 'til after the op just how ill he was. The surgeon at St James Leeds told him that 2 more weeks & he would have been too ill. It's really difficult waiting for "THE CALL" but just carry on as normal as much as possible.

Take care.xx

[jojokarak]

I was placed on list in February then on and off due to other tests which needed doing at the time. Then my condition worsened but they also had the struggle of making and keeping me stable, thing is you can feel ok but your blood's tell a different story. And I had mine 3 weeks ago and that was by the skin of my teeth as my sodium levels kept fluctuating to have the transplant the levels needed to be above 125 and mine was 126. I know it's hard but you really have to just carry on as well as you can and just put to back of your mind as it depends on so many factors as to whether it's a suitable time. I wish you a short and stressless wait and will send positive vibes your way xxx

[spoul]

My friends waited 5 months in Leeds 😊

[Barnetaccounts]

I've got HCC and am on the list at The Royal Free 17 months and waiting Blood group 'o'.

So as you can see everyone is different

[nickiwj]

Hi,

I have been on the waiting list for 10 weeks and I'm at the Royal Free in London. I go the Royal Londkn hospital for my check ups and I am there later today for my once a month check up with consultant, blood tests and ECG and a US liver ultrasound. It's going to be a loooonggg day!

I have had PBC for 10 years. It's my bilirubin that is basically attacking my liver and my levels are very high which has scarred my liver to the point of needing a transplant.

Hope you don't have too long to wait. It's difficult to put it to the back of your mind waiting for the call. Pack your bag and forget about it. Make plans for childcare, pets etc and try and keep as well and healthy as you possibly can.

Much love. Nicki 💞

[sheri44]

hiya hunny. Like i said the list changes on how your doing. After all the biopsies etc i was listed in Feb this year. Got a false call Easter Sunday went to clinic 19th April. Got a call 3am 20th April. I was told i was dying and only a transplant would save my life. The 19th i went straight to the top of the national register. I was at Leeds St James but the next liver was mine from wherever. Didn't expect it so soon. It's horrible waiting it takes over ur life. Phone attached to you 24/7. I pray 🙏🏻 you don't have to wait long for your gift. I wouldn't be here today i didn't realise how sick i was. Pls try and carry on with life and don't let it ruin or run ur life. The hospital will get hold of you one way or another if your needed. Msg me anything if you need to talk. Good luck sweetheart ❤ xxx

[jojokarak]

I feel great thanks still tender at times and just getting used to side effects of Meds lol how long ago was your transplant?

[RodeoJoe]

It's also worth pointing out that as far as I know anyone on priority gets first choice whatever region they are from. Whatever hospital makes no difference, it's UK wide.

[retwos]

Hi , first what's your blood group as that puts you in a certain group if its say one a lot of people have then obviously your in a bigger group so there's more people waiting n your chance of transplant is longer .also are you urgent or priority this goes of your ukeld score .when you give them your contact number make sure is a home no n a mobile n if possible a family member so then you have all corners covered . The call when it comes could be any time ,day or night mine where all in the early hours. I had 5 of them but the first four were not possible to be done so all so expect that , you may get a call n then be told a little later that the op can't be done .mainly to the way the organs retrieved n the time frame .my best advice is to try n just get on with your life if you can n rather think every time your phone goes ,is this the call get a cheap mobile n just give the transplant co ordinaters that no so you know if it goes 9/10 it's the hospital good luck with it all n keep smiling ))))

[Chelle_ in reply to retwos]

I'm blood type 'O' and a routine case - I have been given up to two years; I was just curious as to what everyone else's wait time/blood groups etc were.....being nosey to be honest. I feel as fit as a fiddle and don't think anything will happen for at least 12 months.

[AyrshireK in reply to Chelle_]

If you want a centre by centre break down on average wait times etc. etc. The 2016 NHS Annual Report on Liver Transplantation is available at :-

odt.nhs.uk/pdf/organ_specif... (it makes quite interesting reading if you like tables, charts and graphs).

Each person is an individual though and length of wait will be determined by blood group (O being the longest list - most folks waiting but also most donors - though O livers can also be given to other blood groups), body size and priority of need. Centres have different sized lists too dependent on the area they cover. London hospitals have biggest lists, Newcastle the shortest. I know when hubby was waiting friends and family misinterpreted the term 'list' and thought it was something you worked your way up and the longer you waited the closer to the top you got but it's not the way it works.

The most needy who match any offered liver will be the ones who get the call.

You need to try and put the 'wait' at the back of your mind and carry on living. Yes have your grab bag packed and your phone by your side plus arrangements made for 'when the call comes' but try to carry on life as normal as you can. If it's a long wait then you don't want to be living on a knife edge the whole time.

All the best to you.

Katie xx

[Chelle_ in reply to AyrshireK]

Wow thank you Katie; I think I just need a few weeks to pass and I won't think of it so much....

Thank you xx

[retwos in reply to AyrshireK]

Couldn't have put it any better )))

[retwos in reply to Chelle_]

Hi again yeah your in a big group about 40% with that blood type I'm ab so I was very luck only 4% seems like it would be longer for me but it's the opposite as less people in group more chance an early call .i got put on the list in may but then had liver failure so taken of for 4 weeks then back again had 4 phone calls for transplant but unfortunately was,my possible to go forward as of the way the liver would be retrieved.as you may know there's 2ways of retrieving an organ .luckily for me the 5th call was the one n I had my transplant ,a day doesn't go by where I don't think of my donor .your turn will come , just try n keep yourself in a good place n have s good diet ,things can change very quickly so live your life as best you can .just keep thinking that when your time comes for transplant that's the right time , all the best

[dckimberly]

I was at Addenbrookes and fell into the average wait category, with A negative blood type. Mine was 3.5 months.

