how life can change

[Lippy42]

in a nutshell in the space of 2 years I found out some devastating news from my husband which explained his drinking then found out the drinking was worse than I thought then was told he had decompansated alcohol liver disease and now on the transplant list after all this I had a melt down 8 weeks ago handed my notice in at work and really really not interested in anything other than getting hubby better but inside I'm crumbling .I miss our life what was. So you could say todays a bad very bad day and hopefully tomorrows another day his illness has had a massive impact on everyones life .it's bloody hard so for everyone out there struggling I'm with you if any saying was true then "it's OK to not be OK "today I'm not OK....

[AyrshireK]

Hi Lippy, hope you are alright. Hopefully Ste and you won't have long to wait till his transplant comes along and you can start to regain and rebuild your life and hopefully he can tackle the issue that drove him to drink and once he's on the road to health and recovery you can make the most of the rest of your lives.

Hang on in there.

Katie x

[Lippy42 in reply to AyrshireK]

thanks katie some days feel heavier than others. I'm trying to stay strong but just having a bit of a wobble .take care

[Zechariah123]

hi Lippy

I’m happily married woman with a fabulous family. I found out just over a year ago I have liver cancer and I’m waiting to go on the list. I made a foolish mistake over 30 years ago due to a traumatic experience and for that I’m paying dearly now. My whole world and that of my family was turned upside down. I also gave up my job.

I’ve been to the darkest places that I didn’t even know existed…but I am learning to live my life day by day and enjoy life experiences in my life again as they happen.

I know positivity does not cure me but it is helping me to cope. I still have to deal with the anxiety and fear as it is real but it has eased.

Give yourself sometime to come to terms with the shock of the diagnosis. Being on the transplant list is getting another shot at life. There will be good times ahead although it is a long journey.

I hope you are getting support, if not reach out.

Lisa x

[Tia2021]

Sending hugs and strength, I can truly feel your pain, I pray a transplant comes through quickly for you both xx

[Lippy42]

i do have great support but sometimes when night falls my mind runs away with itself .a hot bubble bath might help. Hope your doing OK take care

[redpoint72]

hello love. Its very hard times... it is ok to be having a completely rubbish day....I get that duck. More often than not,there is some trauma to someone's life, that made us drink like we did. Alot of folk don't see that....just judge. Let's hope a transplant doesn't take to long. Maybe your husband can seek some advice for counciling,etc.....its helpedme tremendous....,please try. It is long slow journey....liver disease.....and we have no choice that its life changing. Better days will come,may be not tomorrow,but they will . Your husband is lucky to have you, you sound a caring lady....I went through things on my own, not easy.

hopefully things will improve.

take care love. Chris

[MrsWorried]

HI there, I totally get it, life changes and you're not in control. You're worried about, cross with, and possibly confused by the situation and wonder if you could have done anything to prevent it.

Definitely worse at night. I had a mini meltdown yesterday too, it's allowed!

Hope the hot bath worked xx

[Lippy42 in reply to MrsWorried]

morning ..another day..hope your holding up , decided last night to put a plan in place we can't do much yet but one day we will so I will dream of that day. Ste wants to go to france once he's better so I'm going to throw myself in getting to know france a lot better where we could go whst route to drive..then day to day start having something to look forward to either lunch out or catching up with mates .we have literally stopped living which I realise is stupid but easily done so yes the bath must have worked cos I'm more upbeat today 😊 thinking of you .take care 🥰

[MrsWorried in reply to Lippy42]

Vive la France! If you have a shared plan that's wonderful. We'renot there - yet!

[Yellowsydney]

Hi, sending you hugs and hope things begin to feel a little bit better soon. Have you spoke to his transplant coordinators they are there for you too and can access counselling for you and your husband

Hilary

[Bs1524]

aww Lilly so glad you are feeling a bit better and planning ahead. Life can change in a second, we can’t control it we can try to control our reaction but that is far easier said than done isn’t it? Sending my best wishes and the biggest hug xx

[Cat-B]

hi you poor thing, yes it’s that it’s ok, the whole situation sounds extremely stressful, if it helps I was diagnosed with decomp 8 years ago, I didn’t want a transplant. It’s a long slow journey but it’s possible if you’re hubby fights very hard and never drinks and follows all the rules that livers can repair sufficiently to tick along. That’s your husband’s job ( no one else can do it), you need to focus on your wellbeing and ensure you make “me time “ every single day and at least a couple of hours. There are support groups and the BLT have nurses you can talk to about anything. Good luck and hopefully tomorrow will be a better day.

[Jesue]

I truly know how you feel and send you hugs.. I spent 6 months feeling like you but unfortunately my beautiful husband didn't make it. He had decompensated liver with ascites and HE.

Lactulose didn't work so he needed enemas but wouldn't have more than one a day despite being told he needed 3 bowel movements a day. He felt embarrassed and hated this daily procedure.

He took the Rifaxamin and Thiamine but his sodium level was too low to cope with the diuretics so continued to need regular drains for the ascites. The liver team arranged to fit a rocket drain to avoid the regular hospital visits. He was really keen for this but unfortunately his body couldn't cope without the albumin infusion which is given with drains as standard in hospital.

He continued to become confused and he was no longer the man I had loved for the last 49 years. I understand what you mean by longing for the life you had together and I too felt I was crumbling inside. I was angry that he had brought this on himself through drinking but couldn't bear to watch him in distress.

Lack of appetite continued and he became weaker. His skin was so thin it bled very easily and he was extremely itchy.

He really wanted to get better but didn't want to go back in hospital. However the district nurses felt he was too ill to remain at home and managed to get him transferred to a wonderful hospice at the beginning of September. The staff there were amazing and and tried hard to get him to eat. Some days he ate well but this illness is so up and down that my hopes were raised and the next day totally deflated again.

The worst part was he was unable to speak in the last couple of weeks,except an odd word. He was only able to nod in response to questions. I assume this was the HE taking over.

(He couldn't go on the transplant list because he had had treatment for cancer within the last 2 years so we were told he had 18-24 months.)

Unfortunately he couldn't fight any longer and sadly passed away on 30 September , just about 6 months after our prognosis.

I feel foryou on the bad days but keep yourself strong and fingers crossed your husband will get a transplant and you can get back to enjoy life again.

Don't give up and message me if there is anything you want to ask.

Sending

[Readlots in reply to Jesue]

I’m so sorry for your loss. It’s lovely that you feel able to come on here and pass on your experience to others.

[Lippy42]

 heart felt wishes to you sending you a big hug I can't even imagine how you are but hope you also have love and support around you having a cry for you and wish you well .take care

[Readlots]

Hi Lippy, hope you’re having a good day today. I find I can cope with most things if I have a plan and France is wonderful. We stayed in a lovely cottage in The Dordogne many years ago - I love the Loire too. You could even start learning the language! Enjoy the research 😊