help?

[Harriet-sarah]

I’m 41 with ELD liver disease waiting to see if I can get on transplant list. I’m looking for mental health support with this as I could be terminal if I don’t get the transplant, and I’m doing everything on my own setting up end of life (just in case). Other charities can’t help me cause they just look after cancer patients. My adult mental health team only deals with my other mental health problem (Emotionally unstable personality disorder and PTSD) they are limited to talk to me about palliative

[Readlots]

Hi, welcome to the group, I’m sorry you’ve found us at such a difficult time. There are lots of others on here who have been where you are now and I’m sure they’ll be able to give you hope re the transplant.

I think it’s really good that you’re preparing for either eventuality - I always like to have a backup plan myself. Don’t like to get caught unprepared! Have you contacted your local hospice? They are brilliant at helping people get the best out of life and have really good mental health support. People think they’re depressing places but they’re really not.

Good luck!

[BritishLiverTrust3 Administrator British Liver Trust]

Dear Harriet-Sarah,

If you [are in the UK and] would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust

[Harriet-sarah]

read my story I’m exactly the same, at the point of writing wills, thinking about funeral plans to be prepared it’s horrible doing it on your own, because people around me say aww you won’t die! When really it is a reality and I’m trying to be practical

[Clio5678]

Welcome to the group. You will find lots of support and advice on here from people who are going through the same thing either themselves or with a family member xx

[DD75]

Hello Harriet-Sarah,

I'm so sorry to hear about your current situation and your struggle to get support have you tried your local hospital palliative care department for advice on support groups. They may be able to help or go to the hospital PALS service they may be able to help you.

Other option is your GP can they not refer you to someone ie a specific counselling service that will support you through this if you explain that your MHT are limited in helping you with your current situation.

Thinking of you.

[Yellowsydney]

Hi, If you are in contact with a transplant team they offer mental health support. Good luck❤

[Ewife]

Hi, our local hospice has been fantastic to us. We were initially put in touch due to a couple of family bereavements ( not related to liver disease) but we were all struggling massively, with my husband on the transplant waiting list too. We were allocated a bereavement social worker and she saved us! She not only helped with the grief, but is still helping us now with my husbands diagnosis - same as she does with families dealing with cancer. It might be worth phoning round a bit to see if you can access anything like this?Atb,

Ewife

[Harriet-sarah]

I will thank you, but my trouble is because I might survive and it’s not cancer, I don’t tick their boxes, I’ve argued saying that what’s the difference in somebody having cancer who could die if they don’t have chemo? They all agree with me but says there is just no service for it

[AyrshireK]

When you say waiting to see if you can get on transplant list have you been referred to one of the transplant units for assessment? Usually between referral and first clinic apt. it's not too long a wait. If you seem to have waited a while, chase up andake sure referral has been done.Once you attend t/p unit they have social workers and mental health workers as part of the team. Assessment varies in each unit but involves a barrage of tests, chats and consultations which work out if you need a t/p, if you are fit enough to have and your level of need/priority etc. A multi-disciplinary team then make the decision on listing.

I wish you the best of luck.

Katie

[Harriet-sarah]

thank for that info cause I’m a bit lost. What’s happened to me is when I was in hospital the consultant asked how do I feel about a transplant? I didn’t think they would either consider it. But I said yes whatever it takes. Then I got discharged, 2 months later I saw another consultant and I told her just what I said. She said it’s all about whether I need on which yes certainly I do and then weather I’m suitable for one. She said at the moment I need to get as strong as possible, she needs evidence to give to the panel, she said my bloods are improving but need you stronger cause she said if she puts me forward right now they will turn me down flat. Also, to prove I’m not going back on the drink, my alcohol expert is coming with me to vouch for that, and she can see from my bloods I’m not drinking. Next appointment is in May and I’m hoping she will have enough evidence to put me through, then it’s just waiting

[AyrshireK in reply to Harriet-sarah]

Are you already being seen at a hospital which is a transplant one? These are situated at Queen Elizabeth Birmingham, Freeman in Newcastle, St. James' in Leeds, Royal Free and Kings in London, Addenbrokes at Cambridge and Royal Infirmary Edinburgh. If not then you need a referral to your closest one, obviously your local consultant needs to explain your referral to them but you only get on the t/p list after a full, liver transplant assessment.

[Harriet-sarah in reply to AyrshireK]

it will be Queens IF accepted at the moment I’m seeing my consultant at New Cross, they really want me as fit as possible before they refer me. I’m hoping that in the last couple of months will be enough evidence that I’m strong enough and proof I’ve given up the drink, that’s why my alcohol worker is attending with me, to support this evidence.