There was a lot going on today and I met with a bunch of new people. Jim’s here now and I’m about to leave to spend a few days at home and hopefully catch up on some work and precious Emily-time. I just wanted to post a quick update since there is a lot going on. I’ll do this by listing the people I met with, in the order I met with them.
11:00 am (ish): Dr. Elckmacken (Oncology Fellow) – I filled you in on what she said in my last post. Basically, they are pretty sure they have a diagnosis. They are doing one more test for a marker which will tell them if the tumor is responsive to a specific type of chemo (I found this out later in the day) and we should have the pathology report by tomorrow morning.
11:30 am: Mimi – This is the social worker for the transplant team. She informed me that my insurance likely won’t be enough to cover the exorbitant cost of the anti-rejection medication and also dropped the bomb that the liver team is not actually in-network in my insurance plan. It looks like this won’t be a problem though, because once Ana is in the hospital for 30 days she will qualify for emergency medicaid which the hospital accepts.
1:00 pm (ish): Rose, the oncology social worker introduced me to a young man in charge of getting Ana set up on Medicaid (I didn’t get his name). I signed a bunch of stuff and need to gather some documents tomorrow to facilitate the process. Even if my insurance agrees to cover the liver transplant at this facility, Medicaid will help cover the expensive medication. I’m also going to see if I can switch insurance to a plan with better coverage.
1:15 pm: I met with Susan, the liver transplant coordinator. She went over a ton of stuff and gave me a folder full of information about organ transplants including donor info and frequently asked questions. My homework is to read through all that stuff and get back to her with any questions.
2:00 pm (ish): I met with Dr. Lee from infectious disease. He asked me some questions about exposure stuff (has Ana traveled far? has she swum in fresh water streams and lakes? is she up to date on her vaccines)? He’s ordering a test for some sort of rare parasite which is transmitted by snails which can apparently, on rare occasions, cause tumor growth like this, but the snails are not usually found in the U.S.
It looks like tomorrow will be a busy day for Jim. He’ll be the one here when the final pathology report comes in, and he will meet with Doctors Hochberg and Elmacken. I will post an update with the diagnosis as soon as we get that report! Thanks to you all, as always, for your continued support and love.