Can I give a little hope?

[kyia]

My partner was diagnosed with alcohol-related decompensated cirrhosis in October 2017 after having been rushed to A&E, vomiting blood and not being able to breathe due to severe ascites. The emergency doctor was so concerned about his prognosis that she asked that I contact his daughters to come to the hospital urgently. He survived that initial admission and was discharged, still very weak and poorly.

He gave up drinking immediately, but was still suffering from ascites and severe muscle wastage, with no appetite due to the ascites, so it has been a very long road to try and build his strength up. He was not allowed to take Spironolactone, as his blood sodium was low, and had to return to hospital for drains every 4 weeks for several months, and developed an umbilical hernia from the fluid build-up. He had a follow-up with his liver consultant in February 2018, who was pleased with his progress, and pronounced that his liver was compensated again.

Cut to the end of March 2018 - the umbilical hernia became incarcerated and he needed emergency surgery, which, although successful, caused the liver to become decompensated again, and left him with a low-grade infection in the fluid in his belly.

After a final drain, things settled down again, with antibiotics to combat the infection, and slowly, his strength returned. At the beginning of 2018, he needed a wheelchair to get to his hospital appointments, and now he can walk miles.

He saw his consultant again last Monday, and in her words he is "in excellent health" and his liver has "complete recompensation". In the future, he will have 6-monthly ultrasounds and be seen annually in a nurse-led clinic.

I hope this gives a glimmer of hope to any of you who are just starting down the road of returning to better health after a grim diagnosis.

[Garyvh]

That's great kyia, it's truly amazing what our bodies are capable of with a bit of tlc and the right medical interventions.

Really pleased for you both ☺

[kyia in reply to Garyvh]

Thank you - it's been a struggle but worth it all.

[alfredthegreat]

That's fantastic news Kyia. The journey must have been long and stressful for both of you but what a fabulous outcome! Your story will give comfort and hope to so many people. Thank you for posting. May life just get better and better for you both. Alf

[kyia in reply to alfredthegreat]

Thanks Alf, your journey continues to inspire us - you've been through so much!

[Hidden in reply to kyia]

Congrats to you both kyia! As for Alfred being an inspiration all I can say is that they dont call him the great one for nothing! He'll be up and about guitar in hand in no time!

The power of will is amazing isnt it? 😊

[kyia in reply to Hidden]

I hope that isn't the will on top of the fridge...

[Hidden in reply to kyia]

Lol! No not this time. 😅

[Coralsun]

Hi Kiya, it's brilliant that your partner has fought and come back from such a dire situation. It's so inspiring and uplifting to hear such a positive story. Well done you too, I'm sure you've been central to his recovery and in supporting him through the worse of times.Thankyou for sharing. Wishing you the very best in the future.

Coralsun

[kyia in reply to Coralsun]

Thank you for your kind words - I felt pretty helpless at the beginning of all this, but this forum has given us so much it's made it all easier.

[GrandmaDylan]

So pleased for you both that he's in such good health now. It must have been terrifying to see him go through such a nightmare. Enjoy your life together. Deb

[kyia in reply to GrandmaDylan]

Thank you, Deb. It's so nice to have good news for a change!

[Brett11]

That’s a bit like my journey except the doctors are to scared to operate on my umbilical hernia as they fear that if I go back to decompensated, I might not recover enough to get compensated again.

Cheers,

Brett

[kyia in reply to Brett11]

Until he had the emergency, they were just waiting and watching the hernia. I hope you get to the point where they'll consider a repair for you.

[LAJ123]

Kyia,

Truly grateful that you were able to tell us how it really is possible to recover from even the most dire circumstances.

As it happens, in the morning, I will show your post to someone who is exactly in the place your partner found himself in October 2017. Apart from a few differences, the last five weeks has been remarkably similar. Perfect timing

Thank you.

Jim

[kyia in reply to LAJ123]

I've shown this to my partner, who wanted me to post his story, and he so pleased that he may have helped someone. Thank you so much for letting us know, Jim.

[LAJ123 in reply to kyia]

Kyia,

Thank you.

I sent them a link to the whole thread. When they respond, I'll share what they said.

Jim

[kyia in reply to LAJ123]

That's great Jim!

[Miss_fab]

Hi Kiya xx

Omg what a journey you all have been on.

My story is almost identical to your husbands (apart from the hernia)

Its amazing what our bodies & more importantly our liver can do IF we look after them.

