About
On May 12, 2004 Amanda recieved a double lung transplant at USC in California. After so many years of being chronically ill with Cystic Fibrosis she was finally able to do all the things she had been dreaming of. Hiking, bicycling, long walks, swimming in the ocean and most of all playing tag with her niece and nephews Alex, Jake and Sophie. She began a regimin of exercise, eating and doing everything she could do to make herself stronger. In August 2006 she decided to load her car up and journey cross county to return home to be with her family and lifelong friends. Everything went great until August of 2007 when she went on a hike and began to get short of breath. Through her monthly polmunary test her lung volumes had decresed a little. Amanda and the Doctors were watching her volumes closely and discovered she was experiencing chronic rejection. Chronic rejection can’t be seen through the usual testing such as x-ray, catscan or bronchoscopy. It can only be detected by decreased pulomonary volume. After extensive research Amanda decided to undergo a treatment of thymoglobyn which actually dropped her white blood cells to zero and when they redeveloped they would stop attacking her lungs. After 10 days in the hospital she went home and waited. It was only a matter of weeks before her tests showed that the treatment had not been succesful. Her next option was photopheresis which consists of her going to the hospital over a 7 month period where they actually take 50% of her blood, seperate the white blood cells from the red, the red cells are transfused back to her and the white blood cells are radiated and then returned to her as well. The purpose of this procedure is to shock the immune system and stop the rejection. Each procedure takes about 5 hours and she has this done twice a week. It is not a treatment that you would see an immediate change or improvment. It can take up to 3 to 4 months. When it does begin to work it only stops the rejection at that point. She can not regain any lung volume she has lost up to that point. To regain her lung capacity it will require a new transplant. She is currently undergoing reviews, tests and procedures to verify she is an acceptable candidate to be placed on the list. We should have an answer by the end of this week.
Frank (dad) & Laurie (mom)