Fiona will be going back to the transplant center for re-evaluation on the 10th. We are fully expecting them to drop her from the transplant listing because of the biopsy which is very frustrating. I just don't understand why they keep telling us that biliary atresia is so different in each patient but then tell us Fiona doesn't follow the textbook definition so her problems can't be from the liver disease. There is no way on any planet this is OK. There is no way bleeding lungs are acceptable and how can they say with upmost certainty that the liver isn't causing this problem. Her lungs never bleed before. Praying the experimental drug comes on formulary VERY soon. It is her only hope now and we are going to have to fight to get it.
What makes me even more crazy is that an appointment is required. So our insurance is going to pay thousands for them to turn her down and I am going to have to miss my student's first day of school. This whole transplant world is just so ugly. So many people are caught in its madness. Lives are being destroyed. I hope research will solve the organ shortage one day. This is just not fun. Even knowing this was going to happen doesn't make it any easier. Getting tired of the fight, trying to convince doctors there is something wrong, that the problem is serious. One day I'm going to contact every doctor that ever said there is nothing wrong, oh it is ok--you can manage it. I'm tired of appointment after appointment and told there is nothing and then all of sudden they find out what is wrong and it is a big emergency. I know we have a good team of doctors with our insurance but outside, the transplant centers are just so difficult. It is a very cold and heartless environment where people's lives are just not valued. As I was once told, not everyone is entitled to a transplant. You have to live the best you can and last as long as you can. What makes Fiona's life so invaluable to them? That just isn't right!
Peg
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