Been gone for a while! Update on PBC (primary biliary cirrhosis)

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FinnstersMom
New Member


Date Joined Mar 2009
Total Posts : 18
   Posted 7/16/2010 9:50 AM (GMT -7)   
Hi all - I haven't been on in about 6 months but wanted to give a quick update on my PBC, hopefully it will give others hope.

Quick update: I'm 37, female, diagnosed with PBC a year ago (but had it longer, undiagnosed). My first pregnancy brought the conditions to light and allowed me to get diagnosed early. I'm being treated by the Mayo Clinic in Jacksonville. I've been on Urso for about a 1 1/2 yrs. It took that long to finally begin seeing positive results. My last visit to Mayo revealed my levels have been cut in half from their highest point. Still not normal, but I think this is my new normal. Levels are in the hundreds, not thousands, thank God!
We have ruled out PBC with AIH after a run of prednisone (hate that stuff!), so now it's just PBC.

Mayo doc won't give me prognosis or idea of what the future may hold, which is frustrating. I guess they don't know all, but I'm hoping I can get a nice long run out of this liver, or that within 10 years there are more advances to treatment.

We'd like to have a second child, but both my husband and I have some big concerns about that. More docs to talk to before we make our final decision.

I've adjusted my diet, but have gotten really slack on it since christmas, and I'm feeling the results of that thru itchiness. Between the Urso, diet and getting plenty of sun (vitamin D) I think it's all working together.

Would love to hear from other PBC patients, or caregivers!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/16/2010 10:13 AM (GMT -7)   

Hi, Finnstersmom!  Good to see you back here!  Who are you seeing at Mayo?  Are you being seen in the Transplant Dept. in the Mayo Hospital Bldg.?  That's where I'm seen, although not a transplant candidate at this time.

Hugs,

Connie

 


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


FinnstersMom
New Member


Date Joined Mar 2009
Total Posts : 18
   Posted 7/16/2010 10:51 AM (GMT -7)   
Yes, I'm in the transplant program but no where near being a transplant candidate yet (I hope!). What are you being treated for?

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/16/2010 11:01 AM (GMT -7)   

Hep C, cirrhosis, and f/u of liver cancer (treatment and surgery by Mayo in '06-'07.)  I see Dr. Denise Harnois.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


FinnstersMom
New Member


Date Joined Mar 2009
Total Posts : 18
   Posted 7/16/2010 4:44 PM (GMT -7)   
Connie - are you happy with Dr. Harnois? I'm so-so about Pungpapong. I struggle to get information out of him and unless I ask a direct question I get no information about disease or prognosis. Everything I know about it I've learned myself from my own research. I feel unsettled after my visits with him.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/16/2010 4:59 PM (GMT -7)   
Does he have a problem with English? Dr. Harnois is wonderful! She goes over all my results and answers any questions I have (such as the new hep C treatment that comes out next year), and never rushes me. She's extremely bright. The only downside is that she is booked up months in advance, so I dare not miss an appt. with her, or have to go in unexpectedly for anything. She's just very in demand. When the oncologist made the referral to her, he said she was "tops" in hepatology. And she is. The other thing she always does (without my asking!) is to send me copies of all my blood work and MRIs, as well as her office visit notes. You might want to call the Transplant Dept. and ask about transferring to her.  I just checked her profile on Mayo's web site and one of her interests is PBC, whereas your current doctor seems to be only interested in transplant.

Hugs,
Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 7/16/2010 9:23:21 PM (GMT-6)

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