Obligatory in any post that references Johns Hopkins:
Also, probably NSFW. Which for you elderly folk, means “Not Safe For Work.” But if you’re elderly, you’re probably retired. So it’s safe for you.
Anyway, the point here: I’m in the process of making an appointment up at Johns Hopkins University Hospital. Since I plan to hang out on the East Coast for a while, I need a doc over here. Johns Hopkins has one of the best cancer centers in the country, but it’s also where Dr. Li trained, so she was able to give me a few recommendations. I’ve found that if doctors have some familiarity with each other (like Dr. Anderson and Dr. Al-Katib), it’s a bit easier to get them to converse, coordinate, chat, etc.
Johns Hopkins is now the sixth(!) medical system I’ve had to ship my records/tissue off too. By now I’m a pro. But this whole process…holy hell. It’s no wonder people don’t go for second or third opinions. I – my mother, more accurately – have been extremely diligent about keeping my records, organizing them, keeping them updated, and keeping them together. But we’re pushing into the hundreds in terms of a page count, and I’m still finding new things from various doctors in the mix.
It’s a little surprising, but I don’t have that many medical records. Most of the stuff is repetitive – bloodwork every week, chemo records for each cycle, doctor’s notes for each checkup. But some of the stuff is more interesting. If you’re planning to get cancer anytime in the near future – which I do not advise* – these are what new docs are really looking for:
- Pathology reports: They did all sorts of crap to my tumor. It’s big, so there’s a lot of tissue to play with, and Henry Ford, U-M and the NIH have all played with it. They slice it up nice, look at it under a microscope, stain it with stuff (to make it react…something like that), and do other things. The path reports are the hardest to understand, but they’re very important for the docs. Fortunately (and perhaps unfortunately), I have three of these things now. Johnny Hopkins wants to make it four. Sometimes, these hospitals are just going by protocol when they ask for my tissue, not realizing that I have had the damn thing examined three times. But whatever. They want tissue, there’s a lot of it.
- Doctor’s notes: Routine notes are boring, but when you discuss a lot during a visit, or go in for a consult, these can be very interesting. In short, the doctor is supposed to summarize the meeting and his or her thought process behind what he said at the meeting. I’m sure these are a pain in the ass to maintain, but the substantive ones are very important for a doc to see to be able to figure out what the other doctors are thinking.
- PET Scans: These come in two forms: a written report, and images on a disc. The discs are way cooler, but also more difficult to play with – computers from different health systems don’t always play nice. But I think the discs are extremely important. For example, my second PET scan says that there has been a “significant decrease in metabolic activity” and the third scan says there has been “further decrease in metabolic activity.” Well that’s not exceptionally helpful. Until you look at the images and see the significant difference between the two.
The issue is, the way I’ve acquired and maintained this stuff cannot be normal. I ask for printouts of every test every time I go to the doc. The mother has all the stuff in a binder with flags and tabs and whatnot. I have multiple binders and folders. I don’t know how everybody handles their stuff, but I can’t say I think this is normal.
And the upshot of that is I cannot imagine how many errors are made or how much care suffers because medical record maintenance is an absolute disaster. Of course, intra-hospital systems are just fine. For example, Henry Ford uses a system called CarePlus that I’ve been able to observe, and it’s pretty efficient and organized. That’s why Dr. Kim walked into the room and started checking my groin for lumps – because he saw a note on a groin injury I had back in 2009.
But when a patient wants to go from hospital to hospital, that’s where the problems begin. The process literally goes like this:
- Hospital B tells me “send us your medical records from Hospital A”
- I contact somebody at Hospital A. They send me to “medical records.” Medical records doesn’t know me or my case and really can’t tell which records are which. So I get a possibly-incomplete stack of records. Then my images are in a department called “nuclear medicine.” Awesome name; less awesome to find it in the hospital.
- I send some records to Hospital B. Sometimes I’m not sure what I’ve sent; sometimes they don’t get what they want. Then they request some tissue.
- I ask 37 people how I can get my own tissue. I’m finally led to the people in the pathology lab. I ask them to send my tissue. They say they can’t without a request from Hospital B.
- I call Hospital B and ask them to request my stuff. It gets sent.
- Inevitably, something gets screwed up.
By now, I’ve played this game enough times and developed enough contacts that I can make this process happen like clockwork (as I did this week, getting 90-some pages from 4 medical centers along with my tissue over to JHMI).
But holy hell, what if I was a 70 year old who was really having some serious health problems? Or even a normal person who was less anal about his medical records? I would have no idea how to get this stuff, no idea if I had it all, and thus, Hospital B would have no idea what they had. And this is serious stuff. Like, cancer serious.
Fortunately, I finally have this system down pat. It’s still taken roughly 15 e-mails and five phone calls over the course of a week, and I still don’t have an appointment scheduled. This is in part due to JHMI’s system – they have case reviews on Tuesday, and I called last Wednesday. But still – this is what it takes to schedule an appointment.
Anyway, the end game is an appointment at Johns Hopkins at some point in the near future. I’m still considering hooking up with a more local (in DC) oncologist just so I can get tests or bloodwork or whatnot done with minimal disruption to my schedule. But I wasn’t going to pass up one of the country’s best cancer centers and a personal recommendation from a doctor who knows the system.
That is where we stand. I’ll keep you posted.
(*District of Columbia Bar disclaimer: Since I have not yet been admitted to the DC bar, the advice to “not get cancer” is *NOT* legal advice and should not be construed as such. It is also *NOT* medical advice, because that would be practicing medicine without a license. It is just general life advice. Take it as such).
