British Liver Trust
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Transplant

I wrote last week praying for my sister. She needed an urgent transplant and after two weeks at QE,time was running out. She is in theatre now after being told yesterday she would be on life support today,they told her husband they had a liver !! We are over the moon,i know things can still go wrong but this was her last chance,hopefully we may even have a diagnosis as the cause has never been established. I just yet want to know from anyone who has had a transplant what her journey may now be,i know all cases are different but we have no idea what to expect. Thanks for all you thoughts and support

Sal x

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Dear Sal

There are lots of lovely people on here who I'm sure will share their experiences of liver transplant.

In the meantime we do have information on our website which gives some information on what to expect at: britishlivertrust.org.uk/li...

With best wishes for a good recovery for your sister.

Carol

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Oh Sal, to be given this gift at this stage is wonderful indeed. Such an incredibly difficult time for you all I know.

The surgeons at Birmingham QE are brilliant, Mr Perera performed my transplant and he did a fine job. The nurses are lovely and will look after your sister well.

The road to recovery can be a long and uncomfortable one, but with plenty of love and support, it is a lot easier.

Please do keep us informed of her progress, and of make sure that her husband gets support too.

I know that you are poorly too so don't forget to look after yourself.

Mike X

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Thank you so much for your lovely reply and for thinking about myself and her husband. We have all had 4 weeks if hell. I hope you are doing well and continue to do do.

This is just the beginning

Many thanks sal x

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I am so pleased a liver has come in time. Be prepared for a roller coaster of ups and downs. There will be issues and blips, it takes a time to get all the medications correct for each person , and odd issues can arise many are not insurmountable in the long run, just feel like it at the time. You and everyone around your sister must take great care of yourselves too, with time outs, eating properly etc.

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Yes as a caregiver it is very important to take care of yourself too.... So you won't become rundown.

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As others have said the journey after transplant can vary dramatically from patient to patient. Immediately after transplant you can expect a few ups and downs. For me there was some concern about my kidneys not working, but that sorted itself out. It was very uncomfortable for the first few days but I was out ICU after 48 hours and back in the normal ward. I was out of hospital after 10 days, after 2 weeks I out and about and after 6 months had a full time job again.

My point is although there are often complications and setbacks there's also every chance of getting a normal life back.

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We still have all this to come yet but just to let you know we're thinking of you & your family. xx

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That is so lovely Sal! I hope it all goes well. I have a blog you can read and it has my story but also you can read posts on what I have been up to. Hopefully it will help but everyone's journey is so different!

There might be some blips after and it can take a while for the new liver to settle in. It a massive surgery and your sister will be weak from being so poorly beforehand. Hoping that it will be an easy journey for you all.

transplantmum.blogspot.com

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Enjoyed reading your blog. 😀

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i hope all goes well. the power of prayer is beyond understanding sometimes. im so glad that your prayers were answered.xoxoxo i will keep praying all goes well for you all.

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Thank you so much,people are so caring

Sal x

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hi there,

and YAY!!

It's amazing when fate steps in and helps out! :)

As for me, I was in hospital 4 weeks after transplant, but I had an infection or two, so that prolonged it.

My specialist says the pain afterwards can be anywhere from 9 to 12 months, depending, around the incision area and just on that side in general.

She WILL need plenty of rest. Plenty. no one should push her outside of normal guidelines as set forth by the doctors.

Here's the thing to remember, this is a HUGE surgery. People don't realize what this surgery entails. they think it is merely taking out the old liver and putting in the new.

They have to lift the entire rib cage up (which may lead to back pain, some bad, some not so bad afterwards) They also remove the organs and then put them back in, as most often the liver is not a perfect match, size wise. So its a pretty big deal. I only say this so you know or understand WHY she does not want to jump up and cook, or is able to take care of little ones or vacuum the house. Most of us (although not all) need help in the early days..by that we mean months.

Also, if she was terribly ill prior to transplant, this can effect how long she is in hospital and how well she fares at first at home.

I have friends who were in when I was who are gardening, working, all of it back to normal. mine was nearly 9 months ago! :)

Good luck with everything!

cheering you & your family on!

xxxxxx

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Thanks for your advise,she is very similar to me and doesn't do I'll,so I will tell her she must take it very easy,at the moment her kidneys are causing concern and so is her mental state,but it's very early days. You are always helping others even when you have your own problems,so thanks again and hope you're feeling OK,

Sal x

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aww, your a sweetie and no worries! I'm just giving back what has been given to me by this group!

hugs you!

XXXXX

kimberly

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also, sorry to hear about the kidneys..that does happen..to what level is what matters, and what are they saying about her mental health state? is it the amount or type of pain medication she is on? most hospitals have pain managements teams that can help a lot with that..if that were the issue?

XXXXX

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All I know is that she's become paranoid,saying the nurses are trying to overdose her.She also wants her husband there all the time and has become very bossy and demanding,which is completely out of character. Myself and our parents are visiting tomorrow so may have more answers. Thanks again for your concern,take good care of yourself

Sal x

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That is most likely to be down to the morphine Sal. After my transplant, I was seeing people in the light fittings, codewords everywhere and I thought the nurses were able to read my thoughts. I laugh about it now but it's a horrible way to be. I'm sure it'll improve soon.

Hope you're all doing well under the circumstances.

Mike XX

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Thanks,went to see her today and was surprised by how well she looks considering how I'll she was. Drains and lines everywhere but she's very bright and become demanding and bossy. The lovely nurse was very understanding and said she'd been bossing her all day !!! At least it means she's with it as last week she didn't know where she was and couldn't stay awake. I'm tired now,takes it out of me going there but I have to as this time last week i didn't think I'd ever see her again. Thanks for your continued support and advise

Sal x

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Hi, I can't offer anything in regard to the transplant questions.

I just wanted to let you know that you are all being sent prayers, healing energies and support to get you through a tough time and miraculous time rolled into one.

Much love

Rita

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I am so happy to hear the wonderful news! Please keep us all posted on the progress! 😍 To both of you!

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