PBC Foundation

Liver transplant at Leeds1

Dear PBC people,

I have been informed that I am in need of a transplant as my liver is deteriorating quite fast. My albumin levels are at present. The weird thing is that I feel great, although a little yellow, skin has darkened a few shades and eyes are jaundiced, been diagnosed with PBC since years so I guess I've not done bad. I want to know what other people have experienced and how best to prepare for the operation and living thereafter. The surgeon said they would remove my gall bladder at the same time and I'm not sure why?

I am scared to death and every time the phone rings I am startled.

Any comments will be truly appreciated.

Thanks in advance.

xxx

21 Replies
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Hi Florrie

I had a transplant at Leeds 8 months ago.

They are super there, you are us safe hands.

How about you message me privately and maybe it would be easier to chat through on phone?

You can send personal messages through this forum so we can exchange numbers

Angie x

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Hi Angie,

Thanks for replying. I don't know how to message people personally on this forum so please could you send me your email/mobile number.

I look forward to hearing from you soon x

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Hi

You can e mail me at

Deanopandy@gmail.com

Xx

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Ps it's all lower case x

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Hi Angie, my email is ckevat@gmail.com. Look forward to hearing from you soon x

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Hi Florrie I had a transplant in 2004 at The Royal Free in London. They take your gall bladder out at the same time as its too difficult to attach everything to your new liver. I found the worse thing was the wait, once you get the phone call things go so fast you don't have time to worry. As long as you do as the Doctors tell you afterwards and take your meds regularly you will be OK. Hope you don't have long to wait and things go well. Like busylady if you would like to message me I am willing to exchange telephone telephone numbers if you would like to talk. To send a message just click on my photo and ther should be a message link there. I look forward to hearing from you.

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Thanks for explaining this as it certainly makes sense to me now.

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Hi Florrie, I am not that close yet and I am in the USA so not sure how it works there. Sounds like 'busylady' and 'nannabn' will be good for you to talk to though. I also didn't know that about the gallbladder, but I had to have mine removed already, so one less thing 'in the way' I guess. Florrie, I can only imagine how all the emotions you are going through. I just really wanted to tell you I will keep you in my prayers daily and I know everything will go wonderful for you too. thoughts and prayers, cyndy

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It is ok that you live in the USA as we can still chat via email/ facebook or something. Much appreciated for your time x

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Hi as a pbc sufferer,i ,d just like to wish you the very best of luck regarding your transplant,and a speedy recovery.x

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Thank you so much for your kind words. I am absolutely scared to death and in one way I would like the operation over and done with and on the other hand I am never going to be ready for it. x

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Take care, hope you make a speedy recovery x

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Hiya, first of all, thank you. Are you a nurse just wondered?

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Yes I am a paediatric nurse and have a recent diagnosis of PBC myself x

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Wow, which are do you specialise in. I am part way through my Nursing course but not sure if I will complete as I've got the imminent transplant awaiting at any time. How do you cope with the shifts x

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Hi Florrie try not to worry I know 3 people, 2 women and one man who have had liver transplants because of PBC and all 3 are doing fab. They all say it did take a good 6months to get over the surgery and get back to some degree of normality but they also say that as soon as they had their transplants they felt so well and feel they now have their lives back. What age are you and how long have you had PBC if you dont mind my asking?

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Hi LittleMo,

I am a born worrier and so stressed out you wouldn't believe and now I've got this to content with too. I don't think I could manage 6 days of rest with what's happening at my house. I am 41 years old and I've had Pbc for about 5 years. My condition was managed until May of this year and then it was discovered that I had end stage L. disease.

I've been dealt a bad set of cards and I can't believe all that's gone wrong in my life, it's just one thing after another. Sometimes think what's the point in extending the life that I have got.

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Ah dont say that you are only young have a whole lot of living to do yet. You mentioned you are doing nursing what sort of nursing are you doing? Do you have a partner or any children or family that live nearby ? You are probably just all at sea emotionally at min with your liver in failure so are stressed out with the thoughts of surgery etc. The specialists in this field are fantastic you will be in good hands. Are you still able to get out and about? We are all here for you so dont get downhearted please God when you get ur transplant you will have a whole new lease on life according to my 3 friends I mentioned who have all had transplants. Take care. Bfn bedtime for me. Night night.

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P.S. How did the hepatologists diagnose end stage of the disease was it through biopsy?

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Hello just wanted to wish all the best, and to recover quickly. If you do not mind how long have you had Pbc ?

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Hiya, I was diagnosed when I was 36years old which was 5 years ago. xx

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