Update - partner in ICU with ARLD

[ThisIsUsRRR]

For those of you who were kind enough to follow and comment on my recent posts, I have to sadly tell you that my 43 year old partner and father of our 10 month old passed away from multiple organ failure caused by decompenstaed ARLD on Saturday. He was so sick the Royal Free wouldn’t move him to their liver ICU or put him on one of their transplant trials. Thank you for all your support. I am numb and my heart hurts more than I can bear

[Lils2019]

I am so so sorry to be reading this, words are not enough right now, sending you strength and love at this sad, and difficult time.

Thinking of you and your family xx

[redpoint72]

love,I'm so so sorry in reading this...that is so very sad. My deepest condolences .life is not fair. Please look after your self,and the little one.

thoughts are with you. My best.chris.

[AyrshireK]

I am so saddened to hear this. No words are enough. What an absolute waste of a young life especially in light of him having his new baby and you in his life. You must look after yourself and hug that little one close.

My thoughts are very much with you. Much love.

Katie xx

[Foxdud]

So sorry for your loss , terrible news sending love ❤️

[Clio5678]

I’m so so sorry to hear this. Look after yourself and your little one ❤️Xx

[Aotea2012]

It’s terrible to read your post, I’m so very sorry. Please take care of yourself it’s really important.

[Millie09]

so so very sad.. no words can even begin to describe the pain you are going through.

my deep condolences on your loss ,

taken too soon

I pray you find strength and comfort knowing he is no longer suffering

this disease is and can be very cruel

sending you ,your Baby and extended family ( hugs ) and prayers ❤️

Linda x

[ThisIsUsRRR in reply to Millie09]

I’m holding on to the fact he is now at peace with no more mental and physical pain. I think he was tired of everything and couldn’t fight anymore. I had the privilege of being with him at the end. Thank you for your kind words

[Millie09 in reply to ThisIsUsRRR]

absolutely... and you are so so very welcome..

My verybest wishes linda ❤️ x

[EmmaThom]

so desperately sorry to hear this terrible news. My thoughts are with you and your family

[MrsWorried]

so sorry to hear this, sending love and hugs

[Sammyjoe2]

I’m so so sorry for your loss, thinking of you and your baby at this sad time. X

[Positive001]

Oh no ! I am so sorry for you all. It really is heartbreaking. In time you can remember the good times you had together with love, warmth and fondness, not dwell on the bad. Till then be strong to help you through the coming weeks and months, one day and 1 step at a time.

My thoughts and love are with you.

Laura xxx



[Louby1954]

I am sorry to hear this. My thoughts & prayers are with you @ this very sad time hugs

🫂

[Rshc]

oh gosh, I have been thinking of you so often, I cannot express how sorry I am to hear this. I can only imagine how hard this must have hit you and with your little one to worry about too. I hope you have lots of loving arms around you and your baby right now. Sending you love and strength. Rachael xx

[LemonMeringue15]

I'm so very sorry to read this. Another needless loss. I know how hard it is to lose the other parent to your child, although our situations are very different.

Try not to overthink about your future. Just put one foot in front of the other and keep doing that. I hope you have others around to support you.

Whatever feelings you have, they are all normal so don't feel guilty about any of them. Sending you strength

[ThreeSmiles]

So sorry to hear this 😕

[NoRainCa]

I’m so sorry I just read your previous posts and aside from his addiction he sounded fairly well? Could have been alcoholic induced hepatitis? Either way, I’ll keep you and your baby in my prayers.

[ThisIsUsRRR in reply to NoRainCa]

Thank you. It has all become a blur so I have some questions for the doctors for my own piece of mind and that is one of them. He had it in the past but no one explained what that meant and if it could become life threatening. I’m not at all questioning the care my partner received

[Ewife]

awful news, I'm so so sorry. Lots of love going out to you, take care and hold your baby a bit tighter today 🙏🤗🥺

[Lantana100]

Heartbreaking to read this post. There is nothing any of us can say but hope with time you find the strength to work through this and make a life with your precious child. We are all thinking of you.

[Doaktir]

I am so sorry for your loss. X

[Jesue]

I am heart broken for you. I lost my husband 3 weeks ago but he was not as young as your partner although I know how broken you feel.

My heart goes out to you and your beautiful baby. Life can be cruel but keep cuddling that baby and keep strong. Huge hugs

[Millie09 in reply to Jesue]

sorry to read of the loss of your husband.

thoughts and prayers

linda

[Browsingquietly]

So sorry for you and your little one, glad that you have each other. Wishing you lots of strength for the coming days, it sounds like you've had to muster a lot of strength already. He's not in pain anymore. Lots of love

[Readlots]

I’m so sorry to hear such sad news. Wishing you strength and love to help you through such a difficult time x

[Kayseylou]

My thoughts and prayers are with you at this very sad time. God’s Blessings to you and your little one xx

[KulG20]

heart breaking post

Am so sorry for your loss

[Mango5cm]

my thoughts are with you at this sad and difficult time .Sending love and to you and your little one . X Carol

[Confused1972]

So very sorry to hear this such sad news Sending you and your baby love and hugs. Our thoughts and prayers are with you xx

[Dogbot]

the wife and I are sending you all our thoughts, as Lils says words cannot express our sorrow for you and your family 💕💕.

Stay safe All

Dogbot 🐶🌈 Dave

[AliceT]

So sorry for your loss. Glad you could be there for him at the end. Wishing you strength and love for your memories and your child.

[Grizz11]

❤️❤️❤️

[LorraineLouise]

there are no words. I can’t begin to imagine the pain that you are in. These diseases are awful. You and your little blessing are in my prayers.

