British Liver Trust

145 days

Well it's here, according to popular websites today is the average wait time for an adult needing a liver to be on the waiting list.

There were no fanfare trumpets when I woke up this morning, no ringing phone, no balloons or party poppers. It's just another day. Another day patiently waiting.

There is no real point in counting the days. When your day comes it will be at the right time for you. The only reason I have kept track of it is purely out of interest, it's not like a countdown to Christmas. (Although that's a thought, Haribo advent calendar for transplant)

The wait continues, I have never been average anyway. I hope all of us sat at home or at work patiently waiting are doing well, and all those that have waited, average or not that all is working as it should be.

Take care peeps.

😬📱❓

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Well i hope that your wait proves you are only 'slightly above average' Identitiy!

The good news is ive seen that Haribo Star Mix and Tangfastic now include blueberry and cream soda flavours!!!

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Been there and brought the bags already... lol

Beautiful

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Im going to get some later!

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Hope you get your call soon 🤞X

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I've done the same....I'm interested to know too....so today I am waiting 281 and I am still waiting. I know Dulux is about 365....I hope you get your call soon.....I know how tough it is waiting for something you know will happen but you just don't know when!! x

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Hi chelle, is it really 281 days since you were told, that has gone so fast .but I bet not fast when waiting for a new liver.. like you, identity and anyone else waiting..be positive your time will come x

I have not reached that stage as yet but not far behind now 😐

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That explains Dulux "eccentricities" lol, gone a bit stir crazy 🤡

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Wow Chelle. You do amazingly considering you've been waiting for so long. I do hope it's not much longer Gal x

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Identity... you keep that happy personality of yours going..it sure makes me laff and a lot of others I bet on here. Your time will come.

Just keep on loving the haribos 🍬🍭 .. 😉👌👍

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Hi identity75, I hope you get one soon. When I got mine I waited 8 days , you sound a positive guy so stay that way.

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The way I see it is not getting the call at the moment is a good thing, people keep buying me Haribo and other goodies. I get to eat pretty much whatever I want all day long and then have little naps too. It's bliss. Lol

According to Mrs Identity this will all end after the transplant and I'll be on a strict regimented diet, no more Haribo. Boooooooooo (nobody likes her) lol. Just kidding my love.

At the end of the day it gets dark. I'll get mine when the time is right, but on the other hand is four fingers and a thumb.

Now who's got the sweeties and why haven't I got any???

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A word of warning after transplant due to anti rejection drugs you crave sweets lol so you will need to lock up the haribos lol 🍭

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WHAT??? I will crave sweets and not be able to have them!!!! It's bad enough I have to get fed through a tube up my nose for five days!!!

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The thing is it's a double edge sword. I waited about 14 days on the list. But I was on priority and didn't have much chance of survival beyond weeks rather than months. And those 14 days were INTENSE. Every day I woke up and realised I was still alive was a bonus. So I imagine the longer wait means you're physically in a much better place. I'm not saying anything is easy and I know life goes on hold. BUT your time will come. Good luck!

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Identity,

When I was listed I just put it in a drawer ( metaphorically) and got on with my life, just tried my best to be fit, positive and as healthy as possible.

Then exactly 14 days later, at 8am got the call. Completely unexpected. Frightening as well as exciting. I don't know why it came quickly, I've always considered it to be luck of the draw rather than any particular priority or how ill I was.

Like Joe and Brummi, didn't really have too much time to dwell on what was happening or not happening.

I hope your call comes soon.

One piece of advice - take one of those little hand held fans. Came in really useful and I later got one for a friend when he got his transplant. You don't need to take much on the day, just yourself. Anything else just becomes irrelevant clutter. Anything else you need can be bought in later when you are out of intensive care.

Maybe others have advice on how to prepare for the call.