But listen, to be fair, be prepared for the first call to not be the last. They warned us over and over..some surgeries have been halted when a person is being wheeled down to theatre. I myself have seen people prepped and waiting only to be sent home 6 hours later.

As I'm sure they discussed all of this with you while you were signing the papers.

Not trying to be discouraging, not at all. I was a first timer..we waited 12 hours. It almost was a no go as my liver had to go to pathology because they found a clot in my donor angels body.

But the phone will ring when you least expect it. Have a suitcase packed. Know where yr chargers are for phones, iPads, etc. I keep art supplies in a small case, because I've been back in so often. Comfy pjs and some good non stick slippers, for when your up and walking.

It's always exciting at first, but after a while, you don't really think about it..then the phone rings! Lol

Xo

Cheering you on!

Kimberly

[Millie09]

Hi chelle , have just come across your post , I often wonder if ever I will be put on the transplant list , I am no longer under any hospital only my doctor . Lft every 6 months and that's all I have ! I really wished I could have a full MOT so to speak .. I do worry one day I will never wake up due to lack of care

.. Hope you don't have to wait long for your gift .. Good luck . Linda X

[AyrshireK in reply to Millie09]

Millie, If I were you I would be requesting a referral to a hepatatologist or gastroenterologist (at the very least). Having had ascites in the past your cirrhosis is fairly far advanced. You should be getting better monitoring than only LFT's every 6 months. You should also be getting 6 monthly ultrasound scans to check for ascites plus signs of anything more sinister appearing in your liver plus checks on your other abdominal organs. Regular endoscopies are also a must to check for signs of varices.

Like you say you would like a full MOT and that is not unreasonable, if your condition where to deteriorate to a level that you required transplant then you want the best possible chance of it being picked up soon enough.

All the best, Katie x

[Millie09 in reply to AyrshireK]

My thoughts exactly Katie , I was under a gastroenterologist untill I was discharged over a year ago , last time I went to see my doctor in June for my LFT , I did actually mention about having a scan and he said there was no need as I did not need one ?? Having read everyone's posts on here has opened my eyes as to why I am just being left . It is so annoying . like you say , how do I know there is anything sinister brewing up that can be treated now and not when it's too late .. I am on the case tomorrow and I will demand I get referred , if the dr declines I don't know who else to ask . Yes in 2008 I had Bad ascites , told 6 months left to live , but with a good healthy eating plan , no smoking or alcohol my LFT has been good . Only ever had one endoscopy ever ! No varices were detected at that time . Thank you for your support and advice . Need to get the ball rolling .. Take care .. Linda xx

[Chelle_ in reply to Millie09]

Hi Linda,

My LFT's are good - but they are deceptive, they have told me that because my spleen and kidneys are working over time it makes it look like my Liver is doing a good job, however I end up in hospital with ascites maybe every year/two years and they have noticed that my liver stops completely and almost has to be rebooted by the stint in hospital to get it working again.....I have ultrasound every 6-9 months and MRIS/CT every 6 months and endoscopy's ever 3 months for my bleeding varicies. I have been put on the list not only because I have Liver Cirrhosis with 18 tumours but I also have a clotting illness (myeloproliforative Neoplasm - Polycynthymia Ruba Vera) that has cause me to have Portal vein thrombosis. They hospital also believe that if I end up back in hospital - it could be my last visit to hospital and they will have to do emergency surgery - if they can....

I would do exactly what Katie says and get a second opinion but from a Heapatologist this time!

Good Luck xx

[Millie09 in reply to Chelle_]

Hi Chelle , thank you for replying back , so even if your liver function tests show all is normal that may not ring true ? Well confused now and has got me a bit worried now as I thought everything was ok due to the fact I was discharged last year from hospital and my doctor when I saw him on June had no concerns . Wow , that' must be awful to have to go through so many procedures 😞. Your one very strong lady , I have never seen a hepetologist in the 8 years since diagnosed with Cirrosis . I am going to contact my dr again , as he did message me yesterday to say he was not ignoring me but was looking in to the affects of the milk thistle for me , as I asked on here I'v it's ok to take .. Many mixed reviews I must say .. You have certainly opened my eyes and I thick you for that .. I really hope that things don't get any worse for you Hun , praying you get a liver very Soon. . Keep me posted and vice versa . Sending (( hugs )) best wishes Linda X

[tillycindy in reply to Millie09]

Hey chelle, You told that boss of yours yet?. anne xxxx

[Chelle_ in reply to tillycindy]

Ha ha no not yet Anne, I'm waiting until after the information day.....I want to know how restrictive they will be with the 'time to get to the hospital' I just feel like I need to get my head around things first maybe....xx

[Chelle_ in reply to Millie09]

If you have cirrhosis, I could definitely suggest you are under and check regular under a hepatologist...fingers crossed Linda xx

[Millie09 in reply to Chelle_]

Thanks Chelle , I did leave a message with my doctor on Friday asking him to refer me . I think it's bad I have just been left out of any proper check ups . I wil let you know what happens . Determined .. Hope you get sorted this week xx