Hi, haven’t been here much but - British Liver Trust

British Liver Trust
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Hi, haven’t been here much but

Mywildlove
Mywildlove
44 Replies

I thought it would share an update about my husband. On August 27th he decided he needed to go to the hospital. His belly was very large and swollen, his GI had told him to double his diuretics for a week but they weren’t doing a thing. He was in a lot of pain and started throwing up. I was worried about an infection in his fluid and sure enough, the first drain they did was bloody and infected. His blood pressure was very low so they admitted him to CCU where he stayed for 2 weeks. The infection knocked his liver out and also put him into kidney failure. The first weekend he was there his MELD was 38. A week prior his MELD was 18. They almost put him on dialysis, I mean it was so so close, but finally his kidneys started functioning normally but that took 3 weeks in hospital. His liver also regained a tiny bit of function but it’s not enough. They transported us to the transplant hospital and back 4 times so he could meet with the team for evaluation. Thankfully he was listed on Friday September 13th!! We’ve had numerous people come forward wanting to be tested to see if they’re a match. 2 of them, a man he’s been friends with since they were teenagers and a cousin of his, both filled out the application and sent it in. They’re both the right blood type but if either of them turn out to not be a good match then we have more who want to try. They told my husband that without transplant the prognosis is poor but he is near the top of the list. The transplant team are absolutely wonderful, as is the team of doctors he had while in hospital. They saved his life and I will never be able to thank them enough. He’s home now and will be on antibiotics until after transplant but when I say it all happened fast, I mean it happened FAST. He went from feeling fine to suddenly being in so much pain. If he had waited another day I really feel that I would be posting a very different update. Hopefully the next time I post will be about him recovering after transplant!! ♥️

44 Replies
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Jaycee19

Hi there, I am afraid I really do not know very much about your husbands condition.

What I can say, is there will be lots of folks on this site who will have been through similar.

All of whom will be delighted to offer their support.

For now I just wanted you to know I am thinking of you. I send virtual hugs and lots of luck for both your journeys. I know that it is really hard for the carer also.

For now I am grateful that this posting from you was as positive as it is.

So stay strong.

You are in just the right place to get the support you both need.

Jaycee

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Wass71

Hi, firstly does this mean you guys have recently got married?? If so congrats!!

I'm so sorry to hear he has been so ill, but glad he has been given the opportunity to have a TP. All your team work getting him to this stage has paid off. I hope he knows how your imput has saved him. I'm sure he does know that, and together you'll get over this next big challenge.

I too (like others here) am waiting for the call. My husband is the same blood group as me, and wants to donate, but i wouldn't put him through the risks, we have two boys, I couldn't bear it if he became ill or worse. I hope things happen soon for your love.

Thinking of you, and wishing you all the best for the future.

Wass x

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Oldham12

Hi

Your husband,you and the hospital team have been fantastic. I'm sending lots of positive vibes, love and hugs to you all. Love and hugs Lynne xxxx

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Laura009

Lovely to hear from you and l wish you both every success with a transplant. Yes you too, like many others, are getting excellent care. Keep going, stay positive, you'll get there !

All the best

Laura xx

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david5354

What shock it must have been

Keep gong I had only a few weeks left and now transplanted and on holiday. I pray it goes the same for you

David

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ShropshireLass2019

Hope your having a wonderful holiday David after the tough road you've been down.

Life's for enjoying now !

Love to you and your family x

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david5354

Thank you

It’s been great, home again on Tuesday

I just want you all to be as lucky as me

The road has been tough but it has given me an appreciation of life and have met people who have amazed and showed kindness to me, so there have been pluses as well

David

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ThreeSmiles

I may have asked before if so sorry ☹️ but when did you have your TP? I had mine August 27 2018 at QE as well!

We had our first holiday in 5 years just last month, well ending Aug 3.

Miles

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david5354

Mine was March last year at theQEH

David

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ThreeSmiles

Aha I remember that now! Sorry - HE still has its effect unfortunately! So you were quite a way ahead of me!

Hope you are having a great holiday 👍

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david5354

Still in France raining🙂

At leat you know what HE is now😃

David

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ThreeSmiles

Yep - found out about HE in 2015☹️

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ShropshireLass2019

Hi

I dont have HE and may have already asked you in the past, what beautiful part of France are you in as we love exploring the various regions?

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david5354

Hi

We were in epernay

Now Calais before catching the tunnel home tomorrow

We spent a week on Germany in the Mosel region

It was dream to do after 8 years of not being go to go any where due HE waiting list plus all the symptoms

I feel well recovered

Where to next

David

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ShropshireLass2019

Sounds like you had a lovely time! Never been to Germany but maybe add it to my list of places to visit!

I'm currently in Turkey and situated in a secluded hotel across from Marmariste which is lovely.