I respect my liver & all my organs that I damaged thru drinking so much now,they gave me a second chance so it's the least I can do 💪x

My family was also called & I was given 6 months to live ....that was in July 2017 & thank god I'm still here & fighting fit (Well I'm trying x)

The muscle wastage gets better but it takes time hopefully your husband will see these results one day too X

Take care lovely & stay strong there is light at the end of the tunnel ❤

Love Lisa xx

(Ps;Msg me if you need to talk) 🙂

[kyia in reply to Miss_fab]

Aw, Lisa, thanks for your help and optimism. He just wants to get more upper body strength now, and short of weight-lifting, not sure what he could do!

[Beefeater]

What an inspirational journey!! I wish could also have the bright outcome like your partner! Blessings

[kyia in reply to Beefeater]

Thank you, and all the best for your future.

[Livewell69]

Wow It is this is a post that will give hooe to many. My partner has been through all (except the hernia) in the last 12 months. Intensive care in Sept and his liver has been decompensated since but last 2 weeks since discharge 1st Feb I have seen changes that we dared not hope for.

We were/are looking at the possibility of a transplant once he gets a bit better.

Can I ask is this something your partner does not need due to his great recovery?

Mine has gone from being in bed most of the time to now being out in the garden and pottering about we dare even hioe he may get back to work on the future as he has been off 7 months this time.

Thank you so much for sharing

[kyia in reply to Livewell69]

His consultant had a wait and see approach to his treatment, and said most improvement happens in the first year after being diagnosed. As far as I know, a possible transplant assessment was never mentioned, as they wanted to see how well he'd recover.

I really feel for what you're going through right now, and I hope your partner continues to improve. It's wonderful when they take those first baby steps towards recovering from being so ill.

[Hidden]

Thank you so much for sharing this positive post kyia - I am sure this will be very inspirational to forum members in a similiar situation.

Trust1

[Beture47]

A truly amazing story

Best wishes Elizabeth

[kyia in reply to Beture47]

Thanks, Elizabeth!

[Flip58a5tschool]

Thank you so much for posting this; really helped my attitude

[kyia in reply to Flip58a5tschool]

I've shown this to my partner and he's so pleased that his story has done someone some good. All the best!

[Dogbot]

I’m so pleased for you both because it’s a partnership victory well done 👍 👍

[kyia in reply to Dogbot]

I remember thinking that I wasn't sure that I was strong enough to take it all when he was so ill - I guess we're more resilient than we know!

[Dogbot in reply to kyia]

Yes the wife and I have talked a lot in the last 15 years about how tough it was on both of us, but I can’t forget my family especially my daughter for all support She gave that’s why I always say I’m a lucky man and I wish the same success for you both and everyone else’s that’s trying 👍😀

[Hidden]

Hi kyla,

My husband went through something similar in Nov 2015 and except for the walking miles due to a bad ankle is doing well and has been on the 6 month follow-up appointments since then.

Wishing you both the best,

Mary

[kyia in reply to Hidden]

I'm glad to hear that he's stayed well for so long - I hope the ankle is just a temporary thing.

[Ilovemydog7]

Thanks for that , I'm so pleased for you both too

[kyia in reply to Ilovemydog7]

Thank you!

[Hidden]

Such a great story Kyia, my son is in the same position right now so I'm drawing great strength from you

[Hidden]

What a fantastic turn around,. Bless you both xx

[kyia in reply to Hidden]

I read your post about your son and didn't have a chance to respond yesterday. I'm so glad you found this and yes, there is hope. It's a long road, but there can be a normal life after getting such a scary diagnosis. I hope things improve for your son and I'm happy to answer any specific questions you may have xx

[Hidden in reply to kyia]

Hi Kyia,

I hope to god he recovers. I cant imagine my life, without him!! Consultants didn't expect him to survive his admission and nearly 3 weeks later he is discharged to out care. I know hes far from being out of the woods, couldn't bare to lose him, especially after hes been discharged but we know it's a very rocky road, ahead. X

[alfredthegreat]

Hi Kyia,

It's lovely to read such stories as this.

It gives so much hope and inspiration to others on the forum.

It's fantastic that he has now been pronounced in excellent health.

Thank you for posting this on the forum.

Wishing you many, many happy and healthy years together

Alf.

[kyia in reply to alfredthegreat]

Thank you so much, Alf. You're not bad at being an inspiration yourself!

[Hidden]

Hi Kyia, how is your partner now? Did he have jaundice too?

[Hidden]

Where abouts in the world are you Kyia? Sounds like hubby is doing very well

[kyia]

We're in the UK. He did have jaundice but not that I'd really noticed. He was in bed most of the day and up all night and I hadn't seen him in daylight for a while. He is doing quite well. We're very lucky.