Take care,

Jim

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I AM A CARRIER OF C-DIFF AND MRSA SO A TRANSPLANT ISN'T POSSIBLE. I TRUST GOD AND I'M NOT GOING ANYWHERE UNTILL HE SAIS IT'S TIME FOR ME TO. I had hep c type 3a for 30 years and was stage 4 when they gave me while I was taking the Ribavirin and Sovaldi and cured it. I discovered while I was taking the Ribavirin that it wasn't supposed to be given to late stage liver disease patients and there was another drug that was supposed to be used in it's place. Ribavirin kills the healthy liver tissue also and this Doctor wanted me to take it for 6 months! 2 full courses! The hep c was out of my system after 3 weeks so I only finished one course of 3 months. I called the PA when I found out they should have given me the safe drug and she lied to me and said it had only been on the market for 2 weeks but had really been on the market for months. Then she refused to even make an appointment for me to discuss it with the doctor. So I finished the 3 months and never went back. I still don't know how much damage it caused me but I know how I feel and I know it did a lot of damage. There should be a law against doctors and dentists lying to patients. If I had taken it for the full 6 months I would be dead. I can't have a transplant because I'm a c-diff and mrsa carrier. I intend to write this doctor a letter and explain to him that I know what his PA did and am looking into finding if I can sue them. At least then I will have something to leave my children and grandchildren.

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Hi Donnaejm, sorry to hear of your problems, keep searching I'm sure you will find a loophole and be a survivor. Stay positive...

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Hi I waited 7 months not sure how many days that is but the day finally arrived. Thinking of you x

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I waited over 18 months for my call and when it arrived I was fearful, relieved and pretended I was none of these to protect my family. My TP had to be aborted as I suffered a major haemorrhage and then spent 12 days in a coma that the head of ICU said I would never recover from. Short version I did recover and although I will never get a chance at the cure that a TP offered, I am happy to say that I am now 9 months past this trauma, bloods have never been better, haven't looked this well for years, and my Professor shakes his head and just smiles every time I see him. I have had countless embolisations, and although I get exhausted quite easily, I look back on my "days on the list" with fond memories about how mad things were ensuring I was always contactable by the hospital. Now I can go anywhere as long as I feel up to it. I know my time on this planet will be shortened but the advice I can share with you is stop counting days, do what you are told (as hard as that was), and then when the time is right you will get that call. Be grateful that you made it onto the list, many don't. Then hopefully you're wait is not too long and you can look forward to a long healthy future.

Good luck

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I can't get a TP because I'm a MRSA and C-DIFF carrier. But I KNOW GOD and I KNOW HE has a plan for my life and I won't be going anywhere until HE sais it's time. I'm ready at any time but in no hurry. I do the best I can with what I have and life couldn't be better! I feel like I was found "worthy to suffer" for HIS glory. I'm already a walking miracle because I had HEP-C type 3A for 30 years and nobody I've found has lived past 20 years with this form of HEP-C! Not only that I drank heavily for over 10 years of that time! I had fallen away from GOD and even after I found out I had the HEP-C I kept right on drinking daily a lot. GOD finally got through to me and took my addiction away from me. A doctor prescribed Sovaldi and Ribavirin and it cured my HEP-C but during the course I discovered Ribavirin is not to be given to late stage liver disease patients because it destroys the healthy liver tissue also and when I began the course of drugs the doctor lied and said I was stage 3&1/2-4 in Cirrhosis and stage 3.7 in Fibrosis when in fact I was stage 4 in both. When I found out there was an alternative drug that was supposed to be given I called the doctor and got his PA. She lied to me and said the drug had only been on the market for 2 weeks but it had been out over 2 months! She even REFUSED to allow me to make an appointment to discuss it with the doctor! I took the 3 month course of the 2 drugs and stopped. When I went back and saw her I took my husband and oldest daughter as witnesses and after I explained that the first warning on the Ribavirin label was never to prescribe it to late stage liver disease patients to which she replied "well that's not for our hepatitis patients", even though those are the only ones it's prescribed for! After that I never went back. The doctor wanted me to take them for 6 months even though the HEP-C was out of my blood within 3 weeks of starting them. If I had taken the 6 months of meds I would have died. I spoke to my other doc about it and he advised me to write the doctor a letter and tell him what his PA did. I haven't done it yet but I am going to today. It's been over a year but it's never too late to do the right thing. I know how much healthy liver tissue I have left and would kind of like to know even though there's nothing that anyone can do about it. That doctor told me that I only had 1-3 years to live if I didn't take the drugs and maybe 10 if I did. I knew he was lying when he said it. I can usually tell when a doctor is lying to me now. I don't know if I can sue them or not but I think I'm going to look into it. At least then I will have something to leave my children and grandchildren and maybe just maybe stop these people from killing anyone else. Any of you who are Christians please pray for me and pray I do the right thing. I've never believed in suing anyone. But I found out where the Bible sais not to it's talking about not suing a brother or sister in Christ. I truly believe these people aren't my brother and sister because my brothers and sisters in Christ don't lie to me. All said, GODs will be done in this and everything else in my life. HE has kept me alive so many times when doctors said I was going to die. HE is THE ONLY ONE I believe.