Have a pleasant journey home tomorrow on tunnel!

Trish

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david5354

Thanks

Don’t try the para jump on your way home 😃

David

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ShropshireLass2019

Dunn it once and wont be doing it again 🤣🤣🤣

Take Care

Trish

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ThreeSmiles

That’s so cool David! I mean brilliant and coolio 👍

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davianne

Hi, I hope and pray that your Hubby gets his transplant very soon. Your both in my thoughts,

David

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Bs1524

Good luck with the transplant, thinking of you x

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kyia

You've really been through a lot in the last few weeks! It just shows how quickly things can go downhill. Hopefully now everything will be going in the right direction!

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Mywildlove

Thank you all so much!! It’s been a crazy weekend. He got the first call Friday night so we ran around and got ready. They called back and said to wait for the coordinator to call so we waited about 30 minutes before they called back again and said there was a problem with the donor liver. I now know how you all felt when you 1-get the call and 2-there’s something wrong and it doesn’t happen that time. They called again last night and said to be ready because it will probably be today, I don’t know how they know that but they’re the experts here haha so he’s at the very top of the list and we are waiting for the next call.

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ThreeSmiles

Really hope so wildy...Good luck - for whenever you get the next call. 👍

Miles

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Jaycee19
Jaycee19
in reply to Mywildlove

I really am hoping it all goes ahead this time for you. I have everything crossed for you. Jaycee

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ShropshireLass2019

Hi Mywildlove

Firstly thank you for sharing the tough road your husband/ you plus your family have been down these many weeks. The news that your hubby has managed to survive with the help from the amazing team of medical ANGEL'S 👼👼👼 is wonderful!

I just wanted to wish your hubby all the best for his future TP and my fingers are crossed that all goes really well for a successful recovery when it happens!

Take care and look after yourself too!

Love Trish x

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alfredthegreat

Hoping you get the next call very soon and that everything goes ahead. Thinking of you both. Alf.

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Mywildlove

Thank you all so much!! We got the second call yesterday around noon, have been here since 3 yesterday afternoon. They said the liver looks to be a good match and the surgery is scheduled for around lunchtime today, so in about 4 1/2 hours. I feel like I’m going to puke (sorry) and I’m happy and excited and terrified. They said the donor liver has a bacteria but they will give him antibiotics so it clears it and doesn’t spread to his body. I’ve gotta take a nerve pill, holy crap! ♥️

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ThreeSmiles

Hope it goes well! Good luck!!

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Jaycee19
Jaycee19
in reply to Mywildlove

I still hold you both in my heart hope you are ok ? I expect your nerves are in a state. Stay strong. Jaycee

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Filistines

Everything crossed twice for you both! x

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Smyally

Good luck to you and your husband. Hope it all goes well xx

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Filistines
Filistines
in reply to Smyally

How's it going Julia? Sending you love and best wishes x

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Smyally
Smyally
in reply to Filistines

Everything is going well so far. Had me up and walking earlier today. Really happy so far xx

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Filistines
Filistines
in reply to Smyally

That's great! I'm going to grate some nutmeg on my hot milk now to celebrate your recovery!

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ThreeSmiles
ThreeSmiles
in reply to Smyally

They don’t mess about do they!

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Filistines

amazing isn't it? as soon as the anaesthetic's worn off, sounds like.

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ThreeSmiles

Lol, that’s just about right . Anaesthetics yes but pain no! Pain definitely not worn off before they have you out and about and down the dreaded corridor!

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Mywildlove
Mywildlove
in reply to Smyally

Hi, did you also just have a transplant?

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Smyally
Smyally
in reply to Mywildlove

Yes. Had my new liver last Thursday 19th still in HDU for the time being then will be transferred to ward G5 xx

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Eddie3801

Good luck to both of you! I’m praying for y’all...

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Mywildlove

He’s awake!! The surgery went well, no complications!! They took the breathing tube out this morning and he’s only had a little pain so far but they say tomorrow he will feel worse but the day after he will feel like a million bucks. We are just so beyond happy and relieved. I wish we could thank the donors family but I know we will never get that chance. And “thank you” just wouldn’t be enough. His color is already so much better, he doesn’t look nearly as jaundiced but his pee is yellow!! So the yellows are in the right places 😊 thank you all so much!! ♥️

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Smyally
Smyally
in reply to Mywildlove

So pleased to read this. Here’s hoping his road to recovery goes well. It’s amazing how well you can feel in just a few days xx

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ThreeSmiles

Fantastic!! That’s brilliant news. Best of luck to you both for his speedy recovery! 👍👍👍

Miles

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Trust9
Trust9Administrator

Good afternoon Mywildlove,

Thats great to hear your husbands surgery went well !

Best wishes for a speedy recovery from all of us at the British Liver Trust

Trust9

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