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British Liver Trust
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Mental health

Hello all 😊 just wanted to let everyone know I have been suffering with a few problems for the last few months not physically or with my liver but with the acceptance of my new way of life. I hope you know I am not putting my donors gift down far from it I wouldn't be here, but I think the hospital's need to warn us pre transplant that as much as it saves our lives and it is a huge difference but its only a treatment and not a cure which a lot of us think it is ... I have been diagnosed with survivors guilt but I think I am grieving for my old way of life before this illness struck me ... I wanted to go back to work I want to not feel tired anymore and I also don't want people to me me feel bad for the way I am feeling so I just putting it out there if you are feeling down don't put it off go and see your GP and talk to them they will understand and they will help and if anyone says what have you got to feel down about go and tell them to fuck right off!!

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My daughter is struggling after transplant she is missing her old life and finds it so hard how much it has had to change,she is currently under psychiatrists but she isn't an open book so i am hoping in time she will be able to open up,hope you also get any help you need to deal with the psycological side of having a transplant.

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Thank you x. I am like your daughter I am not opening up to the people in my life I don't want to be any more of a burden to them as I have been over the years, that's probably the same reason why your daughter isn't opening up to you but at least she is receiving help and I hope in time she will feel better x I have faith I will 😊

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I suspect that's the exact reason that she doesn't open up,that and the fear of the unknown i suppose.thank you i do hope she does start to feel better it isn't an easy road for anyone x

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Jo I think you have every right to feel down. Thank you for being honest to show others they may also feel that way. I so wish I could wave a wand and make you feel better, as you have spent so much time on here doing that for others. I am vibing you energy and strength and hugs. Try to keep positive- I’m sure you will feel differently before too long xx

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I know what you're saying. I thought everything would go back to normal too but give it some time. Besides I think we can all agree it's still much better than the alternative. Just think of those who can't even get the chance to have a liver transplant for whatever reason and have to keep living with end stage liver disease or worse.

I've accepted what happened to me ages ago. Some things we just have no control over and this is one of them. I hope you feel better soon and still make the most of your new life.

Chin up x

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Hi

My husband had his transplant Nov 2017 so it's all quite new. At first he was elated and euphoric - now it's different to the point that after 30 years of marriage I am contemplating leaving him and I never ever thought I would say that. He is angry and depressed all the time and actually attacked me yesterday. I think we stupidly thought the transplant would be the answer to our prayers and in many ways it has been but not sure how much I can take or let our son see.

He won't admit he needs help but his temper is getting out of control!!

Good luck jojokarak hope all goes well.

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Oh wow I am so sorry to hear that... I can only say because it's still early days for him that it may be the medication and in no way am I making excuses for his behaviour but I have been on some what sent me batty they are very powerful drugs and maybe you could bring it up in one of his appointments I was changed from one to another and felt the difference within a week or two. Steroids which I am still on made me angry for months on end to the point I lashed out and a huge plant pot and hurt myself instead of my husband over the most stupid thing... You also need support my husband was forced by me to seek help about 5 months after my transplant as I could see how depressed he was it was the first time in years he hadn't had to worry about me and it hit him like a ten tonne truck. I really hope he and you seek the help you need and I here if you ever need a chat xx

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Great response jojo :)

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Kimlescam,

I think jojokarak gave you excellent advice. You should call your husband's doctors and let them know about his behavior since his medications may be an issue and on the other hand maybe they can try different meds.

Best wishes to you all. Mary

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So sorry for this, My TX was August 2017 and very quickly felt fabulous, couldn't believe my recovery, but after about 3 months I mentally went downhill felt suicidal it was awful for a couple of months went to my GP who was brilliant and continued my recovery after that visit. Will he talk to you or his GP? Is able to go for a walk or take any other form of exercise cause that helped me immensely. But talk really does help. all the very best and loads of us have always got plenty of times to offer support and love

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Hi All

Thanks for the advice and we are in clinic next week so will bring it up with him and them then. He is currently only on 1 steroid a day and 8mg Advagraf. His trouble at the moment is that a hole has appeared in his wound which is weeping and getting bigger. He had a swab yesterday and is now worried about the results. Thanks all and am trying to hand in there...

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Hi Jo , you would be amazed at how common this is , I know many Transplantees who have or do suffer from some of this . In time in does get easier. Here is a clinical study which may help you see just how normal all this can be . ncbi.nlm.nih.gov/pmc/articl...

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Hi. I am with you on this. I saw a psychotherapist after my transplant and have recently been seeing a counsellor . Most days i am ok and tell myself to get on with it and other days i just feel like ''what's the point'. I too want my old self back and really miss the old days but i have to keep telling myself this is my life now make it as best as i can. It is difficult as i was in full time work previously in a stressful job which i could handle well although always wishing i could retire. Now here i am getting a works pension and wanting my old life. Weird isn't it how things change. I was having a near nervous breakdown on the phone with a bank the other day coz i couldn't fill in a form WTF!! I have anxiety attacks frequently and don't understand why and i think whats happened to me?? I know a lot is too blame on the meds we are given and i am so glad i have a husband who is putting up with me coz the steroids give me a really nasty temper. I wouldn't put up with me at all. Lol. But all in all it is getting better, i am finding things to do and i am busy training for the transplant games so gym and swim every other day. The winter is always the worse and i can't wait for spring so i can get out more, my dog gives me loads of cuddles and my husband loves me so yes there is a point. It will get a bit better JoJo but there will be ups and downs. Keep moving on one day at a time and dont give up. Keep smiling and try and be as positive as you can even on the darkest of days. Xx😁😁

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Very wise words, truthful and heartfelt, thank you S

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This is probably one of the most important posts on this site. We are all grateful for what we have, but its so relevant to highlight that not everything will be all sweetness and light.

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Yes, Tell 'em to stick it where the sun don't shine. Nobody can tell anyone how they SHOULD FEEL & BE cool about it. Each step of symptoms, a diagnosis, a particular treatment in any illness brings a huge range of feelings to ALLOW. I used to push those feelings down with narcotics then booze & it got me a cirrhotic liver & bunged up heart from pickling myself. My psyche just told me a Mediterranean diet has shown good results in relief of depression. All the best wise soul. Scarred, not so scared today.

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I’ve still got cirrhosis but it has also given me the fear of leaving my house by myself. I was never like that a couple of years ago . It’s strange how the brain works.

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I was very much like that a couple of months ago I couldn't see the point of life anymore I was so miserable I would'nt say depressed because depression is such a desperate condition but went to see my GP, she was brilliant, very sympathetic and understanding after I finished sobbing like a baby I took her advice and simply talked to my nearest and dearest about it and it lifted over the next couple of months and another couple of doctors visits I felt tons better so I dont know if thats any use at all to you jo but its all Iv'e got; Had somebody told me to buck up and get on with it my reply would definitely have been FRO!

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Survivors guilt is a common thing to suffer from after transplant. It’s really important for it to be highlighted. For me before my transplant my liver failed acutely and all my focus was on getting on the list, the pain and the transplant. Afterwards I felt so guilty that someone had to die for me to receive my gift hat I felt down for almost a year. I have always appreciate my angel and my gift. With the right help and understanding these feelings do pass. Just realise you are not alone and there are always people here to support you Don’t take any nonsense from anyone, your feelings are perfectly normal.

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