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British Liver Trust
14,389 members7,099 posts

And on we go

Hi all,

Well it’s 50 weeks today on list not that am counting lol,seems a bit of a milestone to me rather than a year in 2 weeks that just sounds like forever.thought I’d update you all as I know there are people who have been waiting longer and some a lot less,you get good days and bad days but no more why me days and that’s important, because it’s not only you going through the wait family & close friends also.its that time of year where for some the lure of alcohol kicks in but please remember that with just about any form of liver disease alcohol is a big no no and you will with help if needed come through it

Thanks to everyone for your continued support

Huw

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I waited 18 months for my call only for the procedure to be aborted due to a major haemorrhage (25 pints of blood pumped in). The positives to take from any lengthy time on the list are you are hopefully doing as well as anyone with a diseased liver can do. I totally agree about the alcohol temptation that presents itself this time of year and as a recovering alcoholic who is 15 years sober cannot emphasise enough the dangers associated with drinking and liver disease. When I was diagnosed with cirrhosis and told it had nothing to do with my drinking I laughed out loud. I spend every day just being grateful to be alive and having the time to spend with my wife, kids and grandkids. Even though the gift of transplant was not to be for me, I hope that your call comes once they have identified the perfect match. Good luck and have a wonderful Christmas

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Hi

I am fairly well although have been struggling with fatigue & aching joints past 2 months but hoping to continue leading a normal life as possible ,sorry to hear a transplant is no longer an option for you it’s quite remarkable your doing aswell as you are and enjoying the special moments with loved ones,hope you all have a lovely Christmas

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Thanks, the team at The Royal Free just smile and shake their head. It’s all down to good old fashioned stubbornness 😇😇😇 and god obviously

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Good luck for the future. I am feeling sad today in particular as it would have been my 46th wedding anniversary if my husband had still been alive. He always supported me right through my liver diagnosis I have cirrhosis and am at the hospital assessment stage - I had an assessment last year but I was not considered to be quite ill enough. This liver diagnosis does open a lot of mixed feelings

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Good luck with your assessment, it’s obviously a good thing that you wasn’t ill enough but at the same time who wants to be ill enough.losing someone is always hard but am sure he is also very proud of you and your own fight

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Hello. I am sure we all get days when we are down in mood. Thank you for your kind words, and good luck for the future with all that it brings.

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Hey. Your not on your own. Family & friends are great but they don’t know what is really going on....with your body or mind. I’ve been waiting 13 months now....what hospital are you with?

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Hi chelle

Am at addenbrookes they are absolutely fantastic especially as am such a baby I worry about everything from the op itself to what meds I take which isn’t a lot to be honest.just had 3rd TAE and one abilation the 2 nurses I see are so so nice and understanding the consultants I trust totally but they use long words where my nurses will explain in layman terms lol.

What hospital are you at and hope your team are as good as mine

Huw

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Hi I am with addenbrooks as well they are wonderful. I waited 7 months for my transplant which seems like a age and that was 2 yrs ago now. When you get there the gift of life is so wonderful - to see my filly is absolutely the best . Good luck to you hope your wait is not much longer love x

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Filly=family xx

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Hey. I’m at Kings. I think every hospital is different, I never contact my Hospital and they never contact me. I have no reason to speak to them to be honest. Besides when I have bleeds which is too often for my liking. I don’t think I’ll get my call for another 10 months at least if not after then....

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Hi

I go to the hospital fairly regularly due to having MRI scans & bloods done to keep monitoring the tumours I have and at times treatments.Am with you on that I believe I will be waiting quite a few months yet , but must stay focused on keeping aswell as possible but you never know chelle we as well as others could get that call today

Keep well

Huw

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Hi Chelle

I do hope that you hear much sooner than that. It must be discouraging when you see so many (like my husband) go on the list and get a call within 3 weeks but you always sound so cheerful.

My husband didn't want a transplant but agreed after nagging from me and our son but now says he was wrong and is so grateful for the chance he has been given.

I hope that your wait will finally be over in 2018. Take care

Kim xx

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Hello. I am with Kings - they are really helpful which I am pleased about. My family are supportive (3 'children' scattered around the world, and 2 sisters who are also scattered!) . At the present time the hospital unit are assessing genetic factors. I can keep on top of things most of the time but I have good days and bad days. However the family always make sure that one person comes with me to out-patient visits. It is so good to have this forum when I am having a bad day!

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Hoping you get the call soon Huw. Thank you for your continued support on the forum.

Best wishes and merry christmas from us all at BLT

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No thank you for having such a wonderful site I’ve found it really helpful as have many others.am sure the call will come but in the meantime I will look forward to hopefully enjoying life.

Merry Christmas from myself & family

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Thanks for your good thoughts. Sometimes it just makes me feel down. I know that there are a lot of you out there with the same diagnosis - I am tea total but that does not cause a problem as I prefer fruit juice.

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Sorry to hear you've been waiting such a long time. My 5 weeks wait seemed like forever but it was no time at all in the grand scheme of things. I feel so fortunate to have been given a new lease of life so quickly but at the same time my heart goes out to you and others who have been on the list for several months or even years.

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