Feelings

[Heartbr0ken]

I wrote a post on Friday after my partner’s shock diagnosis of alcohol cirrhosis and the life expectancy of 1-3 years that I was given by the doctors. My partner is unaware of the severity of his condition at present. He knows he has scarring but not to the extent of it. My partner has been in hospital nearly a week. He has put on 3lb since his admission as his appetite has returned. His swollen tummy has reduced and his HE has calmed down,

I saw my partner on Friday and I had to help him walk with a Zimmer frame to the shower and I had to shower him. The tremors he had were very bad. I saw him yesterday and he walked by himself with the Zimmer frame and showered himself. The tremors had nearly stopped. I saw him today and he was walking unaided and showered himself and no tremors.

He was very sleepy and tearful today. He said he wants to come home but I know he’s not ready for that yet.

My emotions are all over the place. One moment I’m positive about the outcome and how we will prove the doctors wrong and how well he has done since being admitted. Even the doctors and nurses are astounded at the progress he has made. And then the next I’m crying, wondering what an earth I’m going to do without him, how to explain to my 6 year old where my partner is, how will I cope. The only time we have been apart is when he goes away for work and that’s only for three nights at maximum, every few months. I know it’s a long road ahead and I’m already a mess on day 3.

I am just so unsure how to feel and how to cope.

[AlexJ91]

Hello, I am so sorry to hear about your situation. I can empathize with you, as I have experienced very similar with my mum recently. I was told she had a 50/50 chance and her life would not return to ‘normal’. However, after 8 weeks in hospital and 2 weeks at home, she has regained nearly all of her skills and is looking to go back to work in the near future, something I thought she would never be able to do.

It is hard for us as family members, as we want all of the answers so we can have it straight in our own heads. Unfortunately, it is the nature of this disease to be extremely difficult to predict but that also means that there is hope of some sort of recovery. Whilst I appreciate that my mums cirrohsis will not go away and she will now live with the symptoms for the rest of her life, I can see now that it isn’t a “death sentence” and that she can still have a good quality of life.

My best advice to you is to take one day at a time, easier said than done I know, but the worry made me poorly and it didn’t change the outcome. It sounds like your partner is on a very positive path to recovery. Be strong for your partner and yourself, talk to someone when you need to and be kind to yourself - rest & as little worrying as possible!

[Lam1e]

You are doing really well and should be proud of yourself 🤗👍 Take each day as it comes and take something positive from it! Perhaps it should be for all of you, even if you have to write things in it for him to start with!

He is definitely in the right place and getting the medical care he needs and it sounds like he is doing really well too! After my diagnosis in December 2018 my initial stay in hospital was 4 weeks, and I really needed that amount of time for things to stabilise and accept how ill I was, so don’t rush things!

I too wanted to prove all the medical staff wrong, questioned everything and in a way I felt that they were not on my side. However they will want your partner to get well as much as you do and you all become a team! Probably sounds strange and the medical staff are not always good at communicating, and once I accepted that my illness was not going away with their support I really turned things round!

Stay safe🙏👍

Lesley

[Heartbr0ken in reply to Lam1e]

He’s very low today. He is wobbly, doesn’t want to eat and has bleeding when he went to the loo. I’m in bits but know I have to shake it off before I see him this evening. I think I’m still in a state of shock

[Lam1e in reply to Heartbr0ken]

There are wobbly days, and I had many days where I just wasn’t hungry and ended up only being able to get small amounts of food down! Lack of sleep can also be a problem as they tend to wake you up very early and hospital wards are not quiet places! I used to always fall asleep when the Dr’s were due and they would wake me up and I had a puddle of drool coming out my mouth🤣🤣🤣 not very pretty! He/ you needs to make sure the staff know about the bleeding and also that he is not having a great morning! He has shared that with you which is good, but you also need to take care of you! Do something for you and your little one!

He is doing well, even though today he doesn’t feel like it👍 and he will be looking forward to seeing you later. He will know this is hard for you too🙏

[Lladro in reply to Heartbr0ken]

Hi I feel for you, I was very poorly when diagnosed with cirrhosis. I was in hospital for 2 months and had everything the illness could throw at you, with varices bleeding being the worst, after 5 blood transfusions I found myself in a sorry state. It took nearly 4 months for

me to walk unaided. These are early days for you and your partner, but the most important advice is to keep both your spirits up. Do everything in your power to stop depression sitting in. I was told I wouldn’t make it everyday and I would never work again. 2 years on, I’m alive, working full time, my meds are being reduced and the doctors are astounded. I put that down to my positive attitude. I won’t let this disease take over my life. Sending all my heartfelt love to you and your partner. There is hope. Take care,

Caroline xx

[Si2017]

Hi there,

Your partner's situation sounds very similar to mine three and a half years ago. We were told I had 6 monthe to 2 years. I was told my ascites would need to be drained every two weeks for the rest of my life. My wife was told to expect the worst on my first two days in hospital. I've had all his symptoms including bleeding from the rectum.

It is now three and a half years later. My bloods are good. My varices have healed up. My last drain was in 2017.

What I have learned is that all livers are individual. Statistics mean nothing. There will be good days and bad but his rapid progress in hospital is a very good sign. Do not despair xo

[jacobsmum24]

It is very early days but he is already doing much better than a few days ago. Now that he is eating, he will get stronger every day and if the ascites is resolving, he will feel much more comfortable. You mentioned that he was jaundiced and that will make him fatigued but hopefully that will also clear in a week or two. Depending on how much he was drinking and for how long, it could be a number of weeks/months before he stabilises. As many others have said, cirrhosis isnt a death sentence, it will always be there but there are lots of people on here proving that you can have a good quality of life for a long time to come. When I was first diagnosed I think I would have been classed as too ill for transplant but now I am far too well for it to be an option. Stay positive and take one day at a time but never give up.

[Hidden]

Good afternoon Heartbr0ken,

I am sorry to hear your partner is unwell.

I can see you are getting lots of support from our forum members.

May I suggest you keep in good contact with the nursing and medical teams for support.

You can also call out nurse led helpline on 0800 652 7330 Mon- Fri 10am -3pm.

Take care of yourself too,

Trust9