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kariulrich

Liver Transplant for Primary biliary cirrhosis (PBC)

Posted by @kariulrich in Transplants, Aug 26, 2011

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

Tags: liver disease, transplants, Autoimmune diseases

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rosemarya

Posted by @rosemarya, Aug 30, 2011

Hi Kari, I had a successful liver/kidney transplant at Mayo in 2009. My health is restored, and I feel better than I ever remember feeling. I would be happy to try to help you in any way I can.

scottiedog1

Posted by @scottiedog1, Sep 13, 2011

Hi Kari,I had a liver transplant in 2007.Everything went great and the very next morning I could tell a big difference in the way I fell and look.It has been 4 years now and still doing good,just got to lose about 50 pounds.If you have any questions or concerns feel free to ask!

kariulrich

Posted by @kariulrich, Sep 27, 2011

Thank you so much for responding- I do have a question.Do you know, How is it determined if you are a candidate for a transplant? How does age factor into it? I have heard that you cannot be a liver transplant candidate (even if your family is willing to donate part of their liver) if you are over the age of 70? If you have no other health problems this seems like a young cut off. I would have thought it would be determined by each pt, not age.

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paybills7743

Posted by @paybills7743, Oct 10, 2011

Yes how do you lose weight on predisone?

karenb

Posted by @karenb, Sep 20, 2011

Hi Kari, I just had a liver transplant in May of this year (2011). So far tests are good. Unfortunately liver disease has resulted in bone loss, thin skin, and diabetes. Hope that over time this will get better!

rosemarya

Posted by @rosemarya, Sep 22, 2011

Congratulations on your transplant and good test results!!
I, too, experienced the symptoms that you have listed. In addition, I also had hair loss and brittle nails. I had insulin in hosp. for prednisone related diabetes. By the time of my 4 mo. check-up, my numbers were back to normal. Also my skin, hair, nails returned back to normal within the first year. A good body lotion, healthy diet , and exercise are essential. As far as the bone density loss - being female and post meno. are working against me, but I have improved slightly since transplant and my level is just above osteoporosis.
The dermatologist said I could take Biotin for my nails, hair. I am taking Calcium with D for my bones.

kariulrich

Posted by @kariulrich, Sep 27, 2011

Would anyone share with me what age you were when you received your transplant?
I am not understanding the age cut off of 70. That seem so young. Also any good links or medical articles that anyone could recommend would be appreciated. Thanks

dikglass

Posted by @dikglass, Sep 29, 2011

Dear Kari, I rec'd a new Liver at Mayo Jackville on aug 4 2011 in a record 2.5 hour
surgery.......if you are in good shape or your friend is the Mayo will help.
I am 58 the problem is that as you get older the recuperative powers of your body slows and the anti rejection drugs are very strong and tough on you

DG

Anonymous likes this
kariulrich

Posted by @kariulrich, Oct 4, 2011

Thank you! I appreciate you getting back to me. What kind of side effects have you had from the anti-rejection drugs?

Posted by Anonymous-3d653674, Oct 5, 2011

Kari, Look at the website for United Network for Organ Sharing: http://www.unos.org This is the national organization that oversees the procurement and distribution of organs. You will find helpful links and transplant data. Also look at the websites for the regional/states' organ donor affiliates; they have lots of useful information that is easy to read and understand.

susihere2 likes this
paybills7743

Posted by @paybills7743, Oct 10, 2011

I have I can Help!

marigold

Posted by @marigold, Nov 22, 2011

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

Anonymous, Anonymous, ram like this
donna2011

Posted by @donna2011, Jan 8, 2012

i also was diagnosed in stage 2 does any one know how many stages there are? and how fast they advance no doctor will tell me

susihere2

Posted by @susihere2, Jan 27, 2012

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.

donna2011

Posted by @donna2011, Jan 27, 2012

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

donna2011

Posted by @donna2011, Jan 27, 2012

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

susihere2

Posted by @susihere2, Jan 27, 2012

bink

Posted by @bink, Jul 17, 2012

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

Anonymous likes this
upnati

Posted by @upnati, Dec 7, 2011

My mom used to babysit for a guy who donated to a complete stranger about 10-15 years ago. Says he has never been sorry. Had a few complications during the process, but has done fine. He is a well known pencil artist in my area.

Anonymous likes this
susihere2

Posted by @susihere2, Jan 27, 2012

I was diagnoised with PBC in the summer of 2011. There is a wonderful site full of info about PBC and it also has a daily digest full of PBC patients, pre & post transplant. The site is pcbers.org, they also have a facebookpage pcbers. Good luck with your journey.

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glevans

Posted by @glevans, Apr 13, 2012

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.

avonlady38

Posted by @avonlady38, May 1, 2012

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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rosemarya

Posted by @rosemarya, May 1, 2012

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.

cindia

Posted by @cindia, Oct 8, 2012

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.

Anonymous likes this
cindia

Posted by @cindia, Oct 8, 2012

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

melookingin

Posted by @melookingin, Jul 18, 2013

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?

bink

Posted by @bink, Jul 17, 2012

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 .

kathyhunt

Posted by @kathyhunt, Apr 21, 2013

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.

deeann

Posted by @deeann, Sep 12, 2015

How tough was it on your son and how long was his recovery? What state?

wmoser2613

Posted by @wmoser2613, Sep 29, 2013

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

surfah00

Posted by @surfah00, Oct 16, 2013

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

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