Hi Everyone -  I hope that everyone is ready for a little good news!  :-) 

 

         Brian had his usual follow up after labs with the GI specialist who reports that his kidney and liver values are much improved!  As is expected with autoimmune biliary cirrhosis, inflammation and the so-called "immune flares" wax and wain a bit.  This is good news because:

      You may be asking, "Well, if his liver is better, why won't it continue to improve"?  The reason that Brian still needs a transplant is because the majority of his liver tissue has converted to scar tissue that does not function.  When the autoimmune condition flares up the remaining liver tissue becomes inflammed and cannot work either. Scar formation continues and eventually destroys all of the liver cells. This is what has been happening these past several months.  Right now, Brians immune system is behaving itself so that the not-yet-scared liver tissue is able to work.  So, the trick is to capture lab results and calculate a MELD score during the times when Brian is not having a flare up.  This will allow him to meet the criteria for a live donor transplant.  (In case some of us have forgotten, a live donor is prefered because people do better overall, and the opportunity to use both a live or cadaveric donor greatly increases the donor pool). 

 

     There's more good news....Maureen was able to speak to their advocate from Aetna who said that she and Brian should hear from UCLA by Monday.  If not, they are to contact the advocate immediately to move things along.  Home health services have also been initiated to help Brian build his strength and stamina, provide for safety and care on those bad days, and generally get ready for transplant. 

 

      So, that's the news for now.  Our prayers are being heard and God is allowing our network to make progress!  Brian continues to struggle with pain and a lot of nausea.  He requires paracentesis to pull fluid from his abdomen every 7 - 9 days.  Brian had a great time when Pat and Steve Naish came over and spent about an hour playing and singing a couple of weeks ago.  (Sorry if I'm repeating but I don't remember if I mentioned this in a prior message or not).  We got a nylon stringed guitar to Brian last weekend and he played for the first time since October!  (Nylon because his guitar calluses are long gone)!  He is dreaming up "a whole new sound" in his head - if anthing comes out of his fingers we'll try to get it on tape!  As always, Bri and Mo are grateful for and look forward to the calls, cards and visitors.  They check the website often so please continue to post messages there.  I'll send a message just as soon as we have a date and time from UCLA when Brian will begin his evaluations there. 

 

       With thanks to God and in love of Brian,

Tina -Marie