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What website as I believe there's no average time some people wait weeks others years n some don't even get there transplant at all it's a when it's your time in my view

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Hi identity75. Having read your link I find it very informative yet scary at the same time . I would have liked to see the film myself but don't drive and my mobility is now affected ..

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Well I'll eat my words but it does say depending on urgent or priority but your right , I got it wrong

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I waited about four weeks for mine, I was pretty ill however and spiraling downward.

The advice Jim gave is good, particularly the handheld fan. I took in a D-fenix mister/fan that has a battery life of about ten hrs, and can be plugged in with a plug/usb thing. Think it's about 15 quid on Amazon for that fan, but even a little cheap one is good.

I would also suggest slippers in a larger size than you need..

Hope you keep well and good luck :)

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You're so right about the slippers. Three to four sizes bigger wasn't enough.

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I hate slippers, never wear them. Much rather bare foot.

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Me too, but they won't let you walk around like that on the ward..wet floor showers etc. And trust me, you will want to get mobile and out of there as quickly as possible :)

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What about flops? Don't mind wearing them

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Perfect footwear to be honest, I couldn't get my feet into mine after the transplant though. I wouldn't worry too much about that though, I think some people get more fluid retention post-op than others. Just see how you are :)

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Unfortunately, post operatively and on high dose immune suppressing medication, bare feet will be frowned upon. Sorry about that.

Jim

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Hi

I am up to 365 days and I have been everywhere locally I am thing about doing a finger tip search to see if I have not seen something

Still I am still here and I know it will happen one day, keep cheerful

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Hi hunni God you made me do maths haha 😂 mine was about 240 days and I was on and off the list like a bloody yoyo. I look at it as a good sign that your still at home and coping and still managing to eat your haribos. I never even thought about how many days whilst I was waiting or afterwards until I seen your post. Always remember someone worse than you because even your first call could be a false alarm or as mine came it went to someone who had one 2 days previous and his was rejecting. I even in the state I was thought thank fuck for that lol. No one can ever ever prepare you for the emotions your good to feel when you do get it x

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My DH is on the TX list as priority (expanded list) but todate waited 70 days - we have had 2 false alarms 1st false alarm we were called to hospital after 5 days on the list, we were at the hospital for almost 24 hours before being sent home as the donor liver had gone through profusion tests and eventually found too be too damaged, 2nd false alarm after almost 6 hrs at hospital - told donor liver was "too fatty" and not worth the risk. The pressure is intense, yes, agree you can't go too far from home and always need to stay contactable via mobile etc. Life is Sooo very hard seeing the person you love struggle and get weaker. BUT my job is to try and stay upbeat for my DH and our family!!! Please please let that phone call come soon. Good luck everyone who is in a similar situation xx take care xx

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Hi

I really hope you all get that call soon. You have all waited long enough. Please take care. Lots of love Lynne xxxx

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Hi

Thank you Lynne, unfortunately the wait goes on xx

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I'm not at that stage yet but just feel for you all xxxx

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Dear All,

Firstly, it's so good that everyone can share their stories here...

As you may remember - my husband had his first Tx after many calls - but the liver didn't last more than a month and then he began to die along with his liver... The 2nd call came about a month before he was going to die... He'd already started planning a trip abroad to end it all.

It was all these wonderful people, here, who stayed with me during all the transplants and operations - I was messaging at 3am and at all sorts of hours - but someone was always here to answer my call...

You guys are amazing - and all the people still waiting for your call - I pray with all my heart your call comes soon...

Take care and lots of cyberhugs to you all.

Yours truly,

Pear

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