Can I give a little hope?: My partner... - British Liver Trust

British Liver Trust
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Can I give a little hope?

kyia
kyia
35 Replies

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.

35 Replies
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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 ☺

1 like
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kyia
kyia
in reply to Garyvh

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

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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

4 likes
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kyia
kyia
in reply to alfredthegreat

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

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Hidden
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? 😊

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kyia
kyia
in reply to Hidden

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

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Hidden
Hidden
in reply to kyia

Lol! No not this time. 😅

1 like
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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

3 likes
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kyia
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.

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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

2 likes
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kyia
kyia
in reply to GrandmaDylan

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

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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

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kyia
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.

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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

5 likes
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kyia
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.

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LAJ123
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

1 like
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kyia
kyia
in reply to LAJ123

That's great Jim!

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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) 🙂

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kyia
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!

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Beefeater

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

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kyia
kyia
in reply to Beefeater

Thank you, and all the best for your future.

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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

1 like
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kyia
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.

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Trust1
Trust1Administrator

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

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Beture47

A truly amazing story

Best wishes Elizabeth

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kyia
kyia
in reply to Beture47

Thanks, Elizabeth!

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Flip58a5tschool

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

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kyia

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

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Dogbot

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

1 like
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kyia
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!

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Dogbot
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 👍😀

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mncold

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

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kyia
kyia
in reply to mncold

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

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Ilovemydog7

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

1 like
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kyia
kyia
in reply to Ilovemydog7

Thank you!

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