Sorry to ask for help but some days I am at my wits end caring for my hubby, he has been home about 3 weeks after 10 weeks in hospital and this week we went to Kidney specialist they are of the opinion he may not need simultaneous kidney as well as Liver transplant after biopsy they are erring on the side that the kidneys may recover with new Liver, of course there is no indication on timeframe and he is on the waiting list for Liver. He had a difficult time in hospital with numerous infections and lots of HE but terrible halucinations too, he has to have ascetis drain every couple of weeks or so and he is now calmer and more lucid but still jumps down my throat at the slightest thing and sometimes is honestly down right nasty to the point of me wondering who this is! he says things like his life would be ok if he didn't live with me etc and worse but then a few hours later he is calm and back to near normal whatever that is these days!
He used to get this way when he was drunk and having now been dry for 6 months I just find it really difficult sometimes. Sorry if this is overshare , I am just on my own and this forum has been my only source of sanity in the 6 months since his diagnosis, so I just wonder if anyone has experienced this and any tips on coping strategy.
Thank you for listening
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MilliganHorse
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Hi, I can’t comment because I don’t have any experience of this myself but I know there are others on here in the same boat as you. You are not alone and your feelings are normal snd totally understandable. I’ve read other posts on here from people saying the same thing. It’s really hard caring for someone with HE and on the transplant list.Im sure they will come online soon and have more helpful advice. Hang in there
Hi . My partner of over 15 years was diagnosed just over a year ago . He initially blamed me for everything , even though he's been drinking since way before we met . He told everyone I was to blame including some of my family and our friends. He made me leave our home . It was very sudden after a day of being upset and saying I deserved better and he didn't want me to leave him . I had never thought about leaving him . I came back after a few months and he said he would try to get better and that he realised he was wrong and his issues were nothing to do with me . A year later and he's still drinking , he has stopped several times. I now have days of him being upset and angry but not alwaus with me, usually other people and then suddenly whatever has happened that day it's my fault again. I got blamed for him not going somewhere yesteday as I was driving him and he said I would have made him late. We were not late, I was ready to go and I told him I will not take the blame for that or be his excuse for not going . I usually walk away, go to another room or sometimes go for a walk just anything to stay away . Then he calms down and things are how they should be. Talk to friends or family if you can . That's not aways easy as you don't want them to think you are being bullied or miss treated .
I think this is typical of the condition . It's not right at all but also try and talk when he's calm and tell him how it makes you feel . He will probably understand when he's calm . Get some outside support yourself, either counciling or join a support group for families.
Look after yourself too, go out with friends or alone to get some space . Get your hair or nails done or go shopping and just take time for yourself. Do stand up to him but also try to see that the illness is causing some of his behavior and give him some attention too . He may need outside support too which my partner is trying to get but it's very difficult on the NHS, almost a postcode lottery .
It's really not easy and I do feel your pain and know how upsetting it is and hard on you . I take each day at a time and enjoy the better days together, but most importantly look after and consider yourself x
Oh Wow what a lovely message in terms of all the things I am experiencing and have experienced over the years so that makes me feel I am not going mad and I am not alone. We don't have any friends here in France where we retired to and he has only a couple of friends himself and fell out with his familly years ago so I joined this forum for which I am very grateful and also now go to an art group once a week which is really helping me to have something to look forward to and 3 hours of respite. I think I just got a bit exhausted by 10 weeks of travelling 115k a day to sit with him for 5 hours and some visits were terrible and some ok. I too am very grateful for your bravery to speak up and reply giving me support it is very important to share. Take care of you too xx
I've had a liver transplant but was very ill beforehand and spent months in hospital. During that time I saw other patients whose behaviour varied dramatically as a result of their symptoms and medication.
I think I'm a decent person. I was never abusive to anyone. But once I'd recovered my wife told me about me inappropriate comments to the nursing staff. Caused a lot of embarrassment. But I recall nothing.
It's these details that we don't really talk about that make things so much worse.
If roles were reversed that could be you.
I will all pass. But tough on you. All part of the challenge I'm afraid.
I've been through a difficult time but I think my wife's had it worse.
Thank you so much for taking the time to reply and I am sure that we will work it through it's so tough on loved ones but that is the same for so many illnesses I am sure.
it’s a massive challenge for you both. I’m sure the relentlessness of the situation is hard to bare at times both physically and emotionally. I had dialysis for my kidneys while waiting for transplant and ended up with just liver TX as the dialysis kicked started the kidneys. I also had hallucinations and was put in a medically induced coma for encephalopathy which then went to acute liver failure. I assume he is also having regular blood tests but if he is showing more signs of jaundice and confusing mood swings, I’d phone up the team or go to A&E to check that his Liver Bloods are not too high. For yourself , I’d ask someone else to visit him to give you a break. Maybe one of his friends can spend an afternoon with him and you can spend an afternoon with one of your friends? It’s important for you to have time out to do things that you like doing and to have a good moan with a non judgemental friend x
Would you not like to speak to your liver team coordinator and see if you can help through them even to try and get him mental health service support I know its very difficult these days getting that because if he has someone else to talk to it may clam him, I myself had lots of mental health issues but I found there help very good because you can blabber as much as you want and they listen I don't know and yes I suffered greatly with HE myself but half the time I never knew what was going on.
Hello. I had a liver transplant 8 years ago. It was also from drinking. I remember in the hospital before the transplant being an ass to anyone and everyone. Some doctors would send interns to do the dirty work. I also vividly remember the hallucinations. I tried to call 911 because the monsters were trying to take my liver. I wouldn't let my mom come near me because she was working with the robot like monsters. All happened in 3 day period before I was supposed to die. I'd get a counselor for transplant patients, they may be able to help one or both of you.
Also, find out what immunosuppressant they will be using and learn everything about it. You need to understand the side effects before you sign off. People here are great resources.
Hi MilliganHorse, I've been through this from your husband's end, it is difficult, I can't explain how hard these things hit you, and the toxicity in your blood (with a non-functional liver) makes you act/speak in ways you don't want but can't help. Celebrate every day, they may be numbered, actually living the best life you can and repeating 'it is what it is' is the only way to keep strong. He will get used to the drains, I don't know the specifics and I'm not qualified to advise but suggest you/he talks to you consultants about TIPS (it's a liver bypass surgery that worked for me, probably only temporary but it helped a lot - no more drains). I hope you guys get to a good point in quality of life and happiness, but it may not be easy. I think one of the hardest parts was getting through the anxiety this causes, I wish you and hubby the best. Thanks, Jason
I had a liver transplant a while ago. I cannot give you any advice I’m afraid but really admire you and all the carers of people with HE and the other problems related to liver problems, wives, hubbies, parents and siblings not forgetting the kids. I don’t know where I would be without the love my kids & hubby
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