Monday, August 22, 2011

Shelby WILL be listed

****What you are reading the girls are NOT aware of.  We have not told them yet.  Please be sensitive to this****

Today I heard the "official" word from Chicago that they WILL be listing Shelby for a liver transplant and appealing to UNOS for exception points due to the Hepatopulmonary Syndrome.  Exception points are points given for certain complications.  Specific labs & information are used to give a person a "score" that determines their place on the waiting list.  When you have complications that are not represented by that score then your doctor can ask for exception points.  Your case is then reviewed by UNOS and either they give the points or they don't.  HPS (Hepatopulmonary Syndrome) gives you automatic exception points.  From what I'm reading, 28 to be exact.   We knew this day was coming at some point, but now that its here we are scared.  We are very optimistic that Shelby's transplant will make her feel better, but sometimes you are just trading in one set of problems for another.  There is really no choice in this situation, though.  HPS is not reversible any other way.  Liver transplant is the only way to make it stop.  Oxygen was delivered yesterday by home health.  Shelby is to use it for comfort.  It doesn't help her oxygen saturation, just can make her more comfortable.  We are not ready for this, yet have been preparing for it for 9 years.  I just want my Shel-belle to be better.  I will keep you all updated on when she is listed.  We would appreciate prayers.  Thank you.