Primary biliary cirrhosis

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Regular Member

Date Joined Jul 2009
Total Posts : 192
   Posted 7/27/2009 2:29 PM (GMT -6)   
I just found this forum today, wished I had seen it earlier.
My wife is suffering from end stage liver disease (primary biliary cirrhosis) as a result of autoimmune hepatitis. Her liver enzyme levels have been high for several years, but she only began showing symptoms of liver failure this past December.  She has been hospitalized three times since February, each time admitted via the ER for high ammonia levels, and/or aseties. Currently she is taking a total of 22 prescriptions each day, and am told will be placed on the liver transplant list at Methodist Hospital Liver Institute in Dallas, Tx the first week of August, as she has recently successfully completed all of their screening procedures.  Her current MELD score is  13, and she is still able to work, but I don't know for how much longer, as she has lost over 50 lbs this past year, and seems to grow weaker each month.  We have her ammonia levels under control with 60 mg of lactulose twice daily, and her fluid retention is also under control with other medications. I worry though  about her continued weight loss, as she has little or no appetite. Due to the fact that her MELD score has remained at a constant 13 for the past 7 months, I am told she will not be considered for a transplant until it gets into the 20's. I just wanted to post in hopes of communicating with someone else going through this ordeal with a loved one, as I am her primary care-giver. confused

Veteran Member

Date Joined Oct 2007
Total Posts : 502
   Posted 7/27/2009 3:20 PM (GMT -6)   
Hi Charlie92 and welcome to HealingWell. I am so sorry that you and your wife are suffering with liver disease. There are others on the site that can respond more accurately about the transplant and meld score than I can. I will suggest that you speak with your wife and Dr about a medication called Megace. It will help to increase her appetite. My mother was put on it at my request because she too had no appetite and was profoundly underweight. It was a battle at first because she didn't want to take another pill but in the end she took it. It really helped her to maintain the weight she had and she actually gained a few pounds.
It is overwhelming when you are the primary caregiver too. Plese post anytime you like. We are all here for you. I think you will be pleased at how knowledgable the members are and how loving and caring they are.

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."


Regular Member

Date Joined Jul 2009
Total Posts : 192
   Posted 7/27/2009 7:18 PM (GMT -6)   
Thank you so much for this information, I'll certainly mention it on her next Dr's visit.  I know she will not be happy taking another pill, but if it will help, it would be worth it.

Elite Member

Date Joined Jul 2005
Total Posts : 12014
   Posted 7/28/2009 11:14 AM (GMT -6)   
Seattlekim, welcome to the forum!  Thank you for the info on the support group for PBCers.  Could you tell us something about your situation?

Forum moderator - Hepatitis
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Regular Member

Date Joined Jul 2009
Total Posts : 26
   Posted 7/28/2009 11:30 AM (GMT -6)   

Being a caregiver is one of the toughest jobs out there. I've been taking care of my sister for a year and nine months. Her liver failure started getting bad back around Christmas.

She probably only has between 4 to 6 months left. But I've discovered that it is the quality of time not the quantity that really matters.

It's great that your wife will soon be on the transplant list. Hope is so important. Keep us posted on her status and if you have questions don't hesitate to ask. Finding this forum has really help me keep it together. We all need someone to talk too.


Regular Member

Date Joined Jul 2009
Total Posts : 192
   Posted 7/31/2009 9:52 AM (GMT -6)   
I would like to thank everyone for their support and input. Yes she is on Actigall and has been for years. She has good weeks and bad weeks where she just simply runs out of gas around the end of the work week, however she is determined to continue working. I have been giving her Procrit injections once weekly for the past two months, and it appears to have boosted her energy level, as she has been very enemic. Her hemoglobin has also risen since these injections. The Liver Institute has also assigned her a "mentor", who is a lady that has successfully had a liver transplant. They talk on the phone about once a month, and her advise and support has been very helpful.
I will also check out the other support groups that have been suggested. Thanks again for your support.

Forum Moderator

Date Joined Apr 2007
Total Posts : 835
   Posted 8/3/2009 12:06 AM (GMT -6)   
Hi Charlie,

So sorry to hear that your wife's disease has progressed so far. I'm said she has ESLD from AIH and in parentheses you put PBC. Does she have PBC with AIH overlap or AIH with PBC overlap? I have AIH alone (thus far) so I was wondering how the ESLD happened. Was she off treatment after being in remission with the AIH? Or did it simply progress? It sounds like you are a wonderful husband and you take very good care of her. If she forgets to mention it because of everything going on and her trying to remain in the workforce...I'm sure she agrees. Being a single mom with a chronic illness gets scary when I think about what may happen if mine progresses. I know that even if my ammonia levels were up high and caused me to not be able to truly voice my thanks, that the one taking care of me would know I really did appreciate it. So I'll thank you from her for being her rock!
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
meds: Azathioprine 100mg

Regular Member

Date Joined Jul 2009
Total Posts : 192
   Posted 8/3/2009 6:59 AM (GMT -6)   
She was originally diagnosed years ago with AIH, but over time it slowed progressed in PBC. In retrospect, my advise is to follow your doctors orders, take your meds, and you may never progress to where my wife is today. Her condition certainly didn't develope overnight, as this has been an on-going progress over many years.
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