Hi All,
I am really trying to stay on the Positivity Train but feeling the rough end of caring for my husband the past few days, its been tougher than ever, he has decompensated liver, hepatopulmonary syndrome and type 2 diabetes.
Just wanted to reach out to you all and say stay strong everyone, when the times are tough you have to tap into your inner strength even more and keep fighting all the way
Take care all x
I was in your position 7 years ago & know how draining it can be. I had no other family to support me but I got great comfort on this forum. My partner was lucky to get a transplant & things are really good. Stay strong .xx
Hi h0b0
thank you for taking time to reply, I am so pleased to hear your partner is ok now!
Reading peoples stories and journeys on here keeps me hoping this can turn around for the better for my husband and our family, Im just constantly worrying about hubby. This journeys so up and down, one day he feels “his ok” then next day so exhausted and just sleeps, appetite is up and down again, trying to get him to eat some days is a nightmare, ive slept on sofa next to his bed in our lounge this last 5 months. Im past heartbroken, weve been so badly misinformed and let down and were just clinging on to every day we have in the hope he keeps getting stronger. I feel like im being robbed of my husband and our life together 💔 This disease is just awful and tears families and dreams apart 😢
Even on the dark days we have to remind ourselves “Where theres life theres hope”, and, hes still here, hes fought off Pneumonia and he keeps battling on and keeps fighting each and every day ❤️
Take care
K x
Hi wildhorses I really feel for you my wife was my carer and she did a fantastic job of it ,my liver went 20 years ago and through the wonderful NHS and my wife I’m still here talking to everyone. I got my transplant in March this year, still have a few problems but we are getting there. What I’m badly trying to say is stay strong it’s so worth it and if he’s like most men you have know idea how much he appreciates you because we are terrible at telling the ones we love 💕💕.
Stay safe all
Dogbot 🐶🌈Dave
Hi Dogbot,
Thank you for taking the time to reply, your words mean alot, its so cruel watching the man I adore suffering like this, I wish I had magic dust to turn this around for him and get my wonderful husband back to health, hes really suffered this last week 😢
We take each and every virtual step side by side through his liver journey hand in hand, we are a partnership, and, the one certainty in all of this is that I will not give up on him, hes had the most awful and shocking NHS journey unfortunately and been let down so badly its a horror story!
I dont underestimate the enormous lengthy road were on for my husband and our family, my only hope is that we are granted the time to get there, I cannot lose him, hes my life and my world
Best wishes
K
our thoughts and hart go out to you and your family 💕💕
Hi, I’m sorry to hear that you’re struggling. I know from your other posts that you’ve had dietician and occupational health input. Are the community nursing team supporting you? They may be able to suggest other types of help. They are good at being there for loved ones as well as the patient. And sometimes it’s enough just to know that a professional will be coming that day. They might be able to organise some respite care for you. Have a think about it and ask for what would help. Even if it’s someone to sit in the house once a week so that you can go out and not worry. Or maybe for longer so that you can go and have a break. It’s such hard work and emotionally draining looking after someone else long term.
Sending you lots of love. Remember to look after yourself too ❤️
Anyone who comes close to truly understanding what you're going through knows that sometimes there's nothing really anyone can say to help. You just need space to take the "mask" off and be or say what you really want for a bit. This space is perfect for this because it's where there really are folks who get you. So.....simply sending you a big hug and lots of love.Take Care
Ewife
Hi Ewife
Thank you for your kind words, and support, youre so right, I desperately try not letting the mask slip down, but, these past couple of days in particular have been very difficult. Today my husband looks a little brighter again, keeping fingers crossed for an improved day today.