Lorraine Louise

[teletonetapper]

Very sad to read your post. You will find strength from within eventually but my heartfelt thoughts to you and your little boy. So sudden for you and your family. Thinking of everyone. x

[Bibbybob]

so so very sorry ! My heart just sank for you thinking of you !! Love Bibby

[kyia]

I am so sorry for your loss. It is a cruel disease. Thinking of you and your family

[Lippy42]

heartbreaking ..sending hugs so sorry to read this .Thinking of you 💔

[wurzle]

So very sorry for your loss. Stay strong. Holly

[Cornwallgal]

I am so very sorry for your loss.

[mtk0925]

very very sorry for your loss

[ThisIsUsRRR]

Thank you so much for all your support and kind wishes. I’m actually numb. I am behaving as none of this has happened and getting on with my day to day. The first couple of days I was in a daze and profoundly sad and now I’m back to being borderline hyper. I’m quite scared as I’m not sure why there hasn’t been the ‘expected’ reaction. I do refuse to speak in the past tense though and will not use certain words around condolences, memory, death etc., no sympathy cards or flowers are up which clearly is denial. I have also been seeing him daily so it’s almost like a continuation of when I was visiting him in ICU. He is the love of my life, I have known him since I was 16 and we later when we met as adults we were together for almost 12 years. I don’t know how to not be with him. My partner was well cared for by the ICU team but one consultant actually apologised on the day they withdrew support for his colleagues being ‘too nice’ in his absence. I now have lots of questions to clarify the sequence of events and exactly what happened to my partner from start to finish (again I’m not questioning the care). It took 20 minutes for my partner to pass which shows how incredibly sick he was but also shows I was not fully aware of the amount of support he was on! They told me just 30% oxygen and a ‘bit of blood pressure medication’. The one thing that is also sticking with me is one of the consultants also saw my partner as an outpatient 3 weeks prior to this latest hospital admission and told him he’s ‘not the worst he’s seen’ and that he probably had about ‘5 years left with his current lifestyle’. So how can we have gone from that to this? And from compensated to decompensated? And why say that to an alcoholic! Maybe this is misplaced grief but I need answers because I am also now questioning should I have let them withdraw support. I believe there should have been intervention from Hepatology almost 3 years ago when he was first unwell yet his first appointment and Fibroscan was May this year. Thank you again everyone and I’m truly so sorry for anyone else who has and is going through something similar ❤️ 

[Ewife in reply to ThisIsUsRRR]

My heart goes out to you. People will tell you about the steps of grief etc. But there's no right or wrong way to grieve. I believe your mind and brain knows what it needs to do. If you go through a stage where you can't talk in past tense, that's fine - because your brain probably knows it can't process the next step yet. I am a year down the line helping my sister back on her feet after the sudden and unexpected death of her husband aged 47. So so many different steps and stages of processing it all. Sometimes she has been so numb she can hardly remember day to day things - but when she's like this, I'm sure it's because her brain just says "enough for now". She will sleep loads, or not sleep at all, act like it never happened, or question everything about how it happened etc etc. Just listen to your body, don't be afraid of your feelings, you have a right to feel whatever you do, it's YOUR grief. Keep people that love you close. You won't believe how much your family and friends love you, and how much they hurt watching your pain. They will want to help in whatever way you want or need. Please take care of yourself. Lots of loveEwife

[AyrshireK]

What you are experiencing are normal feelings of grief. They say there are several stages which include denial, questioning, anger and more. The Marie Curie page has a nicely worded section on it's website focussing on grief.

mariecurie.org.uk/help/supp...

It's very sad that it ended up this way but you can be assured that those medics did everything in their and science's power to get him through this and they would not have withdrawn support if there was any hope at all, they really had done all they could.

I don't know whether you attended the earlier appts. with your partner or whether he was going alone to them. Often, drinkers will choose their own version of what doctor said and relay that on. No doctor in the world gave him the green light to continue heavy drinking with fatty liver or indeed cirrhosis. The reason his struggling liver failed is sadly because he never gave it a chance to heal.

At some point soon you will need to say your final eartly goodbyes but he will always be with you in spirit. Nothing wrong in quieter times to talk to him and about him. He's also part of your little one and going forward you and your wee boy need to be your focus.

Thinking of you, Katie

[ThisIsUsRRR in reply to AyrshireK]

Thank you so much. I was at every appointment and absolutely no one said it was ok to drink but I’m not sure how you could tell someone they have 5 years to live, why would you say it at all. A month later he died. I have an appointment with ICU and Hepatology next week to clarify everything. Hope you’re well x

[Lils2019]

Thoughts are with you x

Everyone grieves differently, Mine is coming in waves at the moment, it was my husbands funeral on Monday, and it was a lovely service, and I thought I would feel slightly better after that, I actually don’t, and I miss him so much.

I feel like I have been grieving since he was refused a transplant last November and I knew from that point on we were living on borrowed time.

I also wondered about the hospital withdrawing support, but then I went back to the conversation my husband had with his team of Doctors and he told them on admission, he didn’t want to be transfered to ICU or be resuscitated should he relapse, he wanted to be kept comfortable and pain free, and it was about what he wanted not me, or what I thought should happen.

My husbands consultant told us both back in May that we were looking at around 2 years and that they could only deal with the symptoms and keep him comfortable, sadly he only had 6 months, the one comfort I take is that he is no longer suffering and is at peace now. I’ve not sorted out any of his belongings yet, I just don’t feel like I can yet, so that can wait it’s just to painful to deal with right now.

Go with your feelings, there is no right or wrong way to grieve, everyone is different and we all deal with grief in our own way, it’s hard, but you will find the strength to get through this, step by step, minute by minute, day by day. Reach out for support if you need it.

Thinking of you all, take care of your little one and yourself, be kind to yourself, cry when you need to, smile when you can xx

[CHRISR999]

I'm so sorry to hear this news. God bless you all.