I miss my dad so much😓: Its been near... - British Liver Trust

British Liver Trust
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I miss my dad so much😓


Its been near 7 months, since I lost my dad from hepatic encephalopathy stage 4. What I seen on that final day still haunts me, i cant seem to get by it at all. Decomponsated Liver cirrohsis, is a very cruel condition. Once it progessed, day by day, my dad just started to waist away, infront of my eyes. Although off drink for 7months, his hepatic encephalopathy had progressed in stages, eventually preventing a transplant. On that final day, the toxin levels in my dads system, were the highest, his consultant had ever seen in his carreer. In the end, it was like watching someone who had been poisoned passing away. The seizures were that severe, not even being put under general anesthetic would stop them. Has anybody out there had a loved one pass from the hepatic encephalopathy from decomponsated liver cirrohsis. Usually lactalose and rifixamin keeps it at bay, but for an unknown reason they didnt work for my dad.

19 Replies

I lost my dad when I was young. His was a heart attack but I can emphasis with how you are feeling. I'm not gonna pretend it's something you'll ever forget or completely get over but it gets easier. Make a scrap book of pictures and music and all the things your dad loved.

My deepest sympathies to you. Stay close to your loved ones and they'll help you through.

Thanks so much, its hard going but i am keeping close to all i love right now, they give me a reason to try and stay strong.

This one was tough for me to read. I myself have hepatic enchalopothy, from a tips shunt gone awry.

It was my greatest fear, getting that, iand it happened.

Mine has been so bad that I sometimes have episodes that last 48 hours.

I had been told that prior to my first transplant, that I had no HE, even with massive ascites...so they felt confident I would not get it with the shunt that had to go in, because my liver is failing. Now I'm back on the list, waiting for two organs..a liver and a kidney.

I had no idea that they could take you off the list because of HE.

It sounds like a horrible way to die..but it's a terrible way to live, also...not knowing, every day, when you'll wake up or when, or if.

So sorry for your loss and pain.

Take comfort in the fact that he is n longer suffering..and that he has found safe passage home.

There's a sense no I love..the tall ships. Google it. It's by an Irish band and it's very healing!

Thinking a good thought for you!


Im so sorry to hear that darling. My dads episodes were lasting about 48 hours aswell. Then they started to get worse, lasting up to 6-8 days fully passed out. The more frequent, they were happening, the more weaker my dad was getting. The hospital inwhich my dad was in at the time, kept sending him home as soon as he came out of one. He lasted no longer than two days, until he was back in. I dont know to this day, why he was never offered a shunt but i know that if they would of acted quicker and listened to me, when i told them his condition was getting worse he might of stood a chance. He was passed from pillar to post. On the day he passed his liver was still damaged but ok, so was heart kidneys etc. He fell into a coma that Saturday night and was incubated in ICU. ICU failed to do enemas for the 3 days resulting in a massive toxic built up. That wedensday the seizures started and it was horrific and they wouldnt stop they just came one after another, it was heartbreaking. For the few months up to that, I watched a proud man that i loved with all my heart, waist into nothing. He was broken, he was the most funniest and caring man you could meet and that stripped it all away from him bit by bit. I seen how he struggled and how he was afraid to sleep because he didnt know if he was going to take another turn. Its was a horrible few months. Thanks I will deffinatly look it up. xx

Sounds absolutely horrific; and awful you saw all of this; losing loved ones isn't something people usually get over; but in time, you learn to live with the loss ; i was thinking about my own mum this morning, and how she passed and it got me sad (that was over 3 yrs ago) . So, its still early days for you, but you will move forward and go on and live your own life. Time is a great healer, really its true; you will have good and not so good days; but try to think of the more happier times with your dad when he was well. My dreams are of some comfort to me (i often dream of my mum) Hugs xx

wrightr444 in reply to susieanna

Thanks sweety, i think because of what i had to see it makes it very hard to get past it, but with a day at a time and full focus on my kids i hope soon it will ease off 😘x

susieanna in reply to wrightr444

Your welcome. Oh yes. Of course. That's understandable. Take care. 😊

Aw darling, I can still see my hubby in his last hours and it haunts me too. I am so sorry your experience of seeing your dad passing away was so traumatic for both of you.