Thank you again
Best wishes
K
I am so sorry things are tough right now. Please keep hope in your heart and reach out for support for yourself too. Try and make some time to do something for yourself and remember that there are stories out there of people getting better even after several years xx
Hi Rshc
I have to hang on to the slightest thread of hope, you all give me inspiration , so thank you for being there to listen, I no longer feel quite ‘so alone’
Best wishes
This, as you say, is a very difficult period for you. You are, no doubt, a very loving wife and your inner strength is very strong. Please seek help in getting support for yourself also even if only for a few hours a day or week. Thoughts and hugs to an extremely caring wife. x
thank you teletonetapper,
This forum is a great inspiration, I no longer feel so alone with my husbands battle and slowly gaining in confidence to reach out and ask for help/advice 🙂
Best wishes
so sorry to hear you are having a tough time - please remember to take on board your recommendations for others - be kind to yourself
thank you so much for taking the time to reply, means alot
Hang in there. Good days and bad days. Not in your challenging position but it still gets tough. ☀️☀️
I have always looked upon those special people who stand by and care for a loved one, partner/spouse as being the unsung heroes of any person’s liver journey. After all, they are on this journey too. They share in the pain, worry and anxiety.
They are the ones who put up with all the verbal abuse and weird behaviour that goes with HE. The frustrations and difficulties, the learning and understanding that a person has now taken on. It’s so easy for someone to just say, “That’s it, I’ve had enough, I never signed up to any of this, I’m off”.
But those people that stay and offer care, love and support deserve to be recognized for their dedication and commitment to care for others... You are all indeed heroes.
Thankyou.
Hi Richard-Allen,
Thank you for your reply and kind words, they mean alot 🙂.
However long this journey is and whichever roads we are put on, im right here by my husbands side holding his hand and taking every step with my soulmate, he keeps on fighting and I refuse to give up hope even on the real tough dark days, somehow I just dig deeper still, we will get through this snd to the other side, I have no idea how, but, we will……..where theres life, theres hope ❤️
Best wishes
K
Thinking of you, been there, looked after hubbie with decopensated liver. It's hard work and thankless most of the time. Rant away on here, there are people who understand. But give an hour to yourself each day if you can, escape into a book, walk, gardening that's how I kept sane. 💕
Hi Oldbits,
Thankyou for your reply, it sure is a tough journey, made more difficult when there are more downs than ups of late, im battling the food intake (yet again) its like im a broken record!
I so wish I could just make my soulmate better, I am past heartbroken inside with whats happened, yet, have to put on this brave positive face for him and our children every day, when I really just want to cry scream and shout at times.
Best wishes
Hi wild horses
Sending a huge hug and strength to keep going. Its heart breaking , I know. We have a teenage daughter and it is hard to support them and look after someone else. I told her everything eventually and she started to help me. I did scream and shout too but he has no recollection of me doing it. I was so angry that our future plans where not going to happen and I couldn't think of a future without him.
I hope you can find something to tempt him to eat, I guess anything will do when they're not eating. (custard and icecream worked for my husband) We sat and watched his favourite films, well he fell asleep a lot but it didnt matter it was time spent together. He doesn't remember a lot from then as he had HE.
Had you thought about contacting the 'hospice at home' to give you a couple of hours off a week? They look after serious illness aswell as terminal, I had contacted ours but didnt need them in the end as hubbie started to get better. They offer a lot of support especially when there are children in the family.
Look after yourself too, you are even more important now.
Love and hugs xx
hi Oldbits,
This is exactly how I feel too, im fighting clinging on to everything! Im so angry that our future is in tatters, so hurt weve been so badly let down by the hospital, (we were told “unhappy liver and may need couple of drains”!) if i lose my husband, I lose my whole world, and, “our home” i’ll have to give up living here and will have to go to live with my mom. I cant get the fears out of my head even though I keep trying to push them away, when im so tired they come flooding back.
Im trying so hard to keep positive and hang on to every thread of hope! You all inspire and keep me going, thank you for reaching out, im so grateful 🙂love and hugs to you and your family, stay strong xx
I don’t no how they can say that I am lucky enough to have consultant that tells you the truth and she says two drains is want I had any is dangerous because of infection and that she said no more if possible I hope with all my heart it will start to get better soon because I no it’s hard for no just him with all my thoughts
you have a heart that only a few people ever can have
Hi Charlie15melissaabb
Thankyou, very kind words
We have to stay strong for our loved ones, we walk alongside them on the same journey they take, and, feel each and every twist, turn and bump in the road too
Best wishes
Daughter and full time carer for my mum who has Liver cirrhosis, ascites and varices in her oesophagus....
Thank you
21 Days post-transplant – Monuments and Monarchs
