Yesterday, Casey Jo had an echocardiogram and a CT done. We weren't there very long at all! Today, we were there a little later. It first started off with Casey having to get blood work done. (Only 2 tubes! Not 20 like she usually has to get!) Then she did her usual 6 minute walk, followed by her PFTs and blood gasses. Her PFT went from 24% last month to 29%. It's really strange, every time we have them done in Cleveland they are lower, then a few months later when we have them done in Pittsburgh they miraculously come up.
Casey Jo and Rachel
Our next stop was to see her social worker. Her super sweet social worker, Maureen, retired. So today, we met Rachel! Rachel is Casey Jo's new social worker. She seems really awesome! She briefly went over everything Maureen went over, and talked about some post transplant things. We were sad to see Maureen go, but we think we will really like Rachel!
Our final visit was with Dr. Pilewski. He talked with Casey about being ready for transplant. He talked a little about the scoring. (Many factors determine your "score" and where you're placed on the list.) Casey is still in that limbo stage. Even though she has a poor quality of life at the moment, she is still functioning. So if they decide to place her, she will be pretty low on the list. She has a pretty common blood type, which means it may be somewhat harder for her to get a set of lungs soon. He said the doctors will get together on Tuesday and will make their final decision then.
Our Great Uncle passed away this past week. On our way back from Pittsburgh we stopped in to pay our last respects. Please say an extra prayer for our family at this time. We appreciate all the prayers and encouragement you give Casey Jo!!!! We love you all very much!