Another Long Day
Today sucked almost as bad as Tuesday. All four of us went to Westchester for Ana’s infusion of Pentamidine which she didn’t end up getting because CDPHP denied it as being too expensive compared to the alternative (three horse-sized pills she needs to take every Friday, Saturday and Sunday). We didn’t find this out until we were all standing in the tiny infusion room waiting for the medicine.
Instead, Ana got a prescription for pills which could have just as easily been called into our pharmacy to pick up locally. But why should the nurse worry about the fact that we had to drive for two hours to pick up a prescription? I’m sorry. I know I sound bitter. It’s been a rough week.
Well, ANYWAY, it’s good we went because we spoke at length to Dr. Hochberg. She recommended we meet with Dr. Kato and begin the process of transitioning Ana to Columbia for the liver transplant. I mean, we discussed the viability of keeping Ana at Westchester so Dr. Wu could do the transplant, but that digressed into a conversation about insurance companies, and what would be involved in switching insurance companies, and what insurance company we should, in fact, switch to and…basically…I’m tired of trying to predict the future.
The social worker that had worked with us while Ana was in the hospital (Rose) also came in and said Ana should have qualified for emergency medicaid, but apparently the medicaid coordinator did not get the paperwork she needed. So I said I’d sent it to the liver transplant coordinator (the same person who told me I needed to switch insurance companies). Rose said this wasn’t right, I’d had the wrong info, Medicaid should’ve covered it (the transplant) at Westchester if our insurance wouldn’t, should still be covering stuff our insurance isn’t and I need to get the info over there, etc. etc. etc. I adore Rose and admire her strong sense of outraged indignation on our behalf, but that doesn’t seem to be getting us anywhere in terms of staying with Dr. Wu and Westchester. We need to get Ana on that transplant list now and it’s clear that CDPHP is not going to approve the transplant at Westchester.
That’s a shame because, as I’ve said in the past, we’d like Ana to stay at Westchester for the transplant. Dr. Wu told us his patients had a 100% survival rate. The transplant team at Columbia claims a 98% survival rate for pediatric patients in the first year and a 96% survival rate over the subsequent 5 years after transplant. Ana knows these statistics as she is constantly reading over my shoulder when I’m researching this stuff. Today she said, “Well, let’s hope I’m not part of the 2%.”
I can’t imagine what it must be like to be 11 years old and have to think about that shit. That last sentence was contributed by Jim.
So, our options are running out. Let’s move on to a couple of happy thoughts. Ana’s bracelets came yesterday! We plan on handing them out to the 5th and 6th grade class as a thank you for their fundraising, and also at her benefit next weekend.
Ana also started her own blog – What’s Up with Ana. Please visit it and comment. I think it’s great that she finally wants to talk to people about her experience. She constantly amazes me with her strength.