Hi I'm Kez and I was diagnosed with end stage liver disease last September. I was as ill as you can imagine being. Meds are keeping me well and able to look after myself but my consultant is pushing me towards having a transplant. I have alot of problems away from my health which is making me wonder if a transplant is the best option for me.
I stopped drinking 9 months before my diagnosis.
Hiya transplant is the only option if you have been diagnosed with end stage... And especially if your consultant pushing for it as well he must have faith you will improve... You will be amazed at how fantastic it will make you feel and pre existing conditions I had pre diagnosis have greatly improved for my after transplant 😉
I'm so pleased that it has worked for you. I'm sure it would for me too. I lost everything I had after diagnosis, my children, my boyfriend, my home. Whether I have a transplant or not, that won't change. I'm going to speak to my consultant next week about this especially to find out what will happen if I don't get a transplant.
K
I can understand the reluctance but one of my closest friends lost everything due to alcohol and then she had her transplant and over a few years she regained the trust and love of her children back and men and homes well they come and go but you need your health and faith to turn everything around and you had nothing to lose now so give it a shot as we both know life and people are full of surprises x
Thanks for replying. I will give careful thought to what you have said. At the moment I am completely isolated in London where I know no-one and that is also a huge factor in the possibility of a transplant. No-one to rely on afterwards. My consultants are stars though and go way beyond their duty of care towards me. They still can't get over that I was so near death before I even went to a GP.
K
Hi Kez, transplant is a purely life saving operation. It is only considered and you'll only get 'the call' if by that stage there is only one other outcome. They are not given to change your life only to save your life.
Before you'd be considered for transplant you'd have to undergo a liver transplant assessment to firstly establish whether you are poorly enough to need a transplant i.e. have all other avenues of treatment been tried, what symptoms are present and sadly to establish 'how far gone you are'. Secondly are you well enough to survive a transplant operation and go on to cope with the recovery period. This part looks into any other health issues plus your social and support networks and even your mental health.
Transplant isn't down to one doctor its a whole multi-disciplinary team made up of consultants, surgeons, transplant co-ordinators, dieticians, pyschiatrists, social workers, anaesthetists and more and they all have a contribution to a big meeting which decides on listing or not.
If you are offered a transplant assessment i'd take it, it is the best full body MOT you will ever have and at the end of it you'd get your say on whether you think you want to go ahead and whether they think you need it. I would urge caution if you decide you don't want to go ahead if it's offered, as I said it is purely a life saving operation and a decision to say no could result in an early demise because if you decide later on 'well actually I think I do want one' it could be too late and there could be no going back.
Obviously its your own decision but that will all be explored at t/p assessment, I guess no one actually ever 'wants' a transplant because it's huge but when weighed up against the alternatives transplant is an amazing gift to receive.
Wishing you the very best of luck, Katie x
Thanks. It is definitely on the cards as my consultants want to get me started on the journey as I have decompensated alcohol cirrhosis, diuretic intractable ascites and significant physical deconditioning. The only worrying thing is my lack of support after the event which all involved are aware of.
K
Same here I lost everything
I live in a wonderful city but I know no-one. Since I became ill and then got diagnosed, I've had no-one to come up to me and give me a cuddle and tell me it will be alright. I'd give anything for that.
K
Kez,
Your life at the moment is entirely governed by your illness and before that some of the things that might have contributed to how you feel.
If you follow the advice of your consultant and opt for a transplant then that will be the first step in changing your life. ( second step if you include stopping drinking)
Trust me, jojo has a lot of experience and knowledge, you do well to listen to what she has just told you.
Its good that you are getting the right care and with the meds you are coping and there is stability in your condition. However, the liver disease is not going to improve and your consultant will not be talking about a transplant if there was hope that your liver is able to recover.
My own story is of alcohol related liver disease going from diagnosis to transplant in just 14 months. That is how quickly you could find yourself in a far worse position.
My thoughts are, while you are relatively well you should make the decision to request the referral to a transplant centre. From my experience, you will get excellent support and care from whichever centre takes you for assessment.
After making that move, there are plenty of people on here who will be able to give you support and encouragement as you go through the process of being considered for a transplant. Quite a few of us are transplant success stories.
Remember, your life isn't just what happens to you. A transplant is not an easy option, but the alternative is much worse - both for you, and whether you can see it right now or not, other's who get a second chance to know the 'real' you. Nobody chooses to have a transplant, but if you need one and you are being offered the opportunity then you take it. You will discover that there are people close to you who will rally round and let you know just how much they care.
When you go to your appointment, for support, make sure you take with you somebody you trust. Please let us know the result of your appointment.
Take care,
Jim and Lucy
Thankyou very much for your kind reply. I am taking it all on board and listening to everyone as my consultant has told me I only have a small window to make my decision. Unfortunately I don't know anyone near me to go to the appointment but I trust my hospital and bless the doctors daily for all their help.
K
Your mentality and reasoning behind it might be the disease speaking, not you; may be once you recover with your new liver, you will have a new outlook in life. Maybe
No I honestly have no-one. I relocated to London just over 2 years ago and while I was so ill I haven't been able to make friends so I'm alone. The hospital have spoken to social services and they say I don't meet the criteria. Well if I don't, who does. I did say my hospital are fantastic.
