I'm so sorry you have to go through this so early. It is a difficult thing researching centers. Like Skye said though, appeal to the insurance co.
Our ins. co. has a policy in place that if you can't find the care you need in network within a reasonable distance, for us I think it's a one hour drive, then they will send you where you want to go. Now this is for clinic appts., I am not sure what they would do for transplant. The closest I can get to that is Anna's post transplant care. After we returned to TX from Stanford, she needed post tx care here in the DFW area but UT Southwestern was not in network. I knew the ins. co. would make arrangements, I had more of a problem with UT Southwestern saying we had to go to San Antonio. UGH, I DON"T THINK SO! Anna's caseworker was right on it and got it all arranged.
Of course that's if UNC is where you want to go. Appeal to the ins. co and ask them what can be done. Just a bit of extra info. UNC Chapel Hill was Anna's first choice. For us it wasn't out of network, just out of region.
UNOS will tell you all the centers available and I believe give you some other important numbers to consider. When Anna did her research, she did it all on her own and decided where she wanted to go, she looked for centers that not only did lung tx's, but how many lung tx's they did per year and how many of those transplants were on CF'ers? What their one year and five year survival rates were. She told us she was ready about a year before the process was even started. After finding the centers, go to each centers individual site.
Anna's CF docs at UNMC told us early on that a support base is very important, that if you can be near family and friends it would be best. But, you also have to consider where you think is the best place for your child. We had no family in northern CA, so it was just Anna and myself. My husband and younger daughter stayed in TX, Anna's friends were in NE where she went to school. It is a hard thing to do, relocate all by yourself, but for us, we knew there was a reason we were in CA and believed that was where we were supposed to be.
Good luck in your search, you will find the right place for Reece and you will make it through.
