Day 202 - in which I go redline

Yesterday, I said "Tomorrow, my job is to track." I had no idea how taxing the tracking would be. Since DHC sent all my material to the Dana Farber, but didn't send my diagnosis slides (6/14/12), I knew my diagnosis slides were at CMC. I called there and they said, "Nope, they're at DHC." I called back up to Lebanon and they said, "No, we sent them back on August 12'th." I called CMC back and they said, "Yes and we sent them to Dr. Cancion in Lebanon on November 30'th." I called Lebanon and asked for Dr Cancion who was not in and left a message on his answering machine. After an hour passed, I called Lebanon back and asked for Dr Cancion who answered and had a hard time at first understanding what I wanted. He suggested that I could call Dr. Hill instead of him to get my test results. Eventually I was able to explain that I wanted the block (that's the fancy name for the material evidently; people seemed to respond better when I asked for the block instead of the slides) and he told me didn't know if my material was at Lebanon or not, but his tech would know and gave me her name and phone number.

She said that she did have the block, would I like it sent somewhere? NO! Don't touch it! I found it! She then told me that a send out test had been done on it, but she couldn't give me the results because she is a tech and techs can't give those out. She could tell me that it was the FLT3 result. Granted, I am pretty sure the FLT3 result is negative, but if it's not, then I would be getting a bone marrow transplant. The stakes for my life, both near term in terms of needing more treatment and long term in terms of how cooperative my leukemia was likely to be are pretty large. Negative and I continue as I am. Positive and the next six months are devoted to getting and recovering from a bone marrow transplant. I thought I was doing well to be polite and not demand to speak to her supervisor seeing as how the lab results actually belong to me and I should be able to get them.

I also pointed out to her as a process improvement suggestion that it would be much better if the pathology lab knew what specimens they had in the molecular pathology lab, like maybe if they shared their log books. She told me that what had happened was that the sample had been sent from CMC to the pathologist rather than to the lab so it somehow bypassed the usual logging in. I'm really fortunate that the person who happened to know where my sample was located was at work today, I guess.

I called Dr. Hill's office and the secretary told me she would get a message to Dr. Hill and some one would call me back. The nurse called back an hour later and told me she had talked with Dr Hill who was puzzled about why I'd want a FLT3 done from my remission marrow done in November. I explain, no, I wanted it done on the marrow that *arrived* in November and, in fact, that the lab tech told me the lab had been done. She searched through the chart and couldn't find it. She told me she'd call me back. An hour later, she told me that the nurse practitioner had tried to find it and couldn't and asked some more questions. She told me she'd call back. A few minutes later, I realized that if the nurse called the lab tech who told me she saw the results, that the lab tech could show the nurse where it was in the chart. I can, by the way, be totally sympathetic with the nurse about this. DHC's electronic medical record can be tough to use and every job function gets a different view so what the lab tech saw might be different from what the nurse had access to and things can be very difficult to find because you had a different set of flags on when you found it the first time. Anyway, she called back about an hour later and told me that the lab tech said it would be done by the end of the week. I asked her if this was really a test that took six weeks to run. She told me that she didn't know and I felt a little bad for not being entirely nice because of course she had nothing to do with it before today.

Who knows what it means for sure, but the summary statement is that I am glad I decided to track it down because I am not sure the test would ever have been run and at some point, someone probably would have wondered why this dusty set of slides was sitting around in Lebanon and sent them back to CMC, but they would have made a typing error and they would have gone to a different CMC, the Charlotte Medical Center, who would have recorded and filed them, but I'd never have been able to find them.

I can tell you that I was pretty upset about this most of the day. Just in retelling it, I can feel that my jaws are tightening enough that my teeth don't quite line up.

I guess I'll be getting a result, maybe, at the end of next week. Unless the sample is lost, the lab floods, people forget to run it, my slides were mislabelled or they don't remember to call and give me the results. OK, so this was frustrating for me and I didn't have a whole lot of other stuff going on today and I have a fair bit of health care system savvy and I have the doctor card that gets me better treatment. Pity the poor, slightly hard of hearing older person who is not very well educated and ahs to try to track this down. I suspect they would give up after two or three phone calls and it would probably never get done. Or maybe they'd mention it at their next PCP appointment and that doc would have their office staff track it down, taking the same six or so hours it took me, but now the slides have been sent to storage and it will take a week to get them back.

Why is health care so expensive? Today's journey certainly points out a few possibilities: non-interoperable systems, not all components of the system functioning reliably, difficulties ordering non-standard labs and procedures (and so much of cancer care is non-standard), on and on.

The thing about this test is that it's not, say, a thyroid malfunctioning which will make you feel miserable, but is unlikely to kill you even if the test results are lost for several years. It is also a test result that can only be run on a particular diagnostic material the entire quantity of which would fit in a shot glass. There is no more available or any way to get more except for time travel.

You can imagine why I was pretty revved up for most of today about it and really upset. We were going to talk about Annals, but that will have to wait for tomorrow.