Liver Transplant : Hello everyone I haven’t... - PBC Foundation

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Liver Transplant

Prettyeyes79 profile image
43 Replies

Hello everyone

I haven’t be active in the blog lately but I wanted to share my great news. I got a liver transplant on Tuesday and now I’m recovering in the hospital.

I wanted to know anyone got a new liver, does your lifestyle change. Did the pcb go away after getting a new liver, any change in diet, if pcb did go away for those who a new liver longer did the pcb come back.

I know it’s going to be challenge to me everyday adjusting basically a whole new life

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Prettyeyes79 profile image
Prettyeyes79
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43 Replies

Congratulations! I don't have any experience of this, and I'm sure you'll get plenty replies from people who know where you are at, but I just wanted to wish you a great recovery and thank you for letting us know your good news! Keep going well!

Prettyeyes79 profile image
Prettyeyes79 in reply to

Thank you. I was told by my surgeon that pcb will be gone

26smith profile image
26smith in reply to

Hi I had a a liver transplant just over 4 years ago I was put on the super urgent list and a liver was found for me in two days, how lucky was I. I was diagnose with PBC 18 months before and on urso. It was a little different for me as I was quite poorly before and was in hospital for two weeks my recovery too a bit longer. They said the PBC could/or not come

back. I thank the Queen Elizabeth hospital,England for saving my life. My diet did alter after my operation I was told I could eat anything but after 3 months to go back to a healthy eating diet.

With the medication and advice from the hospital you will soon be on the road to recovery.I wish you well like me you have been giving the Gift of Life.

in reply to 26smith

Hi, I think yr message was for Prettyeyes and not for me so I just replied to her with hedzup!

Prettyeyes79 profile image
Prettyeyes79 in reply to 26smith

Thank you. I just had liver transplant two weeks ago and it was a life saver to me. I’m very luck to get one. I have no more yellow eyes, my skin is coming back to normal no blotches of different skin tone but most importantly no itching. they said it will take about 3 months to feel normal again like no pain but I felt normal after the surgery.

I’m in the states and I have a liver transplant team I report to every Thursday for routine bloodwork. You do take a lot of meds after transplant but I was taking a lot of meds with pbc.

gwillistexas profile image
gwillistexas in reply to Prettyeyes79

Prettyeyes79...are you doing well?

Prettyeyes79 profile image
Prettyeyes79 in reply to gwillistexas

I’m doing great. Pain but they say it be 3 months for me to feel normal with no pain. I don’t have any of the pbc symptoms no more and I’m so thankful for St Luke’s for giving a new liver and a chance in a normal life.

I hope you doing well also. Are you on the transplant list? My dr actually recommend me being on the list since he felt that there were no changes in my liver with all the meds I took. I’m so glad I listen to him and apply to be on the transplant list.

My dr and the liver transplant team is in Houston st Luke’s medical center. Best care I have with them since day 1 I enter as a pcb patient

gwillistexas profile image
gwillistexas in reply to Prettyeyes79

Great! No I’m not on transplant list. They say I’m far away from it. Hope that’s true. Just been thinking of you & wanted to ask how you were doing. I’m happy you feel so much better now. 😊🦋

Prettyeyes79 profile image
Prettyeyes79 in reply to gwillistexas

Thank you! I feel like a different person. I so lucky.

I know my score was low to be on tranplant but my dr said it don’t hurt to be on it since there a waiting list. He said it’s better be in the list so future if my liver gets worse I’m already on the list.

gwillistexas profile image
gwillistexas in reply to Prettyeyes79

You’re welcome 😊. Hope you continue doing well. Stay in touch with us. 🦋

Yankeerose3 profile image
Yankeerose3

Congratulations! I don't know either but hope it does. Take care

gwillistexas profile image
gwillistexas

Glad to hear you are recovering nicely. I have no personal experience with transplant but I am a member of PBC-Uncut. Bel Kambach is a member and had transplant, I think last June at Mayo In Arizona. She is originally from Costa Rica (?) & lives in Minnesota where she is a professor. I think she said she was started on Urso after transplant & will take for life because the autoimmune doesn’t go away with transplant, although it may or may not affect her new liver. Beautiful lady & has done exceptionally well.

Prettyeyes79 profile image
Prettyeyes79 in reply to gwillistexas

Are you on the transplant list? My dr actually recommend to be on the liver transplant list

gwillistexas profile image
gwillistexas in reply to Prettyeyes79

G’morning! No, they say I’m nowhere near that stage. I pray it doesn’t go there👍

gwillistexas profile image
gwillistexas in reply to Prettyeyes79

I read your older posts & see you are in Texas?? I am in Tyler, TX.

Prettyeyes79 profile image
Prettyeyes79 in reply to gwillistexas

I’m from Pearland tx. My dr is at st Luke’s liver clinic in medical center

Prettyeyes79 profile image
Prettyeyes79

Thank you for your well wish. So far my eyes are white mostly and my face has color with pink finally after 5 yrs of this disease. The surgeon told me my pcb will be gone and it might come back 20 to 30 yrs after my transplant. But might not come back.

gwillistexas profile image
gwillistexas in reply to Prettyeyes79

You’re welcome. We all love to hear good news. Oh, I hope you didn’t think I was saying it would come back. Not at all. I know a lady who actually had hers 30 years ago & PBC hasn’t come back. I was only referring to the autoimmune not going away. Are you in the States?

