as many of you know I was diagnosed with decompensated liver a year ago and I quit drinking straight away ( never touched it again) however my bloods and liver continued to worsen I've now been told I have 2 years left roughly but what I find strange is that I'm too well to go on transplant list ( I kind of understand it as at the moment I'm too well but when something happens I will be to unwell ) mentally it's kind of hard as I feel fine now ( get tired and have ascites swollen spleen and portal valve but in general much better than I have in a long time and yet now I'm still dying ) anyway I just wanted to say thank you to you all for advice and chats that we have had ( sometimes it's just good to talk about crap rather than spend your whole time thinking and wondering about test results and what stage your at ect as doing hat can drive you insane lol ) anyway 2 years is not exact obviously but the last 6 months to a year have been really good focusing on enjoying life as much as I can anyway I'll be here for as long as I can if anyone wants to chat or whatever thank you all again and never give up
just an update: as many of you know I... - British Liver Trust
just an update
Hi Paul. Sorry to read of your prognosis.
I'm no medic so I don't really understand the where's any whyfors when it comes to diagnosis or being allocated on transplant list etc.
You seem very understanding of the issue Paul but I would be asking many questions as to how they can tell your life span ,yet still not be poorly enough for transplant? .. but that's just me talking .
You carry on enjoying life Paul, non of us ever know when our time is up on this earth, I applaud 👏 you for being so positive..
My best wishes to you
Linda x
Hi thank you to be honest i can only go by what I'm told but I'm not going to let that stop me nor put me down the truth and fact of the matter is unfortunately we are all going to die and OK so I've been told 2 years but I strongly believe that staying positive can change the outcome not forever obviously but either way I'm not going to just quit or I'm sure it will be alot quicker having said that I also believe that life is very precious no matter how long you have and yes I was told 2 yrs but that does not mean it won't be tomorrow by getting hit by a bus !! I hear alot of people say tou only live once ect but the truth is you live everyday and u only die once so enjoy life and whatever it throws at you I spent along long time with anxiety depression ect hence the drinking but when I got the news it went away I'm not worried anymore as I said just enjoy it with your family amd friends try to meet new people help where you can don't try to be a Saint but have some fun pretty sure thats why we're here there isn't a single thing on this planet that don't make me happier than to see my daughter smile and that's what I plan to do keep her smile going and try to keep others smiling too just because we're all dying one way or the other doesn't mean we all have to mope about or you may as well be dead already anyway sorry for rambling lol just keep smiling x
Absolutely 💯 agree with you Paul. Life throws us all sorts of things day to day , I try my best to enjoy life ,even if that means menial day to day stuff ,I remember back in 2008 when I was decompensated and 6 month diagnosis left to live , extremely poorly yet I didn't know at the time how sick I was ..all I wanted was to "live " a normal day ..a mundane day and not a hospital bed
So hence why I'm greatful for what I have now ..me ,my cats my sister whom I very close to , new friends I have made as I had to move to sheltered accommodation due to mobility issues.
You keep enjoying life Paul, seeing your daughter smile is one of life's blessings.
Keep in touch ..
Linda x
Hi linda was just reading through and read your msg again so thought id say hi and that i hope you are well and still smiling x
Just checking Paul, are you actually under the care of one of the transplant units? or is this a local doctor who is saying you arn't currently requiring transplant? If you are still having bouts of ascites and therefore decompensated symptoms and worsening bloods then you should be at least seen at a transplant unit for them to see if you are at assessment stage. Transplant units prefer to see people too early rather than too late.
So, if you arn't currently under one of the main transplant units you can ask for referral, ask for a 2nd opinion from a transplant clinic.
I wouldn't pay much heed to talk of life expectances - lots of factors can come into play with that. My hubby was decompensated 2012 - listed for transplant 2014 - delisted after 10 months as he improved and 7 years later very much still alive and kicking. He is still under the care of the local hospital but also remains under the care of a doctor at transplant hospital too for monitoring.
