Good news for a change

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Regular Member

Date Joined Jul 2009
Total Posts : 192
   Posted 2/16/2010 2:44 PM (GMT -7)   
wink My wife's tongue is now healing, and she can eat with little or no pain. At her last Hepatologist appointment I mentioned how she hated latulose, and the Dr suggested "Kristalose" powder. He gave her some samples and she doesn't mind taking it at all. She is taking 20g in the mornings, mixed with only about 4 oz of water, and says it has little or no taste. She now has been given a Rx and we have about a 2 month supply. It seems to be working a lot better than the 60 cc's of lactulose she had been taking each day.
Her Insurance RN case worker called me last Friday and informed me that  she had been approved to be tested at Baylor All Saints Hospital in Fort Worth, so that she can be duel listed in both Dallas and Fort Worth. I don't know how this works with UNOS, but since we live in Fort Worth, it will be much more convenient if we can be in their program. I'm still upset at her being de-activated in Dallas last Sept without us being notified.  Now we have her ear surgery in April to worry about, hopefully it will be successful and she can get back on the list.  I believe that if it will prevent all these recurrent ear infections, she will be much healthier. It's just really hard managing ESLD, diabetes, and ear infections at the same time.  Please wish us luck.

Elite Member

Date Joined Jul 2005
Total Posts : 12014
   Posted 2/16/2010 2:50 PM (GMT -7)   

Charlie, thanks for the update and the good news!  Also the info about Kristalose.  You are making progress, however slowly.  I think you are right about the ear surgery putting an end to the ear infections. 

Please continue to keep us updated!



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

Forum Moderator

Date Joined Apr 2007
Total Posts : 846
   Posted 2/16/2010 4:14 PM (GMT -7)   

Hi Charlie,

I'm so happy to hear that her tongue has finally started healing.  And that you've found something better than the lactulose for her.  Hopefully after the ear surgery, things will get even better.

My fingers and toes are crossed for you both!


Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
meds: Azathioprine 100mg

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