Liver Transplant for Primary biliary cirrhosis (PBC)

Would like to hear from anyone who has been through a liver transplant. Both donor and recipient. Thank you- Kari Ulrich

Liked by Bmjohns, Anonymous

@marigold

Kari- my sisters daughter has just been diagnosed with Primary Biliary Cirrhosis Stage two- and am sure she would like to be incontact with you. Please private message me so I can send your email adr to her. (I’ll have to get it from my sister). Marigold

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There are 4 stages of PBC, the last stage ending with ESLD, cirrohsis. It is a very slow progressing disease, depending on the patient. Im awaiting a liver biop next week to stage me. PBC can be diagnoised by a blood test but, only a biopsy can actually tell what stage you’re in. pcbers.org/ has a great website and also a facebbok page. Good luck with your journey. There are many people on this site that has had PBC for over 20 years.

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@marigold

Kari- my sisters daughter has just been diagnosed with Primary Biliary Cirrhosis Stage two- and am sure she would like to be incontact with you. Please private message me so I can send your email adr to her. (I’ll have to get it from my sister). Marigold

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I had the liver biop 3 years ago it is not fun at all

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@marigold

Kari- my sisters daughter has just been diagnosed with Primary Biliary Cirrhosis Stage two- and am sure she would like to be incontact with you. Please private message me so I can send your email adr to her. (I’ll have to get it from my sister). Marigold

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is there a place where you can look up the stages and what happens with each one?

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@marigold

Kari- my sisters daughter has just been diagnosed with Primary Biliary Cirrhosis Stage two- and am sure she would like to be incontact with you. Please private message me so I can send your email adr to her. (I’ll have to get it from my sister). Marigold

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http://www.mayoclinic.com/health/primary-biliary-cirrhosis/DS00604 is a good place to start. Lots of info, also http://pbcers.org/

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I had a liver transplant in May, 2008 at 55 years old. The cause of the liver failure was NASH, or fatty liver. I was weeks away from death with a MELD Score of 43. (renal failure figured into that score). I am doing well but still have chronic kidney disease (not on dialysis). I am going back to Mayo – Jacksonville next month for my annual check-up.

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I am new here and in August of last year, I was diagnosed with AutoImmune Hepatitis and after a liver biopsy was told I have cirrhosis. I don’t understand, but my doctor told me that there are no “stages” of cirrhosis. You either have it or you don’t. But from what I see on here, it sounds like I have PBC. So confused. My numbers are normal now and my doctor says I should feel better than I did before I got sick, but I don’t. I am tired a lot, the heat makes me sick and now I can’t eat or drink certain things. At a loss and sad because I don’t know what to do anymore to feel better. Some days are good, just not as many as I would like. Any comments would be appreciated.

Liked by Anonymous

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@avonlady38

I am new here and in August of last year, I was diagnosed with AutoImmune Hepatitis and after a liver biopsy was told I have cirrhosis. I don’t understand, but my doctor told me that there are no “stages” of cirrhosis. You either have it or you don’t. But from what I see on here, it sounds like I have PBC. So confused. My numbers are normal now and my doctor says I should feel better than I did before I got sick, but I don’t. I am tired a lot, the heat makes me sick and now I can’t eat or drink certain things. At a loss and sad because I don’t know what to do anymore to feel better. Some days are good, just not as many as I would like. Any comments would be appreciated.

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It is no wonder that you feel confused. Many liver diseases share symptoms. You can read more about liver diseases om Mayoclinic.org. Go to the diseases and conditions link. I think you will find answers to your questions.
I understand how you are feeling. I, too, had similar symptoms when my liver was failing. (transplanted in 2009). My advice is to do all that is in your power to take care of yourself and try to eat and stay hydrated. Follow the advice of your doctor and work closely with him/her.

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Hi Kari , I am new here just thought i’d touch base with you as i also have Primary Biliary Cirrhosis diagnosed 2 years ago and now after another liver biopsy i am stage 3 and being reffered to mayo clinic and am also interested in similar info .

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@marigold

Kari- my sisters daughter has just been diagnosed with Primary Biliary Cirrhosis Stage two- and am sure she would like to be incontact with you. Please private message me so I can send your email adr to her. (I’ll have to get it from my sister). Marigold

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Hi Donna , i was diagnosed 2 years ago and then last month started feeling bad again and after another liver biopsy i am stage 3 now and being referred to mayo clinic . My GI Doc has told me there are 4 stages and that it progresses different for everyone . hope this helps . bink

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@avonlady38

I am new here and in August of last year, I was diagnosed with AutoImmune Hepatitis and after a liver biopsy was told I have cirrhosis. I don’t understand, but my doctor told me that there are no “stages” of cirrhosis. You either have it or you don’t. But from what I see on here, it sounds like I have PBC. So confused. My numbers are normal now and my doctor says I should feel better than I did before I got sick, but I don’t. I am tired a lot, the heat makes me sick and now I can’t eat or drink certain things. At a loss and sad because I don’t know what to do anymore to feel better. Some days are good, just not as many as I would like. Any comments would be appreciated.

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I was diagnosed with pbc in 1996 and still have a Meld score of only 14-15. I’ve been on the transplant list since early 2008.There ARE stages of cirrhosis: I am in stage 4 which is called “end stage” meaning my liver is not going to get any better – I have to have a transplant.
I also have good days and bad days. I agree with Rosemary A – rest whenever you are tired. I take a nap every day and take an epsom salts bath every evening. I use 2 cups e.s. per bathtub of water. I also add about 4 drops of lavender oil my friend makes. The bath makes your skin very soft!
Good luck, write me any time.

Liked by Anonymous

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@avonlady38

I am new here and in August of last year, I was diagnosed with AutoImmune Hepatitis and after a liver biopsy was told I have cirrhosis. I don’t understand, but my doctor told me that there are no “stages” of cirrhosis. You either have it or you don’t. But from what I see on here, it sounds like I have PBC. So confused. My numbers are normal now and my doctor says I should feel better than I did before I got sick, but I don’t. I am tired a lot, the heat makes me sick and now I can’t eat or drink certain things. At a loss and sad because I don’t know what to do anymore to feel better. Some days are good, just not as many as I would like. Any comments would be appreciated.

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Sorry. I forgot to add the epsom salts will draw toxins out of your body. Also they are good for joint pain, etc..

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Hi Kari, I received my liver from my son in Sept 2012. We are both doing great and would love to share any of our experience that you could use.

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@avonlady38

I am new here and in August of last year, I was diagnosed with AutoImmune Hepatitis and after a liver biopsy was told I have cirrhosis. I don’t understand, but my doctor told me that there are no “stages” of cirrhosis. You either have it or you don’t. But from what I see on here, it sounds like I have PBC. So confused. My numbers are normal now and my doctor says I should feel better than I did before I got sick, but I don’t. I am tired a lot, the heat makes me sick and now I can’t eat or drink certain things. At a loss and sad because I don’t know what to do anymore to feel better. Some days are good, just not as many as I would like. Any comments would be appreciated.

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hi was reading your post what foods are good to eat having hep-c cirrhosis 4 …does your liver hurt and also my spline is big ..i get so wiped out for weeks sometimes..do you feel the same?

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2I received a liver and kidney October 7, 2012 and am doing fine. Had some complications that required second surgery to fix, but otherwise have been doing wonderful. Would love to chat and find out how you are doing or need. Walr

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My mother had a liver transplant in 1996 at VANDERBILT hospital in Tennessee.

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