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Kari Ulrich, Volunteer Mentor
@kariulrich

Posts: 252
Joined: Jul 15, 2011

Liver Transplant for Primary biliary cirrhosis (PBC)

Posted by @kariulrich, Aug 26, 2011

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

Liked by Anonymous, Bmjohns

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Rosemary, Volunteer Mentor
@rosemarya

Posts: 1089
Joined: Aug 30, 2011
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
@scottiedog1

Posts: 1
Joined: Sep 13, 2011
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!


Kari Ulrich, Volunteer Mentor
@kariulrich

Posts: 252
Joined: Jul 15, 2011
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.


paybills7743
@paybills7743

Posts: 4
Joined: Oct 10, 2011
Posted by @paybills7743, Oct 10, 2011

Yes how do you lose weight on predisone?


Karenb
@karenb

Posts: 3
Joined: Sep 20, 2011
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!


Rosemary, Volunteer Mentor
@rosemarya

Posts: 1089
Joined: Aug 30, 2011
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.


Kari Ulrich, Volunteer Mentor
@kariulrich

Posts: 252
Joined: Jul 15, 2011
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


Dik Glass
@dikglass

Posts: 1
Joined: Sep 29, 2011
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

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Kari Ulrich, Volunteer Mentor
@kariulrich

Posts: 252
Joined: Jul 15, 2011
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?


Rosemary, Volunteer Mentor
@rosemarya

Posts: 1089
Joined: Aug 30, 2011
Posted by @rosemarya, 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.

Liked by susihere2


paybills7743
@paybills7743

Posts: 4
Joined: Oct 10, 2011
Posted by @paybills7743, Oct 10, 2011

I have I can Help!


marigold
@marigold

Posts: 7
Joined: Nov 22, 2011
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


Donna2011
@donna2011

Posts: 3
Joined: Jan 08, 2012
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
@susihere2

Posts: 3
Joined: Jan 27, 2012
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
@donna2011

Posts: 3
Joined: Jan 08, 2012
Posted by @donna2011, Jan 27, 2012

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

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