I don't know what medication he was on in hospital but the doctors sent him home with nothing. He told me nothing worked so maybe like your dad the medicine didn't help.

We're at 11 months since he died now, our kids are still not back in school - home educated - thankfully they didn't witness their dad's death, they went home at around 3am and he died at 10:30am, but it absolutely devastated them both. However, both are starting to recover...

Give yourself time to grieve and space too. Remember your dad loved you xxx

wrightr444 in reply to Geffy22

The lactalose just gave him constant nausea and rifixamin didnt help him at all either. Seemed at the time, we just kept hitting a brick wall. I tried in vain to do all i could. Its the first time in 29years i dont have my dad in my life... and its exactly now when i need his hugs the most but hopefully things will ease a bit. Its been 6months. xx

Geffy22 in reply to wrightr444

He is with you hun, he cant hug you but his legacy is you.

I still ask my dad for guidance after 2 years, he always answers me because I know what he would say to me.

It's so soon after your dad passed away and it will take time, so be kind to yourself.

Im so glad you have loved ones around you xoxo

I think we can say a tough read.

my mrs is hospital now with HE and has a tipps which has worked well for about 10 years till now, and are in mouth 3 of the proving 6 months for transplant from her daughter

My dad was 7months off drink and because his HE was getting worse, they written off about a transplant but day by day he was getting weaker and as you know its a long process. So in the end he didnt get one. I also asked the consultant could i donate but unfortuantly they dont do that proceedure over here.

My dear my heart goes out to you. I am just beginning this terrible journey of watching my husband suffer the side effects of toxin build up. This community site has been such a support to me and I thank God I discovered it. Most people I speak to have no idea how totally devastating this illness can be. I can only offer you a virtual hug and my condolences for your dear dad. Im sure your dads final days were made easier knowing he had such a caring daughter by his side.

wrightr444 in reply to alesan

Thanks so much. I joined this in search of any advice on how to help my dad, its been so amazing to talk to others that have went through what i have. Feel free to contact me anytime for a chat. Its a long and hard heart breaking road and only people that have been were you are, truely understand what its like. Stay strong xxx

I am so sorry for your loss. I am going through the same grief, I lost my dad to esld in oct. so it has only been 4 months and I am so sad and I miss him so much. I cry once a day. I too watched my dads health decline, I was my dads caregiver. I agree with everything you said and know how you feel. I see a therapist once a month and I just tried my first Al-anon meeting. I too feel very affected by what I saw and went through. It is an awful way to go and watch your loved one slowly decline. Please reach out to me. You are not alone. I see you said you are 29, I am 32 and still can't think about how for the rest of my life I won't talk to my dad again. Every once in a while I listen to a voicemail from him. Please take care.

wrightr444 in reply to Lperica10

So sorry to hear that, i have full understanding of what your going through. I constantly am watching videos just to hear his voice. Somedays i just dont know if I can get through it. The pain is so intense. I try so hard day by day to stay strong but it drains me. Its been six months and i too still cant imagine the rest of my life without him in it. He was only 52 and the best dad a girl could ask for but on the other side his own worst enemy. xx

Lperica10 in reply to wrightr444

Yes I know some days the pain is worse than other days. When I am at work my mind is busy because my job is very busy. But I just miss him so much. Some times he is in my dreams I love that. My dad struggled for years with alcohol addiction. My sisters and I tried everything over the years but he didn't stay sober for long when he tried. He was 63.

It's heartbreaking reading your post because you can sense your hurt, pain and confusion. We would all feel the same especially to see your father in that condition.

I am hoping I can give you a little peace by telling you he wouldn't of had a clue what was happening, I suffered with severe H.E and had for several days at a time I was always hospitalised and I would wake up one morning and confused as to why I wasn't in my own bed. I didn't know who my family or husband was and I really don't know what I said or did even to this day it's like everything is wiped. Everyone around me had to fill me in on what happened.

Even before I got transplant and I was in hospital for 3 months before I deteriorated that much it's a blur to me.

I hope you find peace soon with your loss xxx

wrightr444 in reply to jojokarak

Thankyou so much, dad was much the same as you have described, it was hard on him and my family to see him that way. Its a horrble illness and my heart and soul goes out to anybody who suffers from it. xxx

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