completely confused

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amberlight
New Member


Date Joined Mar 2008
Total Posts : 16
   Posted 5/6/2008 1:28 PM (GMT -7)   
I posted here a month or so ago about my mother, who has cirrhosis. She had a checkup with her specialist in the city today and he told her that her most recent bloodwork was all normal. He then said "we really have no proof that you have primary biliary cirrhosis because your blood tests are all negative". Yet she was diagnosed with this disease two years ago when she had problems with esophagal varices. She had a biopsy done at that time, and the doctor mentioned fibrosis of the liver. I'm completely confused. I'm very glad her bloodwork indicated no problems, but this all seems very vague and inconclusive. Can anyone shed any light on what might be going on?

Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 5/6/2008 3:18 PM (GMT -7)   
That is good new's Amberlight tongue , The liver can regenerate itself so maybe the disease in remission! 
 
Judith

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 5/7/2008 6:00 AM (GMT -7)   
Amber, I understand your confusion and I wish Dr's would take that extra few minutes and explain things so that people clearly understood what the heck is going on. Judith could be right...the liver may have regenerated itself. There are other possibilities but I hope the former is what is going on. Does she have symptoms of any kind right now or is she really doing well currently? Does she have a follow-up appoinment? If she is going to see the Dr again I would make a list of pertinent questions to ask him and then write down the answers. It helps prevent any confusion or the possibilty of forgetting.
 Shelly
 

“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."

 


amberlight
New Member


Date Joined Mar 2008
Total Posts : 16
   Posted 5/7/2008 6:13 AM (GMT -7)   
Thanks for your comments! Mom currently doesn't have any real symptoms except she does tire easily...but she's been like that for a long time. She also has severe osteoporosis. She had a couple of weeks just after Easter when she wasn't feeling well -- no appetite, no energy, dark urine, just feeling generally lousy, etc. -- but she seems better now. She doesn't have another doctor's appointment until mid-August, and then she is scheduled to have a gastroscopy (sorry if that's not spelled right) to check for varices in early September. Thanks again for your responses!

CaryF
Veteran Member


Date Joined Nov 2007
Total Posts : 505
   Posted 5/7/2008 7:13 AM (GMT -7)   
Amber, One can have advanced cirrhosis with completely normal blood results. The only way to understand the true condition of the liver is with a biopsy.
If she had fibrosis with the last one 2 years ago I'd say its time for another one & more current results.
Hope this helps.

Cary

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 5/8/2008 5:26 PM (GMT -7)   
Amberlight

Cary is right about blood indicating normal results and things still progressing. My medications have stablized my AIH and blood work has been in the normal to only slightly elevated range for over nearly one year yet in January when I had my biopsy they found that my disease had progressed into stage 1 cirrhosis. It is unfortunate that the doctor did not explain this to you and your mother. Hopefully during her follow up visits you can ask questions about further testing.

Lucy

amberlight
New Member


Date Joined Mar 2008
Total Posts : 16
   Posted 5/9/2008 6:19 AM (GMT -7)   
Thanks for your comments. I assume when blood levels are normal and the person is feeling OK it means the cirrhosis is compensated? Anyhow, the doctor doesn't want to see her again until September, so I guess he's not too worried.

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 5/10/2008 3:56 AM (GMT -7)   
amber, may I suggest that when she sees the Dr that she request a liver biopsy? It is the only sure way for an accurate assessment of the liver. I know that I would want to know for sure what the heck is happening with my liver. If she does do it I think it will put some health issues and questions to rest one way or the other. Good luck
 Shelly
 

“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."

 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/10/2008 12:31 PM (GMT -7)   
I totally agree with Cary and Shelly. A biopsy is the only sure way to know what is going on with the liver. I was always told there was no sign of cirrhosis from the first biopsy I had in '93 and through innumerable CT and MRI scans since then, not to mention tons of blood work. However, when a biopsy was done last May during liver cancer surgery, I was told that I do have mild cirrhosis. My liver enzymes and AFP have never been way out of line, and yet I have had liver cancer, and currently still have chronic active hep C and cirrhosis.

Connie
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