It’s been a difficult few days. We’ve run into so many frustrations and false starts, that I haven’t had the heart to post. Also, Jim ordered me to take a bath and a break from the blog because, as he put it, “I think you’re spiraling downward.”
Maybe he’s right. Maybe I’m finally losing it. I do know that I’ve been walking around feeling frustrated and angry and completely ineffectual. I can’t seem to let the CDPHP denial rest. Anytime we hit an obstacle, I feel renewed rage with the various medical directors who denied us the transplant at Westchester – even though the (rapidly diminishing) rational part of my brain knows that ALL of this craziness can’t possibly be due to three strangers in a board room somewhere.
So, to sum up, I spent Saturday in the E.R. at Westchester because Ana’s fevers are coming back. If you follow this blog, that’s not news. One of the frustrations about THAT experience was the E.R. at Westchester apparently could not access the main computers at Westchester so I had to retell Ana’s sorrowful tale to at least three harried doctors/residents/nurses. By the third time I was seriously ready to sign Ana out of there. I of course blamed CDPHP for the whole experience because if they had APPROVED the transplant at WESTCHESTER than she would’ve been LISTED already and the fevers wouldn’t be coming back and…yeah, I know, that makes no sense. It’s also not CDPHP’s fault that Westchester’s computer system is apparently pre Y2K.
So let’s fast forward to Monday. Ana’s home, she’s still getting fevers, her bloodwork is completely normal including her white count (hooray!) except for slight elevation of “inflammatory markers” whatever that is – but it probably means the tumor is waking up again. So we have to get this kid listed for transplant, but in order to do that you need a bunch of tests. Now, Ana got all of these tests at Westchester but for some reason the coordinator at Columbia was missing like three of them including a blood type and an Echocardiogram.
I know Ana had a blood type done because she had a blood transfusion. Why the hell wouldn’t that be in her chart? I don’t know. The coordinator at Columbia doesn’t know. But it took a lot of phone calls from Columbia and a few from me to track down most of these tests and I’m still not really sure if they ever found the blood type. Of course I blamed CDPHP. They wouldn’t need to track down these tests if they didn’t force us to transfer and, and…and even I have to admit I’m more annoyed at Westchester than CDPHP for this one.
So Dr. Kato’s assistant scheduled Ana for a consult today at 3:30, but she since they couldn’t find some of the tests they needed, she informed me she would have to have blood drawn from the vein. And, if you’ve ever had blood drawn from your vein, you know it hurts. She has a catheter from which blood can be painlessly drawn – so I wanted to know why they couldn’t draw from the catheter.
Columbia person, “That needs to be done in the infusion center and it’s closed on Tuesdays.”
Me, “Can we come in on Wednesday?”
Columbia person, “You’d have to come in at 9 a.m. on Wednesday. It’s the only time Dr. Kato has available.”
Me, “That requires we get up at 5 a.m. with no guarantee we’ll make it on time.”
Columbia person, “I can try to see if there’s another time.”
Me…beginning to cry, “Forget it, just leave the appointment at 3:30 on Tuesday.”
Ana (who is sitting in the room during this call), “Mom, it’s okay. I’ll get the blood taken from my stupid vein.”
Blood can only be drawn from a catheter by an R.N. in a clinical setting such as an infusion center or a hospital. Thus even though Ana can get blood drawn WITHOUT pain, it’s not easy to do as an outpatient. I know this doesn’t seem like that big of a deal, but it breaks my heart a little bit each time Ana has to get stuck with a needle, particularly when I know it can be avoided.
And so it goes. I cried for the rest of the day. I felt like a failure. I couldn’t stop my kid from getting another needle. It should’ve been a simple thing and I failed. But this morning I awoke with a renewed sense of purpose and the hope that AT LAST we’d meet Dr. Kato and Ana would finally get listed for transplant. And that probably would’ve happened, but right before we were about to leave the phone rang. It was Dr. Kato’s assistant canceling our appointment because he was called in to do a transplant. So we have to go in tomorrow at 9:00 a.m. – yet another early morning drive.
For some reason, this was my undoing. I got irrationally mad at CDPHP (if we were at Westchester this never would’ve happened), then realized that it could just as easily have happened at Westchester because it’s not like you can schedule a liver transplant. I realized this but I was still mad at CDPHP and, well, I’m sitll mad. This makes me feel like a failure. Why can’t I let it go?
Self-loathing is a slippery slope. Once you start down that road, it’s hard to change course.
I failed to save Ana the pain of another shot.
I failed to get CDPHP to approve the transplant at Westchester.
I failed to keep my shit together when talking to the coordinator at Columbia.
Failure at every turn. Failure to do more than a few hours of work a day. Failure to stay on top of the laundry. Failure to exercise. Failure to eat healthy. Failure to decorate for the holidays. Failure to be a productive, functioning member of society.
I feel like I’m battling with myself as much as I’m battling the many frustrations and inefficiencies of the healthcare system. And that’s not good. So today I called a therapist. I’ll start seeing her next week. Meanwhile, fingers crossed, Ana will see Dr. Kato and get listed for tranplant tomorrow.