my husband as liver failer and is being put on list gor a new liver today, he also as hepititus c the worst it can get,

[nellytwist]

he been in hospital for a while as he gets a build ip of fluid on stomach they drained 20litres today, does anyone know if you can get some kind if extra benifit like dla, for help as i do everything for him as he to week and cant walk far, also it costs a fortune in taxis to and from everywhere as he cant walk, we dont own a car as it is to expensive to run!!! I would br very greatful if domeone can help me!!! x

[Bigplanet67]

I am really sorry to hear your problems and hope your husband is ok. I too have cirrhosis and on loads on medication. I have been getting ESA payments from DWP and just had a medical review which they decided I was fit to work. I am appealing this. The problem is that they don't see liver disease and its symptoms as a disability. But you and husband might be able to claim DLA there are strict rules and they are trying to reduce this benefit.

I wish you luck and your husbands health.

[Ruby52 in reply to Bigplanet67]

I have the same as yourself, I also was told to go back to work Ha! I told him that I have worked all my life, and looking after people (nursing) I have had ESA & DLA for about 6mths now, I said can't I just die in peace !! It makes me so very mad that we have not got a disability, we can walk, talk, use a keyboard, some of us have arms and legs. I can not remember things from one min to the next, can't walk more than 15 meters as can not breath due to my lungs being crushed by my liver. Oh & could be dead soon. But they know it all. I think this is the worse disability we could have, No cure yet, and just pray you might still be here next weak. Sorry you can guess I have strong views Ha! x

[nellytwist]

aww thankyou very much, yeah my husband to was on ESA and been put on a fit to work!! it is disgrace full, he is very poorly and blooned up were all his organs was squashed and could not breathe! he got disgnosed with cerroshis about 10 years ago, and kept drinking, he stopped 3 years ago ghey said he add a dize of a 5p liver left, but already done the damage, so now he needs the transplant!!!!! thankyou x

[Ruby52]

Sorry to here you news my son lived with Hep c for 15yrs in that time got cirrhosis we spent a week at kings Hospital (London) but he was turned down due to having Hep c, he was 29yrs when he him passed last Nov 2012. Having said that they say it is a lottery if you get put on that list or not. You are very lucky that he has, it was meant to be. I wish you both the very best, hope all go's well. And you keep strong to x

[nellytwist in reply to Ruby52]

Hi ruby, it's Annmarie, Neil's partner, just a update to tell you, that Neil passed away the 3rd June, Thankyou for asking about Neil xxx

[Bigplanet67]

It frustrates me totally. Dr don't seem to get liver disease at all and dwp are just wanting to move numbers around. I want to appeal my decision but don't really have the energy to do so. I get upset hearing people's stories on hear as it concerns me that there seems to be a black hole in the system both with nhs and dwp.

[nellytwist]

aww ruby so sorry for your loss my husband as 6 months at least, but doctors are saying it could be years, i have offered to see if our bloodgroup the same and give him half of mine, not many people know that this can be done. as it costs the NHS to much mony (joke) messing with peoples lives!!!! Ffs how can you put a price on a life!!! AAAAAaaagggghhhhh!!!! SORRY!!! as i was saying about giving half mine as liver regenarates back. but as i got one kidney they say they cant, bloody joke!! thanks for all comments and well wishes!! my self and my husband wish you all well xx

[nellytwist]

ment could be years for the tramsplant!!! sorry xx

[paulivicky in reply to nellytwist]

hi nellytwist,ive all of the above and a few more bits,but have just been awarded dla,but cnt get esa coz ive been selfemployed all my life,but ive now been to see my local mp, who is fighting my corner,if you ring benefits advisor they can send you relevent forms for hosp expenses etc,but iv also just been put on the transplant list at jimmys in leeds,and iv had this for 20yrs pluss, so there is hope there, iv only just come onto this forum myself in the last month or so and it is fantastic for imfo and advice just stay positive i know it is very hard at times,all the best paul

[nellytwist in reply to paulivicky]

hi paul, it is bloody disgrace full what they do with people with cronic liver disese, and hep c. some hospitals wont give the poorly prople who ave hep c a liver transplant as you can see buy ruby comment. it is awful and feel for her so much. my husband should ave been on list 3 yesrs ago. but they thought he ead still drinking which he was not. now they saying they dont know if his heart will take the op with all hus organs getting crushed through the liver. i hope all is well for you and your family, and everyone that commented thankyou cxx

[Hidden]

Hi all - I have some tips and questions for all x My husband 46 has Hep C geno 3 (failed treatment at 29 weeks due to awful blood results) - Advanced Cirrhosis - Oesaophageal varices (recently had 6 banded) - sudden onset (whilst on interferon treatment) insulin dependent diabetes - inlamed Gallbladder ? gall stones and now encephalopathy - he is not listed yet but hope fully soon - he was self-employed and got ESA for a year and was placed in the `work related activity group` and they paid him for 52 weeks - I appealed against the decision (just one form) and they changed it and he still continues to get this !!!! so definintely worth chasing it up - also DLA - I applied for my husband and we get highest rate of both - you have to word things correctly (I am RN) - if anyone would like any help you can email me [e-mail] xx and Nelly - if you are awarded the higher level of mobility you can get a car on the mobility scheme - they pay tax and insurance - you just have to put petrol in and also most hospitals should do a `scheme` whereby you can get transported to the hospital and back for a lower charge or if you are with your husband then it would be free - i hope this is of some help to you and I wish you all well xxxxxxx

[nellytwist]

Hi all, just an update, My husband Neil passed away in JUne, The hospital said he would be put on a transplant list, but apparently there was no transplant list for him, it is awfull what they put Neil through, I sorry not been here, but thought about you all who was following Neil's story, Thankyou so much for those who sent him well wishis, hope your all doing ok, Thankyou again Annmarie xxx

[dizzime]

Yes you should be entitled but whether the powers that be say he is is another thing. You have to get help to fill in the forms, have you got a local CAB office near you to help. Also if you go to the HEP C help line I think they will be able to help you too. Good luck with everything it is a mind field but keep om going xx stay strong and keep positive