Prettyeyes79 profile image
Prettyeyes79 in reply to gwillistexas

I’m hoping it will never come back. The last 5 yrs with pcb was miserable and now having the liver transplant I hope it will never come back. The surgery went well but after surgery you’re in do much discomfort and in pain

They say I will be here at the hospital for a good week then home in bedrest for 6 to 8 weeks depending how I recover

gwillistexas profile image
gwillistexas in reply to Prettyeyes79

Just keep positive thoughts. I bet you’ll be fine once you’re over the surgery & discomfort. If you don’t mind me asking, how long had you had PBC?

Prettyeyes79 profile image
Prettyeyes79 in reply to gwillistexas

I had pcb in 2013. I had the terrible itching, bad yellow eyes, discoloring in face and bonus high cholesterol bumps all over my body

gwillistexas profile image
gwillistexas in reply to Prettyeyes79

Oh my. I’m sorry. But, now that will be no more 😊

Prettyeyes79 profile image
Prettyeyes79 in reply to gwillistexas

I crossing my fingers it won’t come back

gwillistexas profile image
gwillistexas in reply to Prettyeyes79

Prayers are our most powerful gift 🙏🏻😉

Wocket profile image
Wocket

So glad for you. I love good news 😀

janine541 profile image
janine541

Hi im really happy for you and glad you feel well. How long did you have pbc before your liver transplant and what was your bloods

Prettyeyes79 profile image
Prettyeyes79

I had pcb for 5 yrs. I apply for liver transplant 6 months ago

janine541 profile image
janine541 in reply to Prettyeyes79

Well so glad it went well x

Prettyeyes79 profile image
Prettyeyes79 in reply to janine541

Thank you. So far my itching went away, my eyes are getting white and look like my head don’t each either. I’m blessed to get a transplant

janine541 profile image
janine541 in reply to Prettyeyes79

Im glad your itching has gone. Thats the worsd part and getting up with terrible pain.

I wish you well x

SunnyXXOO profile image
SunnyXXOO

Good morning Prettyeyes, can I ask a personal question? Of course you can choose not to answer this question.

How did you come to the decision of have the Transplant?

Years ago my MELD SCORE was 17, my Specialist wanted me up on transplant list, I told him no. Over the years I have fought so hard not to go there (Transplantation), scares me. Although we have friend that had liver transplant 7-8 yrs ago and is doing fantastic, he and wife just got in from a Japan family wedding, and they travel all over the world, hope all does just as well.

Good luck, hoping healthy and Speedy recovery.

Stay in touch with us, we’re all wishing the best.

Love, Peace, Graditude, and Light

SunnyXXOO

Prettyeyes79 profile image
Prettyeyes79 in reply to SunnyXXOO

At first I was hestinate in being on the transplant list. My score was only a 6 but my Hepatology dr told me just be on the list in case ur liver gets works. It’s jus just being on the list for couple months years but they take the higher risk first.

So my husband persuaded me to go on the list he say it doesn’t hurt we don’t know if my liver will even get better.

I did the two days classes one day you meet all the drs and go for exams to make sure you’re a candidate the around class is u meet with other liver patients who waiting and they tell you what to expect during surgery

They send you a letter if you been approved to be on the list. I waited 6 months when I got the good news. I thought it be years since my score was low. But it happen, surgeon said I can live a normal life. After transplant no more itching

Vivaldii profile image
Vivaldii

Great news I wish you a speedy recovery

Prettyeyes79 profile image
Prettyeyes79

Thank you

Sachin1234 profile image
Sachin1234

I haven’t had trasplant either but it will come back again and u have take urso again or keep taking it life long..

congratulations for your 2nd life 🤗

Prettyeyes79 profile image
Prettyeyes79

Surgeon said slim chance if it does it be 20-30 yrs

Yes I have to take Ursodiol

gwillistexas profile image
gwillistexas in reply to Prettyeyes79

Focus on healing & put that out of your mind. You have a new liver & many healthy years to dream about. Take care & please let us know how you’re doing. 😊🙏🏻

Prettyeyes79 profile image
Prettyeyes79

Thank you for the wishes. I wish you the best too and hope this disease don’t take over your life. I very grateful for the surgery. After surgery I have no itch. I have terrible itch for 5 yrs and now it’s gone. I’m crying of joy

gwillistexas profile image
gwillistexas in reply to Prettyeyes79

You’re welcome & thank you ☺️

Yankeerose3 profile image
Yankeerose3

That's awesome. Congratulations! I heard that IF PBC comes back, it would be several years. Enjoy the new you and try not to worry. Just do what the Dr says. Hope the recovery is fast and without complications. :)

Prettyeyes79 profile image
Prettyeyes79 in reply to Yankeerose3

Thank you so much I hope it won’t come back so far no itching no yellow eye

hayleyey profile image
hayleyey

Great news take care xx

hi Prettyeyes, It seems 26smiths reply was for you, not me?

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