K
Having a transplant was the best thing to happen to me considering the circumstances. For me it was virtually a complete cure. Many recipients have other health issues as well as an increased risk of certain cancers, kidney damage, diabetes, etc. I think it's a small price to pay for having your life back.
Hi and thanks for replying. I'm beginning to lean towards having it after all the positive feedback on here.
K
Hi
I'm so sorry you are going through such an awful time. Is there any chance your consultant could get in touch with the sociial, they might listen to him. I really feel for you.
Please take care Lynne
First things first, if your consultant is prepared to refer you, and the transplant centre is prepared to assess you, then i would strongly advise you go and do the assessment. The outcome of that may be a critical help with your situation with social services.
If it is deemed that you should be listed, but the only reason for not doing so is the lack of a care giver afterwards then this should raise you up the social service priority list. YOU CANNOT BE LEFT TO DIE DUE TO THE LACK OF A CARE GIVER! That is not acceptable in the 21st Century.
You do need some additional advice though on what you are entitled to, especially if social services are still refusing to help. I would suggest Citizens Advice in the first instance but there may be other organisations able to help too. I would also get in touch with your local MP. Despite appearances, MPs do like a good cause to fight for and some are bloody good at doing so. Hopefully your local MP will be one of those. In fact, i would get in touch with both Citizens Advice and your MP now. Getting their help early will hopefully lessen some of your anguish.
Hopefully, the peeps at the BLT will see this post and provide you with some additional recommendations as to where to seek help too.
Just to finish, you need to remember how far you have already come. You have made such great strides that your consultant has complete confidence in you looking after both yourself and any transplanted organ you may receive. You should treat that as a massive well done and take the reward he is now offering. It is well worth it.
She has. She thought I would get help as my relationship ended when I was diagnosed and he wanted to evict me. My symptoms were so bad he let me stay until I could at least walk. I became officially homeless on 15th and the council put me down as very vulnerable and will rehouse me when something comes available. At present I live in his bedroom. Like everyone I was denied PIP and am appealing because I will be destitute. I also go to court on 1st to try and gain contact with my 12yo daughter who's dad stopped any contact with me in Aug. Plus I am trying to get my belongings and personal papers off of him which he won't let me have. And social services say I don't need help. It's laughable.
K
Wow, where do I start here?
First of all let me say how sorry I am to hear of your problems. There are a number of issues here that need to be considered and confronted. What Katie has written is all good stuff and there are a whole barrage of questions your going to have to answer before your'll be considered and put forward to go on the transplant list. Like Katie has said, the team who make this decision will need to know your past and present circumstances. Donor livers are not so easy to come by and the team need to know that a transplant is a viable option in your case and that it wont be abused. They'll look at your past, and present health concerns as you'll have to be fit enough to endure the operation and convalescence afterwards. In most cases its all about your future quality of life. This is about you being given a second chance of life.
Most of the people in here know me quite well now, I too have travelled down the same alcohol path in life as you have Kez. I know all too well, that feeling of when everything you had and hold dear is taken away from you or has gone. I've known those feelings of emptiness, despair and loneliness, There have been times when that bottle of booze was the only friend I had and how suicide seemed to be a easy way out. Only when you've hit rock bottom there is only really one way to go, and you'll need to find that inner strength to want to climb back up again. I suppose the magic word here is FIGHT. The excellent healthcare team will be fighting for your medical health, and you'll need to fight in rebuilding your life. I believe it has to be a mind thing. When I had my variceal bleed, that was my wake-up call. I sort of psychoanalysed my self and my life. By doing this I was able to say, "Ok Richard, this is what's broken, now what are you going to do to make it right". This also made me look back and see where certain chapters in my life had gone wrong. Sometimes we don't learn from our mistakes and carry on making the same ones over and over again.
I could talk about this for hours. God, I should write a book, "Richard's Tapestry of Life". (only joking).
If there's anything you'd like to know then please let us know.
I see that there had been really good support from others here, so your not alone Kez. Just hang on in there and things will get better. Just find that inner strength.... you can do this. You are not alone.
Kind Regards
Richardxx
Fight is definitely what I have decided to do Richard. I've been looking for a general social services office near me in Walthamstow NE London but nothing seems to apply to me. I'll keep looking.
K
Good for you. I can understand that there is a lot whats been going on is private and that's fine. I wish there was something I could do to help. I used to live and work in Edgeware. North London was my old stomping ground.
I have only lived here for just over 2 years. I originate from the south coast, in the new forest, between Southampton and Bournemouth. Hence why I have no support network here and my family down south just don't want to know.
K
Hi Kez12,
Your story is very similar to mine, I lost the lot, friends, family, flat, job and marriage all alcohol related. I was transplanted and now only 3 months in I feel that I have a second chance, I have hope. I like my version 2.0, and i’m sure you’ll like yours. I’m in Totton by the way.
All the best
Will
I know Totton well. I used to live in Hythe. Small world. I'm in catch 22. I can't be referred for assessment until I have my own flat. I am currently sleeping in my ex boyfriends spare bedroom which is awkward to say the least. I'm on the council list as homeless but as you can probably imagine in London that's a never ending list. I tried to rent privately but failed the credit check because they do not accept ESA and PIP as income even though my credit is excellent. I ask everywhere if they know of a landlord who would look on me favourably but nothing. So I'm in limbo. I'm glad to hear your health is improving and hopefully I'll be able to say that too one day. X
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