Katie
I am under liver and gastro bit have other underlying conditions too such as alpha 1 and others
What hospital though? There are only 7 liver transplant units in the UK and only they can assess and say whether someone is or isn't a candidate for transplant. Having alpha 1 is an added complication that could be continuing to damage your liver and indeed impact on your lungs too. Sooner you are seen at a liver transplant unit the better ............. if only to touch base.Apologies if you are already under one of the following (in that case you'd be in good hands and they will know when time is right for assessment).
UK liver transplant units - Addenbrooks (Cambridge), Queen Elizabeth Hospital (Birmingham), Kings & Royal Free (London), St. James' (Leeds), Freeman (Newcastle) & Royal Infirmary of Edinburgh.
Katie
Paul don't know much about being on the transplant list but one thing I do know doctors ain't got no crystal ball. They can't predict the time span of someone's life with liver diease. They can guess but that's it. My advice would be to get a second opinion. Even change location if you have to. Do what ever it takes to get on that list mate.
Yr a brave bloke mate. I've just had a three day assignment at addenbrooks. I the same as you but they are just leavein me alone at the mo and gonna monitor me closely. Sad to hear that you aint got long left BUT you never know mate and you could get a liver soon. I stopped drinking 18 months ago and smoking 2 months ago. Me!!!! I was a massive drinker and smoked. You will get lucky hopefully and.live a long life Paul. Don't give.up the.fight.... never stop fighting it . Best of luck mate 👍 Mark
Yr be in my prayers Paul 🙏
Paul you need to see someone at a TRANSPLANT hospital. If 43 is a reference to your age, you sound like you might be able to consider many options. Don't get too depressed yet. I a weird, sick, way this is actually good because you are being told you cannot get a transplant because you right now are too healthy for one - so get worse! Of course I am just joking, but the point is, if you get sicker then maybe you will get on that list. There are only so many livers to go around and they save them for the worst of the worst sick people, meaning that you could get ON the list later (unless you have underlying conditions like widespread cancer), so don't give up hope just yet. But you must must go to a transplant hospital to be seen, bring you old notes and lab results. See what they say and keep your chin up!
I'm not depressed and I do have underlying issues which would make it extremely unlikely to survive the transplant thats thier point as I've said b4 2 years or 2 mins whatever time we have we should just enjoy it don't get me wrong I don't want to die but I'm not going to sit around moping about it when I could be enjoying time instead of waisting it and maybe I didn't put it right I'm still poorly just not enough to be on list but when something does happen it will be too late however and the body is an amazing thing not expecting full recovery or anything but tou do never know then again ya never knew the bus was coming !!! Just enjoy life !
God bless and good luck to you!
Don't give up hope Paul. Accept the worst, but keep hoping for the best. One thing Living with Liver disease teaches you, is that you never know what's round the corner. The emotional highs and lows are something no-one will understand unless they've lived through it. The liver acts like a moody teenager at times, just does what it wants and often takes you by surprise, for good or bad. I agree with Katie, transplant hospitals are another level.
Take care
Ewife
Carry on Paul living your life to the full. One never knows what is round the corner but enjoy your future years - a time span is not always accurate, stay positive as you no doubt are and look forward to the next 20 years hey! Best wishes and thoughts. x
Hi Paul, fantastic attitude which I’m sure will see you living way longer than 2 years. 2 years used to be the standard prognosis given by hepatologists when my Mum was diagnosed but she lived another 20+ years and died last year. I hope the same becomes true for you.
Liver transplants, whilst life saving, are not for everyone. You have to balance the risks and benefits and sometimes the right choice for you is not to go down that route. But Katie is right, it should be a transplant unit that asses you and helps you make that decision. I’m assuming you’ve spoken to one of the 6 hospitals she has mentioned, if not please do. They may confirm what your hospital has told you, but they might not.
If you’ve been down that route and told your not suitable, like my Mum, we found our local hospice a real support. People think they are only for end of life but they aren’t. They’re all about getting the best out of whatever time you have left. They have fantastic services for anyone with a life limiting illness and organise some amazing activities. You sound like the sort of positive, upbeat guy who might get a lot out of it.
All the best for the next 2 years and beyond.
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